Tag: Pandemic

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 5th 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.

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?

Chronic Illness, Mental Health, and the Pandemic

I’ve been wanting to write about chronic illness life during a pandemic for quite a long time. But, there’s so much to say and unpack that it’s been hard to narrow it all down to fit into a blog post. And also hard to articulate all the things. Especially the very hurtful parts. But, it’s such an important topic to discuss, that I will try my very best. I won’t be able to cover everything but hopefully enough to explain how very hurtful this year has been to me and my chronic illness community.

First I very much need to start with a shout out to my fellow spoonies – a term used to identify those of us with limited energy due to chronic illness. Check out the spoon theory link in my Accessibility Matters post. We are rock stars in this pandemic. First, we’re already used to having to stay home not by choice but because our health issues require it. Second, those of us with disabilities are used to having many activities inaccessible to us. And third, we’re used to being uncomfortable and always in pain. Typically we are not complainers. In fact, I would argue that we need to “complain” more to alert others to our needs. We were made for 2020.

But…here comes the hard part. The reactions of many in the able-bodied population has been so very hurtful. Minus the first 2 weeks or so when it felt like as a global community, we were all in it together, I cannot tell you how many times I have repeatedly heard the idea in one form or another that people miss “normalcy”. And that the way to go back to “normalcy” is for those of us in the at-risk population to stay at home. (Normalcy is in quotes because what is normal?)

Usually this is manipulated into some form that helps the people saying it feel like they are caring for us. But in reality it’s just a strong form of ableism. It communicates that the world can go on without us. That we do not add enough value to society. That we are not worth sacrificing for.

Perhaps the most hurtful part of all of it is the reaction of the majority of the faith community I’ve devoted my whole life to and their push to continue with in-person services. A community that professes to love everyone, to be for the least of these, to be a safe place, to welcome everyone. When in reality, many of these churches are content to go on without us. “Normalcy” is more important.

Fortunately, I am thankful that I’ve found a faith community who continues to actually include everyone. Who has come up with very creative ways to virtually include everyone. Proving that with extra thought and care, it’s very possible. My family even got to participate in a virtual Christmas pageant. Share in a comment the creative ways your communities have been safely including you or other vulnerable people during 2020.

The other very hurtful part, especially for me, is when people use “mental health” as an excuse to return to normalcy. I am not arguing that social distancing and quarantining isn’t hard on our mental health. Of course it is. Those of us in the chronic illness community have been talking about that for years. But here’s the thing… I’m a mental health provider. And I have been working tirelessly throughout this pandemic to care for the mental health of children and families. Those struggling with virtual school, anxiety, depression, “pandemic fatigue” (as I like to call it), ADHD, trauma, and so many other issues. And those same people, are saying that I should just stay home. See the problem?

The chronic illness community is large. We are everywhere doing important things. We are psychotherapists, nurses, physicians, teachers, retail workers, and every other essential job you could think of. These are not jobs that can be done while staying at home. Some of my clients have thrived through teletherapy, but many of my youngest clients and those with ADHD, autism, or other concerns have continued to need my in-person therapy services. While teletherapy and telemedicine have made very important advances during this pandemic that I hope continue, not every need can be fulfilled in these formats. Chronic illness people are important people with important jobs and important families. We are worthy of the sacrifices of others. We are worthy of the protection of others.

The quest for “normalcy” in the context of this pandemic is just another form of the age old problem of ableism. 2020 has been a hard year for all of us. And I am not minimizing in any way the mental health struggles of everyone. But in the quest to get back to “normalcy”, think about the mental health needs of those of us in the chronic illness community too.

Every work day, I get my rollator out of my trunk, roll myself and heavy work bags to my office, put on 2 masks for hours at a time, joyfully and happily help my clients (I truly do find it to be a great privilege to help others), disinfect my entire office after every session, and then come home to my social media feed filled with “friends” telling me in one form or another that I should just stay home. Or those complaining about wearing a mask. Even from a few outlying medical professionals whose ideas get shared repeatedly on social media despite contradictory scientific evidence. As soon as I think I’ve unfollowed all the guilty parties, someone else unexpectedly shares this same idea. Think about the impact that has on my mental health and the mental health of others in my chronic illness community working tirelessly during this pandemic to help others.

We need to abandon black and white thinking. The world is full of all sorts of beautiful colors. Yes – this pandemic is hard on everyone. Yes – we are all grieving many losses (myself and my family included). But also yes – with creativity and ingenuity we can figure out safe ways to serve many of the mental, emotional, and physical needs of those most vulnerable among us. But only if we are truly all in this together.

As we’re starting a new year and nearing an end (hopefully –make sure to take your vaccine when it’s offered to you!) to the Covid-19 pandemic, let’s start over. Let’s use our energies to stop arguing about how to best serve others and how to help with mental health in the context of “normal” times and start creatively thinking about safe ways to actually accomplish those goals in pandemic times. Let’s make a new better normal. Together, including those of us with chronic illness, we can accomplish much. Happy (hopefully) New Year everyone!