My Thoughts and Feelings – Chronically Fabulous Therapist

Mental Health, Trauma, and Chronic Illness

Talking about mental health and chronic illness is triggering for many of us warriors. Many of us have been dismissed, not believed, and misdiagnosed by medical providers. We hear things like: “It’s all in your head.” You’re just depressed.” “It’s anxiety.” “Your symptoms are all from stress.” And the list goes on. This is medical trauma. Our physical symptoms and diseases and diagnoses are very real. For many, like me, they are genetic and very likely would be present without stress or trauma or other mental health issues. And while every human experiences stress, many chronic illness sufferers haven’t experienced trauma significant enough to be the cause of their diseases. Being told these statements is dismissive, isolating, stressful, depressing, unfair, and 100% untrue. And they cause us to be triggered by and immediately reject any mention of mental health in conjunction with our illnesses. But…

I’ve learned through decades as a psychotherapist, trauma survivor, and now chronic illness warrior that our bodies and minds are intricately connected. So much so that we can’t really experience symptoms in one without the other being affected too. And therefore, these medical providers do a big disservice by dismissing our symptoms as mental health issues only and keep our community from being able to talk about their connection in a healthy way. So, I will try my best to remedy that with this post.

My diseases are all very real and valid and genetic. No one really knows why some people develop autoimmune diseases and others don’t. Physicians, like rheumatologists who specialize in autoimmune diseases (only the good ones of course), I would argue are the best detectives in the medical world. There are no definite genetic markers for many of these diseases (all of mine), and rheumies have to be very educated and experienced and able to put together a lot of puzzling pieces. From what I’ve learned, it’s generally believed that some people are genetically predisposed to autoimmune diseases, but some kind of environmental factor triggers the start of the disease in a person’s body. This trigger can be another illness, like strep throat and others, an accident, or a myriad of other often unidentified events.

I firmly believe that my autoimmune diseases are intricately related to the constant and ongoing trauma I’ve suffered throughout my life. In addition, trauma triggers and other stress almost always trigger a flare of all my symptoms. It is generally well documented that this link between stress and flares is true for many autoimmune warriors. Again, our bodies and minds are intricately connected.

Being good at my job as a psychotherapist requires me to be self-aware and always working on myself. That is imperative to be fully present with my clients and not superimpose my own issues, thoughts, and feelings onto them (countertransference as discussed in my last post). I’ve always taken this very seriously. And because of all my trauma, I learned how to effectively manage it so that it didn’t outwardly affect my life, my job, or my interactions with others. However, all of this trauma still had to go somewhere. For me it was my body.

The effect of trauma on my body became even more clear to me when I started seeing a functional medicine physician. Through her practice, I had a procedure called a VitalScan. My results were alarming, even for my physician. My body is always functioning in a stress response. Basically my body is acting as if I am always in danger, like my traumas are still always occurring. My physician said that she has never seen such a significant stress response. Most people alternate between relaxed and stressed states. Even though I’ve suffered almost a lifetime – literally – of trauma, this result took me by surprise. By the time of this procedure, my trauma was in the past. I had removed or significantly limited contact with all but one of my abusers. And the one remaining was no longer abusive and actively working towards making amends for his abuse.

But… the effects from all this trauma don’t just disappear. My body was clearly taking the brunt of all of it. And I believe that all of this trauma and my body’s stress response is very much linked to the severity of my autoimmune diseases and their resistance to treatments. Again, my diseases are very real. And even if my body completely heals from this trauma, I am confident that my diseases will remain. And they likely will still be severe and significantly impact my life. But, this procedure alerted me to the need for finding a therapist competent in trauma work. I’m hoping that by doing this work, my flares will be less frequent and a bit less debilitating. But even if this doesn’t happen for me, working through all my trauma with a validating and compassionate psychotherapist, can only be beneficial for me.

So I began my work with the most amazing psychotherapist I’ve ever had…

Recently my therapist recommended that I share my story. I’ve shared a lot, but I’ve really only ever shared tidbits of my story. I’ve always been given messages that I need to protect the abusers in my life. That the potential consequences to them were more significant than the potential healing I could receive from sharing my story. My family of origin never took my feelings or thoughts into account, and I was always given the message that sharing my feelings would hurt them and me. This along with the explicit message said a lot: “Let’s just keep that in the family.” In other words: Never share the painful or shameful things with others.

My family members lacked compassion or kindness but always expected me and others to care for them. I was the calm one. The one called upon to fix their problems. Never the one allowed to need help or compassion or kindness for myself. Always the one giving and never the one receiving. And my adult life repeated this same pattern. In the evangelical world I was punished and ostracized for sharing how church leaders hurt me. Which happened repeatedly. And with my husband being in ministry, I received the message that sharing my pain with others would hurt him and in turn hurt me. So I learned to be silent, and my body bears the burden.

Before I really begin, I want to say a few things. Most of the members of my family of origin, my Dad especially, grew up in unhealthy environments where their own emotional and physical needs were unmet. I truly believe that they were doing the best that they knew how to do. And for my spouse – he is truly a changed person. He has been through his own trauma and decades of therapy. And he is now not only compassionate and kind to others, but also showing that same compassion and kindness to me. He has emotionally and/or physically removed himself from toxic places. And he is actively working on repairing the damage he has done to me. He was also a victim to these unhealthy spaces. And he’s ashamed of his previous behavior. I hope that my readers can show him the same grace that I have shown to him. This does not however excuse or remove the traumas inflicted on me and their damage. I still experience constant triggers.

Also, if you are currently experiencing trauma or are a trauma survivor, please stop reading if you think this might trigger you and lead to your own trauma reaction. Please take care of yourself.

I am finally allowing myself to share a fuller picture of my life in this public format. This is my story, and I am allowed to share it. Here I go being brave…

I’ll start with the parts that are easier for me to write about. My childhood. I was a very lonely kid. I had one safe adult in my life – my Nana who lived 2 doors down from us. Sadly though, she developed Alzheimer’s pretty early in my life. My family members were never emotionally present for me. And I grew up in a conservative evangelical culture where obeying parents and staying married no matter what were some of the highest values. My parents never protected me from emotionally damaging situations. We were made to keep visiting my Grandpa and Grandma. My Grandma never spoke to us, and my Grandpa made fun of me. When kids bullied me at school, I had no one to talk to about it. And at the age of 3, my parents had me start taking music lessons – violin and piano. Despite having very strict teachers who didn’t seem to understand the value of encouraging kids, I mostly enjoyed playing my instruments. Until… my family found a way to exploit those talents for their own benefit.

My mom had quit her job as a teacher when my older sister was born. That’s pretty common in conservative evangelical culture. Except my dad never brought in enough money to cover our bills, and my mom didn’t even seem to enjoy being a parent. She was rarely home. Most of her time was spent drinking coffee and doing crossword puzzles at a local restaurant or shopping. She was an avid shopper, hoarder, and spent much of our money on clothes for herself that were never worn and other unnecessary items. Any clothes that were bought for my sister and I we were told to keep secret from our dad. They didn’t spend money on necessary repairs for our home, and there were big holes in the wall in my bedroom from leaky pipes, etc. Our house was overrun with mice with nothing done to control them. Our water was dangerous to drink and stained our bathtub. The only time the house was cleaned was when I did it out of desperation and embarrassment. My mom was hours late picking me up from school. I would be crying on the inside when the principal and other staff were locking up the school and my mom was nowhere in sight. I would smile bravely though, saying to them that she would be there any minute. My mom never remembered my likes and dislikes no matter how many times I told her. There is so much more I could say. But in short, my childhood was filled with neglect and loneliness.

To solve our financial problems, my parents began exploiting the musical talents of my sister and me. They started what was labeled as a family music “ministry”. They forced us to travel up and down the east coast and play our violin and piano and sing in churches every weekend. The churches would take an offering for us, and that was our main income source. It was horrible for me. I was a very socially anxious child. So not only was this exhausting for me as a 5 yr. old, but it was also terribly embarrassing. Not only did I have to perform in front of others, but I had to stand in line at the back of the churches to shake peoples’ hands and then spend the remainder of the day talking with pastors and other adults that I didn’t even know. I spent the whole weekend being a mini adult, smiling, and performing. When on the inside I was sad, anxious, lonely, and tired. My school homework was done in church pews and in the car on rides between churches. I had little social life because I was away every weekend. Some Sundays we would leave in the dark hours of the morning, drive all the way to Boston, perform in 5 churches, and drive home overnight. My parents never believed me when I told them I couldn’t sleep in the car. Multiple times I remember getting to our house only to see the school bus arriving at my bus stop. My parents instructed me to get dressed quickly, and my mom drove me to school. This lasted through early high school until it mercifully slowed down and eventually stopped when my sister started college. And after getting my driver’s license I got a part-time job and tried very hard to be at home as little as possible.

Any time it seemed I was getting close to sharing how horrible this “ministry” was for me or on the rare occasion when a church member or pastor informed my parents that I seemed very unhappy, my parents reminded us of how much they relied on this income, and I was shamed into silence. My parents have never admitted any wrong-doing. They have completely rewritten the story of my childhood. And this was reinforced for them in our evangelical world – churches asked them to lead parenting classes. I learned that my voice didn’t count, my feelings didn’t matter, and my only usefulness in the world was in what I could do for others. I didn’t get to take up any space in the world unless it was to benefit someone else.

I also learned that I could only ever rely on myself. I never saw any of that money. I worked really hard in school so that I could get scholarships to go to college. I ended up being #1 in my high school graduating class and earned full scholarships – room and board included – to 2 colleges. Go me! When my fiancé insisted that I ask them for some money for our wedding – $500: a small amount considering the huge expense – my dad threw a fit and shamed me for asking. Afterwards I surveyed their house and found closets full of unworn clothes – expensive ones – with the tags still on them. In my early adult life my dad would call me and ask me for money. He would then hang up on me when I said no. While in college, my mom stole money from a checking and a savings account of mine that her name was on and never paid it back. My parents eventually foreclosed on my childhood home after years of not paying the mortgage. When I helped them move out, the house was in worse condition than when I lived there.

During the week I spent time at my church youth group. There we were taught that girls should make every effort to keep a boy’s eyes on our faces and not on our body. We were told to wear lots of makeup, long dresses, no tight clothing, and non-colored tights. We were responsible for a boys’ thoughts and behaviors. We were told lots of nonsense there. I was always an inwardly rebellious kid, so I never believed any of this and saw it for its ridiculous. But again, I was forced to be in an environment that didn’t fit me. One that caused me repeated frustration and one where the grownups again communicated that my voice didn’t matter.

In my adulthood I began to go to more reasonable evangelical churches. However, these places were still filled with quiet racism, xenophobia, and lots of sexism. Women were only allowed to speak on stage if it wasn’t the sermon, or it could on a rare occasion be the sermon if their husband was next to them on stage. Women were put in roles to act as pastors but were never called pastors or paid like pastors. Once I was nominated to be an elder in a church I had attended for a decade. It never even went to a vote. Being a woman was a nonstarter.

During this time I became a little more brave with my inner rebelliousness and began starting discussions about these issues and pointing them out. Even though I’ve always done my best to remain a kind and compassionate person (it’s actually my high level of empathy that led to me being passionate about these issues in the first place), being a woman and challenging the status quo was not well received. These churches like to appear as though they are welcoming for all. When I started to point out the things they liked to keep hidden, I became a problem. I was never invited into their secretive invite-only discipleship program for women. I was publicly insulted by church leaders and then called the problem by the lead pastor when I kindly confronted those behaviors. Finally at one church where I served and gave of my time for over a decade, I was asked to leave by the head pastor. Well ok. Actually what he said was “If you choose to go elsewhere, you go with our full blessing.” I read between the lines. I was told by another church pastor that I was on their church watch list. This was after I processed his recent sermon on gender stereotypes (He thinks they’re biblical) and my trauma reaction to it with 3 other women in a small group. I didn’t realize that the small group leader had been directed to share any perceived negative comments about the head pastor or his wife with the pastor’s wife. My comments were perceived as a threat to the church. The small group leader – who I thought was a good friend – complied. Because that’s what you do in an evangelical church if you want to continue belonging – follow the directions of the pastors and leaders regardless of what they are or who they hurt. There were many more damaging and traumatic moments for me. But in short, again I received the message loud and clear that my voice doesn’t matter – even if I’m using it to help other people. I’m a problem if I don’t obey the rules and stay in my place. To stay in that environment, I could have my own thoughts and feelings, but if they contradict the people in charge, I needed to keep them to myself.

And here’s the part of my story that I’ve kept secret. I’ve only talked with 5 trusted people about the following traumas. So please be kind and compassionate in your thoughts about me and the person involved. Not because his behavior was excusable. But because we’re all works in progress, he has spent decades working on himself, and he feels terribly shameful about his behavior and is committed to making amends and helping me heal.

I’m sharing this because the trauma from my childhood followed by this trauma has had a detrimental impact on my body. My body is constantly stressed from a lifetime of living in a state of trauma. From a lifetime of not getting to share my thoughts and feelings without serious consequences. From a lifetime of not having safe places to be myself. In my psychotherapy I’m working on getting to take up space, getting to have my needs met, and validating my own thoughts and feelings. As part of this, my therapist and I decided that a big step for me was giving myself the permission to tell all the parts of my trauma. Even the ones that I’ve kept mostly secret. My husband and I have both been really good at hiding it. And he really is a kind and compassionate person and always has been outside of our house. Which added to my trauma – I sometimes wondered what was wrong with me that he wasn’t also kind and compassionate towards me. So here it is.

For over 20 years my husband emotionally, sexually, and spiritually abused me. I am a victim of intimate partner violence. There. I said it.

Even before we were married the controlling behaviors and pressure for physical intimacy began. He was relentless. And he repeatedly threatened to break up with me if I said no. One night I said no, and I was particularly determined to not be bullied into something I didn’t currently want to do. After almost an hour of relentlessly asking me, insulting me, and threatening me, finally my boyfriend (at the time) left my college dorm room. 15 minutes later my phone started ringing. Repeatedly he continued to say terribly mean things to me when I kept saying no until I hung up on him. He kept calling back until I put my phone on Do Not Disturb. This was back before cell phones. It was a whole different world back then. Lol. A little while later he reentered my room. People had let him in because they knew him as my nice and safe boyfriend. And this time he kept at it. Insulting me, berating me, demanding physical attention. After hours of this, I was so exhausted I finally gave in. I just wanted to fall asleep. Afterwards he was nice again.

I thought a lot of these behaviors would stop once we got married. I was young and naïve. They didn’t stop. He wanted sex every night. It didn’t matter if I was tired, if I was sad, if I was sick, or if I just didn’t want to that night. And the same things happened. He kept insulting me until I got so tired that I gave in. After a few months, we “compromised” on having sex every other night. And this was religiously followed. It didn’t matter if I was sick. And some nights I was really really sick. In his mind I had no legitimate reasons for saying no. This every other night pattern continued up until about 5 years ago. He also continually threatened to divorce me but now it wasn’t just over sex. Every few years he developed a different obsession – something significant that I needed to change for him to be happy with me. For a while it was that I needed to lose weight. Then for many years it was that I needed to have breast surgery. He was relentless about that too. After one of my good friend’s weddings, I was feeling close to him, so when we got home and he pulled me close I thought he was being affectionate. Instead while hugging me he told me that for the whole wedding he was looking down my dress and was really turned off and disgusted by my breasts. I never had breast augmentation surgery. Eventually he moved on to the next obsession.

He got angry with me a lot. If I took more than a few seconds looking for my wallet in my purse in the checkout line, he would give me disapproving stares and tell me his disapproval in the car. Once during a disagreement in Target about the lights on our first Christmas tree he found notecards shaped like letters, and he started putting them in my arms – B. I. T. C… You can finish the word. He would call me in the middle of my work day frequently to yell at me about something. He often left random papers lying around our house. And then when he couldn’t find a paper, he would call me to yell at me and blame me for putting it somewhere. At my first professional job, I didn’t have a phone in my office. So he would call me on the shared phone in our busy office and yell at me with my boss, coworkers, and my staff present. Later on when I had my own practice he would yell at me on the phone in between my client sessions. It didn’t matter to him if I had 8 clients back-to-back and was exhausted. After, I would wipe my tears, put on a smile, greet my next client, and pour myself into them for the duration of their session. He berated and insulted me so often during my work day using instant messaging that I eventually blocked him from my Gmail chat. He did this through text too. Once I asked him to meet me and our kids at their elementary school for an open house. I was 5 minutes late because I had a lot of clients, one of my sessions ran a little late, and then I had to drive about 15 minutes to pick up our kids from daycare. Meanwhile he was working from home and simply had to drive less than 5 minutes away to the school. My whole car ride he was yelling at me and insulting me over text and letting me know how much of his time I was selfishly wasting. These same interactions happened again and again.

Often when I would ask him for something or let him know something was important to me, he would use that interaction as an opportunity to remind me of all the things he thought I was doing wrong and all the ways I wasn’t meeting his needs. My whole body felt tense any time he walked into a room and sat down next to me because often he would then tell me what a horrible wife I am and how I don’t love him enough. When I would ask him what more I could do, he never had a specific answer for me. He threatened to cut up my bank debit card several times because he saw charges at Target that he felt were too high. It didn’t matter to him that in those shopping trips I was buying household supplies and clothes for our kids. When a scammer humiliated me and stole thousands of dollars from me, he spent the whole evening calling me stupid over and over again. I had to escape to a friends’ house sobbing the whole way there. I’ve been repeatedly laughed at and insulted while crying. When I tried to get away to have some space for my feelings, several times he locked me out of our house and stood at the door laughing. Other times when I locked myself in a room, he picked the lock. Once he took an entire door off its hinges.

For much of our relationship he was a campus pastor for the Christian student group at our local college, and he often gave talks/sermons there during the week. If he was going to be speaking there during the week and I talked with him about a way in which he had hurt me, he would berate me for bringing it up on a week where he was speaking. I was allowing him to be “spiritually attacked”. When we prayed together, I never prayed the “right” way. One car ride he insulted me for over an hour for not spending enough time thanking God in my prayer. He told me once that I “represent everything that is wrong with American Christianity.”

We received marriage therapy for several months at his request. At one point she asked us to make a list of all the things we needed an apology for. When our therapist gave me the floor, I started with needing an apology for him threatening to divorce me if I didn’t get breast surgery. He shut down and expressed disgust that I brought up that issue first. I never received an apology. He never followed through with the therapist’s recommendations and most of the sessions seemed like another opportunity for him to tell me all the things I’m doing wrong. Eventually I let our therapist know that it was not healthy for me to continue in sessions.

I poured myself into my husband. I tried my best to show interest in the things he’s passionate about. In turn, I typically had to beg and plead for him to do the things with me that I wanted. He would either refuse or somehow make the experience miserable for me. When we bought our first house, I wanted to build a deck. He wanted to finish our basement. We finished our basement, and I never got a deck. My achievements were rarely celebrated. Many birthdays and Mother’s Days went by without much acknowledgement. And I couldn’t talk to anyone about it. People loved him. He was a good guy to everyone else. If I were to divorce him or even talked about it, I was threatened with him damaging my reputation. We were also in the evangelical culture where divorce is very much frowned upon. The organization he worked for did not react kindly to their staff getting divorced. For his job, he had to fundraise with churches and individuals (all our friends) for his salary. If I talked with people, I faced the very real threat of them removing their financial support and in turn hurting my chances of receiving financial support.

There is so. much. more. Again in short my feelings didn’t matter. I didn’t deserve to take up space in our family or in the world. And I had no one to share my feelings and thoughts with. Nowhere to share my story. And now sadly even though the relationships in my life are good and beautiful, my body is suffering. I don’t think this lifetime of trauma has caused my autoimmune issues. But I do think that this trauma has caused my body to be in a constant state of stress and that this level of stress increases the severity of my symptoms. Everyone with autoimmune disease has their own set of triggers – situations or events that cause their autoimmune diseases to flare and their symptoms to increase. And when we talk about mental health in connection with autoimmune diseases or other chronic illnesses, it’s not a black and white situation. A lot of things can be true. Yes – our diseases are very real. Yes – stress can increase or trigger symptoms for some warriors. Yes – Many chronic illness warriors can experience an increase in symptoms without significant stressors. Yes – Chronic illness warriors can also suffer from depression and anxiety as a result of their debilitating physical symptoms. I hope that more medical providers can develop a better understanding of mental health and chronic illness and in turn communicate in healthier and more helpful ways with their patients.

For me, my number one trigger is stress. Continuing to live in safe spaces is really important for me in decreasing my stress response. And I have worked hard at this in the last few years. I have distanced myself from people and places that aren’t healthy for me. My circle has become much smaller and at the same time much stronger. I have a small handful of people who pour into me at the same level that I pour into them. They are my safe spaces. And my husband has been on his own healing journey. And he is actively creating a safe space for me in our home and in our relationship. And over A LOT of time, my trauma triggers are becoming less and less intense and frequent. I’m hoping that this reduction of trauma and stress will have a positive impact on my chronic illnesses too. I am taking up more space in the world. And now my story is also taking up space. Thank you so much for reading this very long post. I wish all of my readers safe spaces. You also deserve to take up space in this world.

Let’s Talk About Medical Trauma

Medical trauma is a very real thing for those of us in the chronic illness community. Most of us will experience at least one instance of medical trauma and many of us will experience chronic trauma. I’m writing this blog entry in large part to help me cope with my own very recent medical trauma. It will likely be long, because in my therapy practice I specialize in trauma, and I’m very passionate about helping others manage symptoms and heal from trauma.

Before I dive right in, I’d like to discuss a few important things mainly for my readers with their own current or previous traumas. I will try to be sensitive and not share too many upsetting details, but if at any point while reading this you become triggered: please stop reading. I do not want to cause you more pain. For decades now I have helped my own clients process and begin healing from trauma – some of them with acute traumas from a single incident but many with recurring and complex trauma. And I suffer from my own Complex Post-traumatic stress disorder (C-PTSD). This is not presently an official diagnosable condition according to the current Diagnostic and Statistical Manual of Mental Disorders. However, based on my personal and lengthy professional trauma experience, it very much should be. Hopefully in future versions…

A trigger is anything that reminds you of a previous trauma. Triggers cause your body and mind to react as if the trauma is occurring in the present. This can sneak up on a person, so please pay careful attention to your thoughts and feelings as you are reading this blog or reading or watching anything else trauma-related – movies, TV shows, books, social media, etc. Trauma triggers are very real things. I recently started following a page on Instagram where sexual abuse and assault was being highlighted. This is a really important topic as many of us, particularly women, have experienced it. However, what I didn’t realize was that people were sharing their own personal stories on this page. While that can be really helpful in education, bringing a long-hidden issue into the spotlight, holding abusers accountable, and helping other victims recognize and feel validated in their own sexual traumas, for me it was a very triggering experience, and I had to stop following the page. I’m trying my best to keep that from happening on my own blog.

Another important concept to address is vicarious trauma. Vicarious trauma occurs when you take in details of someone else’s trauma, and you begin to experience the trauma as if it is happening to you. This can also sneak up on a person, so please be careful readers with your own thoughts and feelings while reading this post or any other medium highlighting trauma.

Ok. So enough with the medical jargon. Let’s begin. Medical trauma can occur in many settings – physician offices, pharmacies, hospitals, and even in psychotherapist offices. Sadly some of my colleagues fail to fully recognize the privilege of holding their clients’ thoughts, feelings, and stories. And some are not aware enough of their own traumas or thoughts and feelings which leads to countertransference. Ok I lied. Lol. Here’s another medical term – countertransference occurs when a therapist is unaware of their own thoughts and feelings and reacts to their client out of their own emotional issues. This can be especially damaging for clients seeking help with trauma. Psychotherapists are real people too. And we all have our own thoughts, experiences, and feelings that can be really beneficial in helping our clients. However, it’s also important that we are aware of ourselves enough to not allow them to negatively impact our clients. I’ve seen too many clients needing therapy mainly to process trauma from a previous therapist. If this describes you, I sincerely apologize on their behalf. These professionals are probably not able to acknowledge that you deserve their apology. But when you experience trauma from a professional from whom you are seeking trauma help, it can be especially damaging. I’m by no means perfect, but I work very hard not to cause more trauma for my already hurting clients.

For those of us with chronic illness simply finding the right specialist to diagnose and treat us can be a traumatic experience. Many wait decades to be properly diagnosed with psoriatic arthritis (PsA) and/or a myriad of other complicated diseases. Fortunately for me my diagnosis journey for PsA was relatively brief, but I still saw multiple specialists before miraculously landing in my current rheumatologist’s office. To this day he remains my very favorite physician. The medical world is complicated and very hard to navigate, especially for novice patients. We really have to be our own advocates. Not having a proper diagnosis is isolating. So, if you’re still searching for your person, please don’t give up. Taking a break is necessary sometimes, but after that break, please keep going. You are worth the effort.

If you have a complicated disease like PsA or many others, there can be diagnosis trauma (I made that term up). Even for me. Soon after starting with my first rheumatologist, he left the practice. Having later tracked him down in his current practice, I completely understand why he left. The two practices are not even comparable in terms of atmosphere, office set up, staff, attentiveness to patients, skill and experience levels of physicians, services offered, and really everything else. I’m surprised he even ever practiced at the first tiny little practice in my relatively small town. When he left though, especially having read other patients’ horror stories, it was really anxiety provoking for me. Rheumatologists (affectionately called rheumies) are not all equal.

And despite reassurances from my first rheumy that the transfer to another onee in the practice would be completely fine for me, my anxiety proved correct. This second physician spent almost every appointment questioning my diagnosis. I’ve since discovered that my case is particularly tricky, and I tend to get all the rare things. Lucky me. Sigh. To reframe it when my daughter was really into unicorns, I liked to think of myself as a rare precious unicorn. Now that she’s passed this stage and unicorns are apparently no longer cool enough, I currently refer to myself as a rare precious gem – think “Steven Universe”. I’ve got to stay cool and relevant. Lol.

This particular second rheumy seemed like a nice person and expressed some compassion, so I stayed with him for far too long. After every appointment I would spend the next several months until my next one ruminating over every last detail. He never seemed to remember important details about me or my symptoms, and I often wondered if he even reviewed my chart before appointments. Diagnosis is extremely important in the chronic illness world. It’s our gateway to proper treatments, understanding from significant others, and support from fellow warriors. This was medical trauma – unintentional I’m sure on the part of this rheumy, but trauma nonetheless. I’m so very thankful that I gave myself the gift of tracking down my initial rheumatologist. Fellow warriors – trust your instincts. If your physician is causing you needless anxiety, saying things contradictory to your experience, not remembering important details about you, etc. find another one who will give you the attention you need and deserve and one who has enough experience to competently manage your particular issues.

Pharmacies can also cause unnecessary anxiety for patients. Delayed shipments of specialty medications, not advocating for patients with insurance companies, billing errors, crucial out of stock medications, medication shortages, and so many other things. And I devoted a whole other post to the trauma of needing opioids for pain management. It’s especially frustrating when we’re forced to use a particular pharmacy and this same company also manages your prescription benefits – I’m talking about you, CVS. When this happens repeatedly for those of us in the chronic illness community it’s called medical trauma. So much of this is out of our control. The only advice I can give is to keep advocating for yourself and find physicians who will navigate the process with you.

Hospitals and ERs are also a major source of trauma for chronic illness warriors. They are often not set up to deal with the intricacies of rare or more complicated diseases. I’ve heard way too many horror stories from other patients. But I will only share the story of my one and only ER visit. I never want to visit an ER again. For some important history – I’ve suffered from gastrointestinal (GI) issues for most of my life. But as a helper, I have historically paid very little attention to my own body. This combined with my abnormally high pain tolerance kept me from pursuing proper medical attention. My few medical visits for these issues throughout the years left me with physicians telling me that my symptoms were stress related – likely because I underemphasized my symptoms and I have always had a lot of stress in my life. But in the fall of 2019, I experienced my first severe ulcerative colitis (UC) flare. Because I had no official diagnosis and was unaware of the significance of my GI issues to be able to inform my rheumy, I was taking a biologic with the rare side effect of causing UC flares. This biologic worked the very best for my PsA (and to date I’ve taken a lot of them thanks to my ridiculously overactive immune system), so it was devastating when it led to a life threatening UC flare. I think I’m still my rheumy’s only patient to have this experience. A rare precious gem indeed.

But… back to my ER visit. After a visit with my primary care physician (PCP), her staff diligently called a local GI specialist until finally they found an initial visit slot for me. However, in the meantime my symptoms became so severe that I couldn’t sit or lie down without excruciating pain. I barely left my bathroom. And the rest of my time at home was spent sleeping. I was too exhausted to do anything else. There were several nights where the entire night was spent on the toilet or rocking myself on my bathroom floor. The pain was unreal. Out of sheer desperation I decided to go to the ER. I was mainly hoping for some pain relief or relief from symptoms. At this point I really would have been happy lying in a hospital bed in an induced coma. It was that bad. I chose Johns Hopkins because I thought they would be best equipped to deal with wonky autoimmune issues.

When I arrived in the ER large signs were posted everywhere stating that pain meds were not given to chronic pain patients. At this point I had only ever taken NSAIDs for my pain. But because of my severely flaring GI issues I was no longer able to tolerate them. After checking in at the front desk, I waited over an hour to be seen in triage. Then when in triage after explaining my symptoms, a nurse set up an IV that was never used and gave me one ibuprofen (an NSAID). Ummm…. I was sent back to wait in a very uncomfortable (especially because my rectum was completely inflamed) waiting room chair for about 10 hours. Finally at 2ish AM, I was taken back to be seen by an ER physician. At this point a student was the main treating physician. He ordered zero imaging, gave me no pain relief, and attempted an excruciatingly painful rectal examination with his hands. He then informed me that he couldn’t see anything and stopped the exam because I was in too much pain and moving around too much. He and his supervising physician later came back into the room to inform me that there was nothing they could do to help me and that my best course of action was to wait for my GI specialist appointment. They sent me back out to the uncomfortable waiting room to wait for my husband to pick me up. He was of course at home with our kids. I’m not an easily rattled person, but that ER is REALLY scary at that time of night, especially for a tiny woman like me. I went home feeling even worse than before.

I got no relief until a few days later at my initial GI appointment when I was told to start on high doses of prednisone. A colonoscopy a couple of days later revealed severe ulceration throughout my entire colon and rectal area. The pictures from that exam look awful. I could have died if I waited any longer to be treated. And because I was in survival mode it took me many months before I realized how traumatic this ER visit was for me. For fellow chronic illness warriors that have also suffered ER trauma – your trauma is real. Significant others – please validate your loved ones’ trauma for them. I have since avoided going to an ER at all costs, which will lead into my next trauma story…

Medical trauma can also occur as a result of medications taken to treat diseases and their symptoms. Because of the trauma and stigma associated with using opioids for chronic pain, when my functional medicine physician discussed an alternative treatment that seemed hopeful, I was eager to try it. As a side note – the huge majority of chronic pain patients don’t medicate down to zero pain. We simply medicate to a functional level. For most of us this is still a very high pain level. Our tolerance level is unreal for most people. Back to this situation though – Finally my medication arrived in the mail from a very specialized compounding pharmacy. I was using this particular medication for an off label use, so it’s not covered by insurance or filled at most pharmacies. However, my physician and the head of her practice had shared many great success stories from other patients using this med for inflammation and pain relief.

So here I was 2 nights ago now injecting this liquid medication under my tongue with high hopes for its effectiveness. Then I crawled into bed willing the meds to start working their magic. Within an hour my whole body started moving uncontrollably. A little later my nasal passages began to close from inflammation making it hard to breathe. Then soon after my throat started closing too. This led to a panic attack because I could no longer take effective breaths. I must have been able to breath somewhat though because I’m still alive. Frequently throughout the night I was also in the bathroom for terrible GI issues. And my abdominal pain rivaled the previously discussed UC flare experience. Finally at about 5 AM my body must have settled down enough for me to get a few minutes of sleep until my son woke up and started making breakfast. I had moved out to our living room to keep my husband from waking up. I was so distraught, it didn’t even occur to me to wake him up for help. The next day he told me that I should have woken him up to take me to the ER. But because of my last horrendous experience, going to the ER didn’t even enter my mind as an option.

Because I’m a chronic illness warrior and used to functioning and maintaining a family and work schedule at pain and fatigue levels that would keep most people in bed all day, I tried to go about my day as normal. I barely made it through my physical therapy (PT) appointment, and my PT told me I should contact my physician. For some reason before this, it didn’t even occur to me as something I should do. When I got home I sent a message to my physician’s office through their patient portal. Fortunately they responded promptly and completely validated my experience. I say fortunately because sometimes when physicians haven’t experienced a situation with previous patients, they invalidate the patient’s experience and insist that the symptoms must have come from something else. My guess as a mental health expert is that they don’t want to feel responsible for their patients’ adverse reactions and are responding out of their own sense of inadequacy. That’s just an educated guess though. I tend to view most people as operating from their very best in any given situation. Which of course also does not excuse medical negligence. We all need to get out of our own way when helping other people.

My physician scheduled an emergency telehealth appointment for me within an hour. Not only was my physician present, but also the head of the practice and a student (for learning experience). Again, I’m a rare precious gem and I’m sure I provide lots of great learning experiences for medical professionals. After consulting with another physician outside of the practice, they informed me that not only have they never encountered a patient with this severe of a reaction, but this other physician hadn’t either. Together they determined that it was a very rare allergic reaction, and this medication was immediately placed on my NEVER take again list. I had already thrown it in my trash can and covered it up with more trash so I never had to see it again. They responded compassionately, expressed great empathy for me, and never questioned my experience. All the things that are needed to have a trusting relationship with a physician and their practice. And because of this a few days later now, I am finally able to acknowledge for myself the magnitude and significance of the trauma I experienced and to allow myself to rest (well a little at least – I drove an hour and am at my son’s regional winter track meet as I edit this post. I don’t recommend that. Lol.) and heal and express myself through this post.

I hope that all of my fellow warriors have physicians in their lives like this. We are literally entrusting out lives to these professionals. And knowing that we are seen, believed, respected and validated is crucial. If you are not experiencing this on a regular basis from a physician, please if at all possible find another one who will. You are worth that. I recognize though that I’m speaking from a position of privilege. Fortunately in Maryland, we have a plethora of competent physicians to choose from, especially rheumatologists. There is very little reason in my area to stick with one who isn’t adequately meeting your needs. Other areas are not so lucky. But, if at all possible, a great physician is worth the time and effort of traveling longer distances. And thankfully telemedicine is becoming a more readily available option as well.

Please take care of yourselves fellow warriors. Your trauma is valid and worthy of attention. Surround yourself with professionals, family members, and friends who respond with empathy and compassion. And distance yourselves from those who are incapable of providing that for you. Validation from others is crucial in the healing process. Lots of healing thoughts, feelings, and love from me to you. Keep going. Your life is important.

Chronic Illness, Loss, & Grief

Chronic illness is a journey of grief. Grieving my old body. Grieving so many losses. Illness has taken a lot from me. But right now the focus is shoes…

I love shoes. I’m not really sure why or when my obsession started. It could be because the doctor my parents took me to as a little kid said I was born with flat feet and then I was forced to wear ugly orthopedic shoes for years and years. Ironically now my arches are too high. But that’s another story… We all have obsessions or favorite things I guess.

About three years ago when we put our house on the market, I gathered up all the beautiful shoes I could no longer wear, and put them in a bin to donate. But truthfully I still couldn’t let go of them. I was still holding out hope that I would stumble upon a miracle treatment for all my chronic conditions and I would somehow be able to wear them again. So instead of donating, I put the bin in our storage unit where my shoes sat for about a year while I moved on with my life. I didn’t have much time to think about them.

But… then the day came for our first storage unit clean out. And I discovered my shoe bin and the flood of emotions that came back with it. And I found myself sobbing outside our tiny storage unit. Sobbing not just over the loss of shoes – although that was a big part – but also over what they represented.

When I was first given the diagnosis of psoriatic arthritis, I was hopeful that I would be one of the lucky ones. One of the ones that found a “miracle” treatment – a “magical’ biologic that would make all of my symptoms disappear for years and years. But that just isn’t my story. Instead over the years I’ve kept accumulating more labels and diagnoses and more treatments. Restless leg syndrome, ulcerative colitis, psoriatic arthritis, and related things: cervical stenosis, sacroiliitis, achilles tendinitis, plantar fasciitis, chronic pain syndrome, etc. And those are just the ones that keep me from wearing my beautiful shoes.

My current goal is to not remove symptoms entirely but to keep them from progressing and to keep my body from quickly rejecting effective treatments. Not exactly the “miracle” I was hopeful for. So there I was sobbing. Sobbing over finally saying goodbye to my shoes. And sobbing over the death of hope in a “miracle” treatment.

Grieving is not just about losing loved ones to death – although I’ve had more than my fair share of that over the last few years too. Grieving is about loss of any kind. Grieving anything that was important to a person – people, shoes, or hope. I’ve lost my hope in a lot of things recently mostly because the lovelessness of others combined with chronic illness has honestly left me feeling a bit empty inside. But I haven’t given up yet. And I’m still searching for hope – just not in shoes, “miracle” cures, and unloving people. Those things will just keep leaving me empty. But hope in other good and beautiful things. I’m working on it…

There are a lot of losses in life, especially in chronic illness life. Things are not the way they were supposed to be. And if you ever find yourself sobbing over a bin of shoes outside a tiny storage unit or in some other crazy place, please know you’re not alone. Feel all the feelings; cry if you need to even if it’s over a bin of shoes. That’s the only way to move forward. Chronic illness and losses are really really hard, but we can get through it together.

The F-Bomb and Chronic Illness

A pretty common conversation in my therapy office when I’m working with women trauma survivors goes something like this:

“I really want to use the f-word, but I don’t know if that’s ok in here.”

“Go for it.”

“For 10 fucking years he…”

“I am so very sorry. That is a lot of fucking years to experience such fucking shit. You deserve so much better.”

And we both let out a deep sigh.

A well-timed curse word is not only appropriate, but also very healing. And those of us with chronic illness experience more than our fair share of those appropriate moments.

Growing up in conservative Christian circles, I was taught that swearing was never ok. And it was especially not ok for women and girls. We had to be “ladylike” at all times – which really meant always smile, always be polite, always use good manners, and for goodness sakes don’t express any sort of “negative” feelings. Swearing obviously didn’t fit into this 1950s-like scenario. So, I learned to just keep smiling, always forgive and move on, and most definitely to never curse. I now throw up in my mouth a little every time I hear a man refer to women as “ladies.”

And I’m here to tell you today, that what I was taught was all a big load of shit. Humans have feelings. Humans get hurt. Humans feel pain. And in my late 30s I finally discovered what I wish I had known sooner – that a well-timed F-bomb is a very good thing. And so very empowering – especially for a person who lived her whole life battling in and against places that sought to stifle my power.

There has actually been research to support this. For one it helps with pain management. And those of us with chronic illness have a ton of pain. It also releases stress, and in my therapy office I have seen it be a very effective emotional release.

As a chronic illness warrior, I experience a ridiculous amount of stressful situations every single day, and I’m sure all of you warriors do too. Ableism is rampant. Most places, even the ADA compliant ones, are at least partially inaccessible. There are never enough handicapped parking spaces. All my medical treatments are expensive and time-consuming. Parenting with chronic pain and mobility issues is really, really hard. We’re still in a never-ending pandemic, and my daily fatigue is off the charts.

Most of the time I just keep smiling, and while others admire this about me (and this strategy does have its time and place), it does nothing to relieve the stress that I feel. But, when I get the chance to say something like; “Why the fuck did this driver park their shitty truck right in the middle of the accessible curb?” it feels SO GOOD. I promise. It really does. Try it – at the appropriate time of course. The next time you stub your already painful toes, just let yourself say “Fuck!” It’s liberating. It’s empowering. And it also effectively reduces pain.

Readers – Tell me about your well-timed cursing experience in the comments. We’re all in this together. No shame. No judgement here.

Chronic Illness Burnout

It’s been a LONG while since I’ve posted anything to my blog. And I’ve missed writing. My counseling practice has been keeping me really busy. There are a lot of hurting people right now needing assistance with their mental health. This pandemic has been hard on all of us. And also, I’ve been struggling a lot with…

Chronic Illness Burnout.

It’s a real thing. And I don’t think it gets talked about enough. Many people with autoimmune disease, don’t just have one. Autoimmune diseases like to have friends, so we typically have multiple autoimmune diseases. And they can attack pretty much any part of your body – joints, skin, nails, eyes, digestive system, cardiovascular systems, nervous system, hearing, oral health, etc., etc. My multiple autoimmune diseases are currently attacking my skin, digestive system, and musculoskeletal system. But it’s also possible that at any point they could also attack my nervous system, eyes, mouth, and hearing. And side effects and comorbidities associated with these diseases and the medications used to treat them could negatively impact even more systems.

In our current medical system, each of our bodily systems is considered a specialty, which makes sense as our bodies are complex and no one physician is capable of being an expert in everything. So there are typically many specialists involved for any patient with multiple chronic conditions, especially for those of us with autoimmune diseases. I am currently a patient or a recent patient of a rheumatologist, gastroenterologist, dermatologist, pain management physician, orthopedic surgeon, neurosurgeon, functional medicine physician, physical therapist, massage therapist, nutritionist, dentist, optometrist, gynecologist, otolaryngologist (ENT), osteopathic physician, and last but definitely not least… psychotherapist. And then there are general practitioners – family physicians, primary care physicians, etc. – who are especially important in being the point person in managing a patient’s overall care. I’m sure that I’m leaving someone out – my apologies to whoever that specialist is. You are important too!

My head is spinning just thinking about all of this, and I had to take a short break from writing to put my head down and focus on breathing.

I average at least 2 medical appointments per week – more than any one person should have to manage. And just about every time I visit a new specialist, I accumulate one or more new diagnoses. Welcome to the autoimmune world. Sigh. And each of them requires different treatments. And of course… medicine, medicine, and more medicine… along with supplements and extreme and time-consuming diet changes to assist in helping the medications be more effective. I am thankful to live in a time when there are effective medications available to treat most of the autoimmune diseases that I have. Efficacy rates are no-where near 100% (vaccines are way more effective and safer too – btw) but still much better than other options.

However, these medications all have their own stressors. Biologics are remarkable and lifesaving. But they all carry a host of possible side-effects. And in my case my body seems to enjoy making antibodies to battle my biologics, and therefore I have needed to switch biologics just about every year. I am currently about to start my 5^th biologic in 4 years. It’s just waiting on insurance approval – talk about another big stressor. These medications are very expensive, and there is a lot that goes into switching them. Insurance approval; researching the specific side effects of each biologic; learning the dosing instructions; setting up infusion appointments (if they are administered through infusion); finding other patients to talk with about their experiences – pain level of each shot (they are all different), best place on your body to give yourself the shot, how long it took before other patients noticed benefits (It can take 3 months or more especially for my body, and everybody is different.), etc.; signing up for copay assistance programs; obtaining a sharps disposal container and other supplies; and so much more. Also, have I mentioned how expensive these meds are? Only the wealthiest people would be able to afford biologics without insurance and/or copay assistance.

Along with these medical stressors and necessities, all sufferers deal with related emotional and mental struggles too. Because of the great multitude of symptoms, many of us frequently second-guess ourselves. At least I do. Am I really in pain? Was my diarrhea really significant enough to be a problem? Did I actually see blood in the toilet or was it something else? Do I really need that mobility aid or am I overexaggerating my struggles? The list goes on… And because many of our symptom are invisible, most of us struggle with being believed by others. Which exacerbates our second-guessing. I second-guessed my GI issues so much that it wasn’t until I was in an extreme flare and needed urgent medical attention that I saw a GI specialist and was diagnosed with and treated for ulcerative colitis. If we need mobility aids, we constantly battle with accessibility issues – even at some doctors’ offices. We consistently have to advocate for ourselves with pharmacies, insurance companies, doctors’ offices, etc., etc., and I’ve found especially with psoriatic arthritis that not all rheumatologists are equal. It’s important to find the right fit. And currently one of my medications that I take in conjunction with biologics is on a shortage – so that is also partly responsible for my current struggles. There’s also the endless unsolicited advice, invasive questions, rude statements, and other issues I’ve discussed in previous posts. I find myself using etc. A LOT because it would take the length of a long novel to adequately discuss all the struggles and stressors sufferers face. And then there’s the day-to-day things that come along with working full-time and raising a family in the US.

I say all of this to say…

It’s no wonder that all of us sufferers will at one point or another (or at multiple points) struggle with burnout. I wish I had a magical piece of advice that would take all the stress and burnout away. But, as with most things in life, that’s not reality. There is no cure-all or magical solution. The best advice I can give to us sufferers is to be kind to ourselves. And have realistic expectations for ourselves. I am typically a great advocate for myself and others, so I expect myself to be able to thoroughly explain all my needs and concerns to every physician I visit. However, that’s not realistic because I’m also a human being. And I have serious fatigue and brain fog from all my illnesses. So, at my last rheumatology visit I wrote out most of my concerns ahead of time in an iPhone note, printed the note out, and just handed it to my rheumy while trying to explain how burned out I was. I basically told him that I really needed his help and direction. That was the best I could do in the moment. And I want each of you sufferers to know that you are probably also doing the best that you can do in this moment. And YOU ARE NOT ALONE.

Chronic illness and autoimmune warriors are the toughest group of people I know. We might not be out there competing as athletes at the Olympics or Paralympics (although there likely are some), but we are winning our own gold medals every single day. As a group we are strong, we are capable, we are well-informed, and we constantly endure. Despite the pain, mobility issues, and other struggles we keep going every. single. day. – Burned out or not.

Wherever you are mentally and emotionally in your chronic illness journey, it’s completely ok to not always be ok. We can take a break. Simone Biles is a great example – On the biggest gymnastics stage in the world with all eyes on her, she recognized that she was not ok and took a break. And she is still the greatest gymnast in the world. We can also ask others for help. Some of us don’t have that luxury, but for those who do don’t hesitate to ask for the help you need. We can stay in bed all day if we need to. And we are still enough. We are still strong. And we will continue to endure. Keep fighting fellow warriors. We’ve still got this!

Please comment on what has helped you deal with chronic illness burnout or how you’ve helped a loved one through it.

Dos and Don’ts if you Love Someone with Chronic Illness

Suffering with any chronic illness, especially multiple ones is physically, mentally, and emotionally exhausting. There are the physical symptoms that cause exhaustion, but there’s also so much emotional and mental energy that’s required as well to manage chronic illness. Between all the physician and pharmacy visits and phone calls, advocacy, treatments, medications, and self-care, managing my illnesses is another full-time job. Except this one doesn’t have weekends, retirement or other time-off. It never ends.

And because of all the stress, work, and exhaustion, having healthy support from significant others is crucial and life-giving. But on the other hand, having unhealthy “support” – even though it is likely well-intentioned is even more draining, hurtful, and exhausting. Having been a chronic illness sufferer for several years now as well as an advocate for others, I would like to give some feedback to those who care about a friend, family member, colleague, coworker, or significant other with chronic illness. There are definitely toxic people out there that are best to just avoid as much as possible, but I believe that most other people genuinely want to be helpful and not harmful.

So, here comes my non-exhaustive list…

DON’T GIVE UNSOLICITED ADVICE. This one deserves all caps. The #1 reason I hear for why people with chronic illness don’t share their struggles with others is the overwhelming amount of unsolicited advice that follows. I can confirm that this is a rampant issue for all of us with chronic illness. I have many personal examples… The funeral where an acquaintance I hadn’t seen for years had to come up to me and tell me about the cherry juice she saw a televangelist was selling on TV that would allow me to no longer need my arm crutch. The training I attended for my work where a total stranger gave me her business card and started telling me about how the diet plan she sold would be my cure-all. And so many more… Except for the people seeing me as a source of income for their at-home business, I genuinely believe that most people offering advice have good intentions. They just want their loved one’s suffering to end. The problem is that just about everyone who gives advice is convinced that their advice is the one thing that not only has the sufferer not heard of before but that it is going to be the answer for ending the suffering. Essential oils, yoga poses, supplements, diet plans, juices, food items… Unless you’re an expert in our specific illness (very rare), chances are that if you’ve heard about it, we have too. And we’ve either tried it already or know that it’s not helpful.

DO communicate that the sufferer is doing the best they can to care for themselves. Words cannot adequately express how meaningful it was to me when my husband, after a medical appointment where I was told I did something wrong simply for advocating for myself, put his hands on my shoulders, looked me in the eyes and said “You did not do anything wrong. You are really good at advocating for yourself. People are threatened by strong educated women.” My eyes immediately filled with tears, and I collapsed on his shoulder. It felt like a huge weight had suddenly been lifted from me.

DON’T offer toxic positivity. According to an article posted by Healthline, Dr. Jaime Zuckerman, a clinical psychologist specializing in anxiety disorders and self-esteem, defines toxic positivity as “the assumption, either by one’s self or others, that despite a person’s emotional pain or difficult situation, they should only have a positive mindset or – my pet peeve term – ‘positive vibes’.” https://www.healthline.com/health/mental-health/toxic-positivity-during-the-pandemic General examples of toxic positivity include chastising someone for being too negative, telling someone to just forgive and forget, “Just look at the bright side.”, “It could be worse.” usually followed by a story of someone else with “worse” issues, “Everything happens for a reason.” or in religious circles telling someone that God has a purpose for their pain, “It will all be ok.”, pointing out that the person doesn’t look that sick, and the list goes on… While usually (but definitely not always) well-intentioned, these responses only lead to a sufferer feeling more alone, unsupported, and ashamed.

DO offer lots and lots of empathy. Empathy is walking with a person through their pain and to the best of your ability imagining what it would be like in their shoes. Acknowledge your loved one’s pain and suffering. Let your loved one know that it’s ok to not be ok. That it’s ok to be tired, sad, and/or hurting. It means so much to me when my husband turns to me and says “I see how much in pain you are, and I wish I could take it all away. And I know that I can’t. I’m so very proud of you.” I feel seen, heard, and validated. And it’s so very healing.

DON’T hold onto unreasonable expectations. Chronic illnesses are so very unpredictable – even within the same illness. Some patients go into life-long remission with medications. And others continue to struggle and decline over time. Chronic means life-long. Just because my family and I take a vacation, doesn’t mean my illnesses also take a vacation. I will not experience miraculous healing while on vacation at Disney World. In fact, even a magical place like that while a lot of fun and definitely an experience to look forward to, might actually make my symptoms worse.

DO partner with the sufferer in advocating for and providing for their needs. Do your own independent research on your loved one’s illness(es). One of my biggest stressors is trying to make sure that my family and I are having fun on vacation while also ensuring that places are accessible for me. I felt so loved when my in-laws got a special license to drive their SUV on the beach. It’s a bit stressful trying to figure out how to physically navigate sand with kids and physical disabilities. Their being proactive meant so much to me. It also meant the world to me when my best friend told me she was doing her own research on ableism so that she could help to make things easier for me. And when I see my husband reading a book about one of my diseases and putting hours and hours of time and effort into making our home more accessible for me. Most of us with chronic illness worry that we’re a burden to our family and friends. So anytime you can make it easier for one of us means so much. It makes our mental, emotional, and physical load much easier to bear.

DON’T connect chronic illness with faith and healing. On multiple occasions I have sat through church services and heard the message that healing was there for me if I just had more faith. In other words, it was communicated that I am responsible for my suffering. This is spiritual abuse for a chronic illness sufferer. I do not deserve my suffering, and no matter how much faith I have or how much I pray, I will likely never experience healing. Sometimes shitty things just happen.

DO offer more than just prayers. I always appreciate knowing that people who love me are praying for me. But… prayers will not make meals magically appear or my house to magically clean itself or my wheelchair or rollator to magically start climbing stairs. You get the picture. People with chronic illness also need tangible help and support. We don’t always have the energy to make meals or clean our houses. Much of the world is still inaccessible to those of us with physical disabilities, and physical assistance is needed. Even financial supports, like disability income is inaccessible or unrealistic for many of us. We need advocates at all levels and in all places – are own personal worlds, the medical world, the financial and legal world, and in government.

Thanks so much for reading and sticking with me so far! This is by no means an exhaustive list. These are just the areas of support that I have personally found to be most beneficial or harmful. And if you’re a caregiver or just reading this and feeling exhausted, I see you. Caring for a loved one with chronic illness is emotionally, mentally and physically exhausting. And just as harmful and isolating as the DON’Ts list for us sufferers can be, the DO list can be equally healing and restorative. Thank you for all you do as a caregiver for someone like me. Sufferers don’t expect perfection from loved ones. No one is capable of that. We just need your best efforts and the ability to openly and honestly communicate with you. And please get your own supports. Support groups, therapists, friendships, etc. can be so very healing and helpful for caregivers and supporters too.

Chronic illness sufferers: Please comment with DOs and DON’Ts that you would add to this list as well as ways that others behaviors or words have helped or hurt you. I wish you all lots of love and support on this intensely challenging journey. Much virtual love to all of you!

Parenting, Special Needs Children, and Chronic Illness

Parenting in general is so so very hard. Even when all parents and children are healthy and there are no significant physical, emotional, or mental challenges. Parenting children with special needs whether it’s a physical disability, learning disability, emotional difficulties, or all of the above is even more difficult. And then when you add in parents with chronic illnesses and/or disabilities the difficulties become even more magnified. Families like mine have a trifecta of intense challenges. And then now on top of all the usual challenges, we’re adding a year+ long pandemic.

Let me describe my life this week. Keeping in mind that as I write this, it’s only Tuesday. But first, some background: My son has been doing an amazing job this year training for both his high school track team and preparing for his first high school soccer tryouts. Because of Covid-19, indoor winter track was held outside this year – in the cold. And soccer tryouts which normally take place during the summer months, were delayed until this week. So in between learning how to manage his ADHD for this entire year during virtual learning, every day he has been running in the cold for miles, weightlifting in our garage, and practicing his soccer skills outside in the snow. He is so very dedicated. In fact he has been training so hard, that some kind of injury developed in his leg. Despite my best efforts at encouraging him to rest and to not be so hard on himself, his high anxiety levels and depression have convinced him that if he doesn’t keep up this intense regime, he has no chance of making his school soccer team.

My daughter will be starting middle school next year, and because of the pandemic she has not stepped foot into a school building for almost an entire calendar year. I am very concerned about her ability to thrive in middle school while coping with her severe ADHD and anxiety. So for the last several months we have been going through the process of getting her the appropriate evaluations and meetings so that she can be set up with an IEP (Individualized Education Plan) before next school year.

Adding to that all the other outside stressors – Covid-19 vaccines, an aging mother, work, me moving to a new office, and a myriad of other things. And then there’s all my medical issues constantly happening at the same time. Which brings me back to this week. Monday morning I drove 1 hour each way to my 2 hour Remicade infusion. A necessary routine every 4 weeks to keep me functional and one that I’m very grateful for. But that’s a total of 4 hours. Meanwhile on my way there, I had to schedule a doctor’s visit for my son. He needed to visit our PCP for his leg issues. My husband canceled some of his work meetings and was able to take him to that appointment during my infusion. I’m so thankful for him. Lots of gentle hugs to you single parents with chronic health issues!

Typically people advise to take it easy after an infusion. If only… After this infusion, I rushed home to take my laxatives in time for my scheduled colonscopy the following morning. And then took my son to the radiologist to get an X-ray to check for a possible stress fracture. Afterwards we attempted to go to the running store to get him more supportive running shoes. Sadly it was closed yesterday. So we came home, and I put my colonoscopy prep in the refrigerator. For the rest of the evening in between drinking my prep (so gross!), struggling with nausea and abdominal cramps, rushing to the bathroom, trying to mentally prepare for my daughter’s first IEP meeting next week, and returning client emails and texts, I tried to be a decent human to my kids and husband. It was a long long day, evening, and night for me. Instead of sleeping, I spent most of the night in the bathroom on the toilet rocking myself back and forth and trying not to also vomit. Keeping it real. Lol.

Then early this morning I got my daughter logged in for school, headed out with my husband for my colonoscopy, and hoped and prayed that my daughter would be engaged in her virtual learning at the appropriate times. Finally I came home and spent the rest of the day trying to be at least a semi-decent parent while recovering. Because patients can’t drive the same day as a colonoscopy, my husband had to drive my anxious son to his first high school soccer team tryouts. And I tried to give him a calming and loving pep talk before he left to help calm his nerves. Then after tryouts my husband took him to the running store to be assessed for his super expensive but medically necessary new sneakers. Have I mentioned before how expensive it is to have health issues?

Yep. All of that. And it’s only Tuesday afternoon. Last week was almost just as draining. Parenting kids with special needs while managing my own serious chronic illnesses is so very very hard.

And to be honest I often feel guilty. I feel guilty for all the things that fly under the radar because I’m struggling with my chronic pain and disability, on the phone with a doctor’s office, on hold with a pharmacy or health insurance company, frequently at doctors’ appointments, etc., etc. I feel guilty that I didn’t think about my son needing better running shoes. I feel guilty about forgetting to remind my daughter to take a shower. I feel guilty about not checking my kids’ grades. I feel guilty about hearing from teachers when my kids have missed an assignment. I feel guilty about my kids not being able to attend school in person 2 days a week like other kids in our area because I’m so high risk in this pandemic. I feel guilty about… SO. MANY. THINGS. Many moms struggle with intense guilt, and us moms with chronic illness struggle even more.

But in reality…

I’m doing the very best I can do. And that’s all that can be asked of anyone. And honestly most people look at me and see a parent who despite her own struggles loves her kids well. When I stop feeling overwhelmed by all the day-to-day stressors and step back to look at the big picture, my kids are really really great kids. Even with, and especially because of struggling with ADHD, anxiety, depression, and a mom with chronic illness. My son is definitely more isolated and depressed this year due to our family’s need to quarantine. But he is also so very dedicated to the things he’s passionate about. He does more than most kids around the house because of all the tasks I can no longer do. He very rarely complains. He’s kind and thoughtful in his own ADHD way. And this year with being home so much he’s developed a great love for cooking. At this point, he’s acutally pretty close to being our family’s go-to chef.

My daughter may not be getting the grades she’s used to getting during normal school times and is spending a lot of time in front of screens. But, she’s also participating every day in school mostly on her own. She’s passionate about advocating for the rights of those less privileged than her. She funny and creative. She has great artistic skills. And she cares about, accepts, and loves other people well.

And most importantly, I try my very best to be present with my kids and make sure they know how very loved they are. Growing up with their own special needs and having a parent with chronic illnesses and disabilities has taught my kids so many great things – compassion for others, resiliency, responsibility, sacrificing for the needs of other people, and so. much. more. Not only are they not worse off with me being their mom, I think in many ways they are better people for it.

So for those of you with chronic illness struggling to care for your kids: You are doing your very best. And I see you. I see you sitting in pain watching TV or playing board games with your kids. I see you struggling to keep your eyes open and still helping with homework, loading dishwashers, washing clothes, giving hugs, and so. much. more.

We are not super powered people or super heroes. We are not perfect people or perfect parents. We are tired and in pain and struggling. But also… We are enough. And our kids are enough.

Leave me a comment and tell me at least one thing you’re proud of as a parent with chronic illness.

The Opioid Crisis and Chronic Pain Patients

Readers. I have so much to say about chronic pain and the difficulties and frustrations and trauma of trying to manage it. I will do my best to condense it for you.

First, let me try to put into words what it’s like living at high pain levels all the time. It’s indescribable really. But again, I’ll do my best. Right now I’m sitting in my wheelchair at my kitchen table writing this blog as I’m literally shaking from my current pain levels. They are so high at times like this, it leaves me breathless. I can’t stand in one place for too long because my knees, feet, back, hips, and butt ache too much. I can’t sit for too long in the same place either because the pain becomes unbearable. But obviously constantly moving is not really an option either. My wheelchair has been such a gift to me, but even that hurts my shoulders and neck from pushing the wheels. And don’t get me started on how expensive an electric wheelchair would be for me (I’ll devote a whole blog post to that dilemma.). The only time I’m able to almost completely block out my pain is when I’m meeting with and helping my clients and their families. Because I can solely focus on them and their needs. My own move to the background. And play therapy allows me to move around just the right amount. My job is my lifeline. I love it sooo much.

I have and am trying many things to relieve my pain. Steroid injections, high doses of prednisone (I’m still recovering from those side effects.), NSAIDs, nerve ablations, acupuncture, massage therapy, physical therapy, diet changes (I’m still working on getting better with that.), and my only source of significant help – biologics and other immune suppressants. On good days, those life-saving meds take me from a 10 to a 6 on the pain scale. My body hates me and is constantly attacking.

When received regularly massage therapy really helps. But it’s not covered by insurance, so I can’t afford to go any more than once a month. And even that hasn’t happened during the pandemic. Physical therapy on an ongoing consistent basis is also really helpful. But again, insurance. I’ve been discharged for lack of progress. Insurance companies don’t like for physical therapy to be a maintenance strategy. In the past NSAIDs were also marginally helpful, but I can no longer take them because of my ulcerative colitis. Everything else provided such temporary relief that it wasn’t worth the time or money. Well except for steroids, but with the side effects, I hope I never have to be on them again.

Soooo… I say all that to say that opioids have most definitely been a last resort. And as it is, I’m on such low doses (50 mg. tablet of Tramadol twice a day), that it really only makes my pain manageable enough for me to somewhat function and sleep (mostly) and still work full-time.

The opioid crisis is legitimately a crisis. As a psychotherapist, I have seen the devastating effects on those addicted to pain medications and their friends and family. In no way is this post meant to minimize the crisis and the mismanagement of opioids by the medical community that greatly contributed to it.

But we’ve swung way too far the other way. And I am shamed on a regular basis for needing Tramadol to function. And sometimes denied the pain meds I need. Often this is unintentional – it’s very much a systemic issue. And medical professionals in my life are usually just following the laws and regulations. Well except for the pharmacy that deleted my prescription from their system – that’s a whole other thing. Medical negligence and trauma for sure.

During my first really severe ulcerative colitis flare, I legitimately thought I might die. And I was in so. much. pain. Eventually and reluctantly I went to the ER. I chose Johns Hopkins because I thought for sure being one of the most renowned hospitals in the world, they could help me. I arrived at the ER to see signs posted everywhere that they don’t give out pain meds to chronic pain patients. What was I offered as an ulcerative colitis patient after waiting a really long time? A high dose of ibuprofen. Ummm. Ok. First I could have just taken that at home. Second as a UC patient, I can’t take NSAIDs. I was eventually sent home with no help. Probably more on that horrendous visit in a later post about medical trauma.

After having to already jump through numerous hoops and protocols to simply be offered even minimal opioid meds from my pain management physician, I have also had much difficulty getting my prescription filled almost every single month. First no refills are provided, so every month I have to schedule another appointment with my pain management physician in order for him to send another 30-day supply to the pharmacy. This part (other than the time and effort involved) I don’t mind so much because I have a highly skilled and compassionate pain physician. And I enjoy my visits with him.

Every month that he sends my prescription to the pharmacy, I get a text telling me I have to wait for my prescription to be filled because of state regulations. Often I have gotten an additional text from the pharmacy after waiting patiently for the day to come when they will fill it, saying that my prescription isn’t in stock and I need to transfer it to another pharmacy. However, the other pharmacy won’t allow me to transfer it (even within the same company – CVS for example) because it violates state regulations. If this happens on a Saturday, I have to wait until Monday to call my physician’s office and hope that he will send another prescription in for me to the other pharmacy. He always does because again he is kind and compassionate. Then I have to hope that the new pharmacy has Tramadol in stock to avoid repeating those steps. I then have to check back numerous times to ensure that the prescription is filled so that I can go to the pharmacy and pick it up. Regulations and laws prevent pain meds from being shipped to my home (even during a pandemic). Sometimes I skip taking my needed pain meds so that I have a few extra available for these circumstances. I just plan on not being able to sleep those nights.

In addition to these hurdles, my pain management physician’s office is required to subject me to random urine tests. During these tests I’m not even allowed to flush the toilet or wash my hands until my urine is handed over to the staff waiting right outside the door.

Again, I totally get it. There is a real crisis. But, there has to be a better way of treating chronic pain patients. Because all of this is not only shaming, but it keeps me from getting the treatments I need to function. I suffer needlessly on a regular basis. The pendulum needs to swing back more to the center.

So, please stop shaming chronic pain patients. I am not addicted to my pain medication, other than simply needing it to function and continue helping my clients and my own family. Not everyone becomes addicted. I am under the care of a very careful and compassionate physician who regularly monitors me.

And for those chronic pain patients like me needing opioid meds to function: I see you and I hear you. Taking your meds is not shameful. You are not an addict. You are not a drug seeker. You are a warrior.

Pandemic Expectations and Chronic Illness

Confession: This past year I have been spending a lot of time – A LOT – on binge watching shows on various streaming networks and playing games on my phone. And I’ve decided to be totally ok with this. Because I have multiple chronic illnesses and I’m living through an historic pandemic.

Something that I’ve been thinking about a lot over the past year and that has become more and more apparent in the pandemic is our society’s addiction to productivity. And placing value on people based on how much activity they can do, how much money they can make, how much they can produce. What a student’s grades are. Our worth in society is very much tied to how productive we are.

This is a big problem for those of us in the chronic illness community and has a dramatically negative impact on our sense of self-worth and self-acceptance. And it’s become a big problem for all of us in a pandemic. If someone had told me five years ago (pre-chronic illness) that I would be spending so much time binge watching shows and playing phone games, I would definitely be harshly judging myself. But here we are.

The pandemic has impacted all of us. Activities have been canceled, schools have closed, and many places are still closed or open in a limited capacity. At first everyone seemed relatively content to live a slower-paced life and spend more time at home. But very quickly, this idea wore off and most of us have longed to go back to “normalcy”.

But almost a year later things are still not normal. And they can’t be. Covid-19 is worse than ever in my area. Our local hospital is almost full to capacity. Multiple friends and acquaintances of mine have become very sick or died. This is very much not normal. And yet, many of us have reverted back to our “normal” expectations of productivity. While I am in no way minimizing the huge detrimental losses this pandemic has had on many people’s livelihoods and finances because it’s heartbreaking, I do want to talk about our society’s productivity expectations.

As our hospitals are dangerously close to overcapacity, schools in my area have reopened for in-person learning. The main reason stated? Kids have failing grades; kids are struggling. They are, truly. There is no question that kids are really struggling. But why? My thoughts? In large part because they’re not meeting “normal” expectations. And because “normal” expectations and productivity is considered so very important in our society, many are willing to risk safety to continue achieving them.

But we’re in a pandemic. People and kids especially are depressed and anxious and lonely. And all of these emotional struggles take up a lot of our mental and physical energies. “Normal” expectations are not achievable or realistic right now. And maybe they never were? We need to be kind and generous and loving to ourselves and our children. We need to have pandemic expectations. And a new, better, more healthy “normal”.

Chronic illness people need to be especially generous to ourselves in our thoughts and feelings and expectations during a pandemic. But also, always – even when the pandemic is over. It takes us chronic illness warriors at least 10 times (and for some more) the amount of energy to complete everyday tasks. Tasks that didn’t even take me a second thought five years ago. There is no way that I can currently meet my previous expectations for myself. And therefore, we need to ignore our society’s unrealistic expectations of productivity.

I think if we were all a bit more generous to ourselves and others, especially us chronic illness warriors, we would see dramatic improvements in our mental health. I am not lazy if I take a nap, watch TV, play phone games, skip my regular workout, take a day off from work, work less hours, let my kids play on their electronics past the recommended time limits, miss responding to texts or phone calls or emails right away, etc., etc. In fact, phone games actually play an important role for me sometimes in distracting me from my high pain levels.

I’m not talking about extremes such as neglecting your children – I was neglected as a child and it was very painful – or neglecting other important responsibilities. But just some healthier adjustments to our schedule and routines and expectations.

Productivity is not the highest goal. Let’s stop shaming ourselves and our children. Yes – unrealistic expectations right now are shaming even though that is not their intent. We’re surviving a pandemic. I’m surviving serious chronic illnesses. We’re all learning resilience. We’re all learning (hopefully) how to put others before ourselves. We’re all hopefully learning how to love ourselves and others better. Moving forward let’s find a better more healthy “normal”. Our current one is not really working for us.

I am still valuable and worthy even if all I did during a day is snuggle my 10-year-old while she watches her favorite shows. My worth and yours is not tied to how much we got done today. Love yourself. Love your kids. You and they are worth it.

Leave a comment and let me know how you’re being generous to yourself. What have you allowed yourself to do to recover or save mental and/or physical energy or cope with chronic pain during this pandemic?

Puzzles, Deserts, and Chronic Illness

I took a much needed work break from Christmas Eve through New Year’s weekend. It’s been a privilege and a necessity for me to help people through this challenging time. But Because of the pandemic this was my only time off in all of 2020.

One of my accomplishments: Putting together a 1000 piece puzzle – a picture of desert succulents. And that was my inspiration for this post. A puzzle is a great metaphor for life. And chronic illness very much resembles a journey through the desert.

Life often feels like one big puzzle with a series of mini puzzles along the way. It’s filled with lots of broken pieces, confusion, frustration, joy, feelings of accomplishment, and sometimes all of those at the same time. And just when you’re about to give up, someone important – a therapist, friend, family member, colleague, etc. (in the case of this puzzle one of my family members) – comes along and helps you put a crucial piece in that gives you the momentum you need to keep going. Also, sometimes just turning the puzzle and seeing it from a different angle or perspective helps so very much. And sometimes only when we get to the end of a puzzle or a puzzle section do we see the beauty in it and how all the pieces (even the boring gray ones or the challenging edges ones) fit together perfectly in the finished product.

Chronic illness can especially feel like a puzzle. Lots of various puzzling symptoms appear with no idea of where to begin or what specialists to see to figure it all out. My journey to a psoriatic arthritis (PsA) diagnosis started with a physical in my primary care physician’s office in which I casually mentioned having some joint and back pain. This led to an MRI which led to an appointment with a neurosurgeon which led to physical therapy which led back to my PCP’s office and a subsequent referral to a rheumatologist. This puzzling maze concluded with an appointment with my rheumatologist who I’m convinced is the very best physician on the planet. I just happened to get lucky enough to see a rheumatologist who specializes in PsA, and he put together all of the pieces of the puzzle for me. Psoriatic Arthritis. I say I was lucky because not all rheumies are created equal, and many PsA warriors go undiagnosed for decades until they find the right one.

Even after a diagnosis and an expert rheumy, PsA can be very puzzling. The skin issues, eye issues, comorbidities like my ulcerative colitis, mental health issues, medication trials, medication side effects, etc. etc. The same diagnosis looks drastically different in different people. And the various medications available work for some patients and not for others. Success for some looks like complete remission and for others like me it involves going from a 10 on the pain scale to a 6. But even that change meant me progressing from being completely unable to function to working full-time. And a few sadly feel no relief from all available medications.

Also, symptoms can still be very puzzling even after diagnosis. For over a year I suffered with mysterious lower back pain. Different specialized physicians came up with different answers – lumbar spine issues, hip issues, pinched nerve issues, etc. My PCPC sent me for more MRIs and my rheumatologist referred me to another neurosurgeon and a neurologist. The neurosurgeon then referred me to a physical therapist and a pain management physician. Finally, through the combination of physical therapy and pain management, I discovered the main source of my back pain – sacroiliitis: inflammation in my SI joint which is a less common and very debilitating symptom of PsA. It takes just the right team of healthcare professionals to diagnosis and treat chronic illness. I have a primary care physician, a rheumatologist, a gastroenterologist, a pain management physician, a dermatologist, a psychotherapist, a physical therapist, a massage therapist, an optometrist, a gynecologist, and a dentist. In the past I’ve also had other alternative practitioners, like an acupuncturist for example. I think I mentioned all of them? Lol. And more on the insurance struggles in covering or not covering all of this care in a later post. PsA is very puzzling indeed.

Now on to the desert analogy…

Chronic illness is very much like a desert journey. Unless a person is lucky enough to achieve full remission and stay there, symptoms never go away. And it’s impossible for any other person to truly understand the experiences of a chronic illness sufferer. Even among sufferers with the same diagnosis, the journey is very different for each person. And it often feels very very lonely.

Most healthy people choose not to go through the desert with you. Because it’s hard. I no longer have the energy or physical ability to plan large social events. There are many activities I can no longer do. I don’t play the social games anymore. And I have to choose very wisely how to best spend my limited energy. As soon as I feel inspired I will devote a whole post to the grief and loss involved in chronic illness life.

But when I put together this entire puzzle, I discovered that there is still an awful lot of beauty in the desert. It’s much harder to find for sure. But it’s there. And I’ve found the beauty to often be much better here in the desert. I don’t waste energy on toxic people and toxic places. I found who my true friends and family are. And instead of always only serving others, I’ve allowed those people to experience the joy of serving me.

I am a better person. Much more empathetic, more aware of the needs and challenges of others, more aware of my surroundings, more aware of the things and people that truly bring me joy. I love myself more. I’m less busy, less hurried, and much more focused. And I enjoy my life so much more now. I’m very thankful for the people still in my life and the joy they bring. Life is now truly beautiful. And I hope it is for you too. There is still lots of life in the desert.

Leave a comment and let me know the beautiful things or people in your desert journey.