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.