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.

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.

Accessibility Matters

This is my work building one week after a moderate snow storm.

Just because a building is “APA compliant” doesn’t mean it’s actually accessible.

  • Leaving disability friendly pathways and ramps uncleared.
  • Plowing snow in a parking lot and dumping big piles of it in the handicapped spaces
  • Overgrown landscaping
  • Uneven sidewalks
  • Broken elevators
  • Not giving fines to cars illegally parked in handicapped spaces
  • Disability friendly entrances only in the rear of buildings
  • Not giving fines to cars blocking yellow accessible ramps
  • Stores with displays in the middle of aisles

These are just a few examples of legally accessible spaces not actually being accessible. I know those of us in the disabled community can list off many more examples. And this doesn’t even include spaces where there is no attempt at accessibility.

For me the hardest part about being disabled is living in a world not made for me. And all the places that used to be readily available to me. Beaches, restaurants, stores, pathways, hiking trails, historical sites, theaters, school events, fieldtrips, etc., etc. are all either much more difficult or entirely impossible to navigate with my rollator or wheelchair. I spend many hours before every outing researching the accessibility of each location. Even protests for social justice movements are often not inclusive of or accessible to disabled people.

Society sees disability as the problem, but I blame society. Disabled people like me are normal people. Not only are we not a burden; we are a blessing. And many of us have important jobs, children, partners, spouses, and full lives. We are everywhere. Accessibility should be the norm. Not seen as an obstacle or annoyance. Businesses should joyfully make their spaces available to all their potential consumers. I happily support any business that makes their space readily accessible to me. That treat me as a normal person. Not as an extra.

Even typically accessible places are often made temporarily inaccessible. By able bodied people parked illegally in handicapped spaces; cars parked on the yellow accessible curbs; elevators not readily repaired or replaced; snow left on handicapped parking spaces and in front of accessible curbs; able bodied people using the only handicapped stall in a bathroom when other stalls are empty. All of these examples happen to me on a regular basis. They are all typical obstacles for me on my way into work.

All of this inaccessibility needs to change. It is already hard for disabled people to navigate a world made for abled bodies. Let’s all work together to not make it even harder.  Don’t use handicapped bathroom stalls unless you need them. Never park illegally in a handicapped parking spot for any reason or for any length of time. Never block accessible areas on curbs for any reason. You never know when a disabled person will need to use those spaces. And whenever possible report able bodied people for using services meant for disabled persons. I have the Westminster City Police (the station just down the street from my therapy office) phone number saved as a favorite in my phone for this reason. Not to be cruel or mean or vindictive. But to help create a world that’s more aware of and accessible to the needs of disabled people. Advocate for inclusiveness in your community.

I am so very thankful for organizations and companies who create products that make difficult places more accessible. Access Trax is a great example. http://accesstraxsd.com

Disabled Hikers rates hiking trails for their accessibility and how many “spoons” it might take for a disabled person to navigate. http://disabledhikers.com

And for those not familiar with The Spoon Theory, check it out here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I’m sure there are many other organizations advocating for accessibility. Let me and my readers know about them in a comment.

However, even with a great company like Access Trax, disabled individuals and/or their families need to have the funds available to purchase their own equipment, making it still inaccessible to many. The next step would be communities readily providing these products as free services for disabled community members or visitors. Or utilizing other methods to make places accessible – ramps, boardwalks, flat trails, etc., etc.

Let’s work together to make a more inclusive accessible world. Disability is not the main problem. Accessibility matters.

The Gift of Mobility Aids

My mom is 80 and has a lot of trouble walking. Pre-pandemic and post-pandemic, I would love to be able to take her to events and places that we can enjoy together. But I can’t physically assist her because of my own disabilities. She has finally started using a cane full-time, but only because she is completely unable to get anywhere without it. She also has a rollator, which would give her and me the freedom of going on outings, but she very rarely uses it, especially in public places. This severely limits our activity choices.

Almost every time I have asked others to help encourage her to use her rollator more often, I’m met with resistance. Pretty much every time the response is that when elderly people start using rollators, they quickly deteriorate. My guess is most likely due to emotional and psychological factors involved in needing one. But ummm…wait. What?!

How sad. This may very well be a common occurrence, but…

It doesn’t have to be. Like with many other issues and things, we need a perspective change.

From my own experiences with mobility aids I understand the mental and emotional struggles. After over a year of intense pain in my back, si joints, hips, etc. I wondered if a cane might be necessary. So for the next month I struggled with the following questions:

Do I really need one?

What will other people think?

Will my doctors think I’m being ridiculous?

How will my friends and family feel about my cane?

Will I embarrass my middle schooler if I use my cane during school functions?

Will people think I’m too young for a cane?

Am I overexaggerating my physical disabilities?

How do I even use a cane?

How will I carry things?

Etc. etc.

I read a comment posted recently by one of the insightful disability activists I follow. I wish I could remember which person so I could give them proper credit. But basically they said (in paraphrase) “If you are wondering if you would benefit from a mobility aid, you probably would.” That is such a great perspective shift.

After a month of thinking and worrying and agonizing and talking with my therapist, in December 2018 I finally ordered my first cane – a super cute walking stick by Switch Sticks.

For the first week I used it only around my house. And I watched a lot of YouTube videos about how to properly use a cane. First because I’ve always been a very uncoordinated person, and I needed a lot of practice. But also because I was still so very worried about what other people would think. I was 41 and otherwise healthy looking on the outside.

Finally I ventured outside of my house with it. I took it to my therapy appointment. That was quite the achievement! And I’ve never looked back. I know this is not everyone’s experience, but I actually received only positive comments. “That cane is so cute! I have MS and have been looking for one. Where did you get it?” “You are the most adorable cane user I have ever seen!” And lots more comments and love in real life and on social media. Many thanks to those who helped me on my journey! Even the curious questions: “Do you mind me asking why at your age you need a cane?” I use as opportunities to educate about psoriatic arthritis and other autoimmune diseases.

Since that time I have taken advice from my physical therapist and switched to an arm crutch. This change was no big deal for me (minus being sad about trading in my super cute stick). And it’s easier on my hands, elbows, and shoulders.

I also added a rollator to my mix of mobility aids in 2019 and a wheelchair in 2020. My rollator was really hard at first too. But, I’m so thankful for my physical therapist who gave me the “permission” I needed to get my rollator. And now I gladly use it just about every day. I can no longer carry the gear needed for my job – laptop, medical supplies, etc. It’s a lot, and so much easier now that I can put it on my rollator and wheel it and myself from my car to my office.

My wheelchair is another transition that I’m still working through. And I don’t need it very often, especially since starting Remicade infusions. Mostly in the mornings at my house before my joints and tendons warm up. I worry though about the stares from people, how my family feels about it, and whether I really need it. But, on my birthday this past year, I finally ventured out of my house with it. My husband took me to Baltimore City, and after a night of fun (just going to a restaurant – not anything super crazy. Lol.), the next morning was tricky for me. And my wheelchair was so very helpful that morning for breakfast at the hotel and then the trek from the hotel to our car in the parking garage. And then I used it again for an errand run on our way home. Go me! I’m really proud of myself for that. Both were successful experiences.

In short, mobility aids have been so very empowering for me and have helped bring more joy and opportunities into my life. I would have missed out on a lot without them. They allow me to keep up with the job and other activities I love. I am able to care better for my family. So, I present some more helpful questions to ask yourself when considering a mobility aid (even for the elderly):

Am I missing out on fun events because of my mobility issues?

Would mobility aids give me more freedom?

Could I do more and/or go more places with the use of mobility aids?

What would my life look like if I wasn’t concerned about what others think?

Am I often relying on the help of significant others because I don’t want to use a mobility aid?

Am I considering the use of mobility aids? If so, they would likely be helpful. What other questions can you think of that would be helpful to add to this list? Leave your ideas in a comment.

Please Don’t Touch

Last week I ended my therapy sessions on Friday evening, hobbled down the stairs outside my office, and looked forward to heading home and crashing…

Only to find that someone had touched and moved my rollator. It really upset me.

I was coming out of one of the worst psoriatic arthritis flares I’ve had in a long time. I was exhausted and having trouble moving. And now I had to go back up the stairs with my work bag, medical supply bag, purse, etc. (because I don’t feel comfortable leaving them unattended in my office building) to get my cleaning supplies. Because we’re in a pandemic and all of my medical conditions put me at higher risk, I need to take every precaution necessary.

After several trips up and down the stairs, my rollator was completely disinfected, and I was ready to start the long walk (for me) to my car to end my work week. But the level of upset I still felt surprised me. It was more than the use of my time and energy or possible Covid exposure. And I realized…

I felt violated.

Let me first explain why I park my rollator in the hallway of my office building. My office suite is on the 3rd floor of the building. It’s an old building and because of the layout, the elevator can only go up to the 2nd floor. And it’s quite a long stairway up to my office. I park my rollator at the bottom of the stairs, and up until now people have been really respectful and have left it alone.

Before you ask (lol) – I signed my office suite lease 13 years ago before being disabled was even on my radar. And sadly also before the accessibility needs of the disabled community was on my radar (of which I am now acutely aware – more on that in a later blog post). Ableism is a real thing, and I was very guilty too.  Thankfully, after a long hunt for another perfectly laid out space, I just signed a lease for an accessible first floor office suite in the same building! Woohoo!

Anyways… Back to feeling violated. Mobility devices are crucial for the people using them. My rollator and my arm crutch are the only ways I can get myself and all the supplies I need for work to and from my car. They are a necessity, not a luxury. And each person, if financially able, chooses their specific aids to meet their specific needs. I have an arm crutch because a simple cane was aggravating my hands, wrists, and shoulders too much. I purchased the specific rollator I have because of its comfy seat and seat backing (for my painful si joints and lumbar spine), its storage space, and its ability to carry my work bags.

Mobility devices are very expensive, especially ones that are specified for an individual’s personal needs. And because of the limits of insurance coverage, most people have to pay out of pocket for their mobility aids (more on that too probably in a later blog post).

Two summer ago (pre-Covid) my family went to Hershey Park. The accessibility program there is fantastic! But, for one of the rides I had to park my rollator and use my arm crutch to enter the ride area and wait for the next car. I watched helplessly as a small child played roughly with my rollator. I wasn’t upset with the child – they saw a “fun toy” and wanted to play with it. The upsetting part was the mother looking on and saying and doing nothing. Giving the child permission to use my expensive mobility device. Not ok. Breaking it would not only cost me a lot of my own money but would also keep me from being able to get around the park and future places with my family.

Kids are curious. One of my sweet little clients once picked up my arm crutch and started using it in his play therapy session. I think it was a light saber, and he was battling Kylo Ren. It was an innocent mistake. I didn’t shame him or discipline him. I used it as an opportunity to educate him about disability etiquette and the importance of respecting disabled people’s mobility devices.

Also, many view their mobility devices as an extension of their body. This is especially true for full-time wheelchair users. When you move a person’s wheelchair without their permission (especially when they are sitting in it), it’s equivalent to pushing an able bodied person out of your way.

For me, moving my rollator without my permission is equivalent to taking my car for a spin without my permission; playing on my iPhone without my permission; hacking into my bank accounts without permission; etc. etc. You get the picture. It’s violating.

No one wants to be violated, especially during a pandemic. So now I have a Do Not Touch sign on it in the hopes that it won’t be moved again. Please never touch another person’s mobility device without their permission.