Written by: Morgan Lennon
I’ve been dreading writing this blog. Since we put it on the schedule, I’ve been ardently avoiding this line on my to do list and doing everything else instead of writing. Here’s why: I have an autoimmune disease and it’s tough for me to talk about. Finally being diagnosed and then having to admit that I am not a superhero, and can not take everything on myself, has been a difficult process.
A little backstory: for years I bought into the narrative that all of my symptoms were the product of character flaws. I didn’t want to go out with friends, because I was anti-social. I would sleep for 14 hours at a time, because I was lazy. My joints and muscles were sore, because I wasn’t exercising correctly. I have skin conditions, because I wasn’t investing enough time and money into researching the right skin care products. I had daily headaches, because I was too tense and not stretching enough. It was all an issue of will power and if I just tried harder, I would feel better.
Every time I went to the doctor, I had to give them a lengthy medical history, and they still treated me like I was a hypochondriac. They’d say: “That’s a lot of health issues for someone your age”. I would bring up one of the symptoms I was experiencing and was told to “not worry about that”. I was getting sick all the time because “you work with children”. And the magical cure-all, my personal favorite, “maybe if you lost a little weight you would feel better”. It’s exhausting to know something is wrong with your body, but everyone is telling you that you’re fine, that all the health problems are not related. And you start to believe them. It’s probably why I have such a hard time talking about it. I feel like people just won’t believe me and that the reason I don’t feel well is somehow my fault.
When you have an autoimmune disease, your immune system misidentifies healthy tissues or organs as being foreign, causing the body to produce antibodies that attack its own tissues. They’re chronic ailments and can affect almost any part of the body, including the heart, brain, nerves, and muscles - and each disease carries its own set of symptoms, with inflammation almost always being one of them. They’re also extremely difficult to diagnose, and there is no cure for them once identified.
When my neurologist finally diagnosed me with an autoimmune disease this summer, I practically skipped out of her office. I felt validated. I felt seen. I felt heard. What I had been feeling for so many years had a name, there were medications to help manage my symptoms, and it gave me permission to stop beating myself up. Now, that’s not to say that I don’t still struggle with being judgmental of myself, but I am learning to be more compassionate. As RuPaul says “If you can’t love yourself, how the hell you gonna love somebody else”. The kinder I am to myself, the more compassion I can give to others.
So, here’s are a few ways to be more compassionate if you know someone with an autoimmune disease:
Nothing feels worse than when people tell you that what you're experiencing isn’t real. Just because you can’t see it, doesn’t mean it isn’t there. Sometimes the best gift you can give someone is validating their feelings.
Don’t give unsolicited medical advice:
“You need to eat more antioxidant rich foods.”
“You should try cupping. It changed my daughter's life. It will make you feel so much better!”
Now listen, I myself am guilty of this one. I think it's a natural human reaction to see someone suffering and want to help them, but I think it’s important to remember that someone’s health is a deeply personal subject. And for those of us who suffer from a chronic illness, our symptoms are just that, chronic. Yes, medication helps. Yes, lifestyle changes help. But they never go away. Trust me, if there’s a chance that something can make me feel better, I've tried it. I know people's intention is to make me feel better, but often it feels like you have to defend why you don’t feel good and why those things didn’t work for you.
As part of my autoimmune package deal, I also happen to have celiac and a hard time being in direct sunlight. On top of the physical symptoms, chronic illnesses can make you feel isolated and high maintenance. When hanging out with friends or family, we have to eat at restaurants that have gluten-free options and do activities that don’t involve too much sun.
One of the kindest things you can do for someone who needs accommodations, is to take those accommodations into account when planning. When my friends pick a restaurant that has a whole gluten-free menu, it is literally the most exciting thing. Seriously, if they have gluten-free bread, I lose my mind.
There’s no one size fits all answer on how to make life a little easier for those of us with an autoimmune disease. It’s an ongoing journey. We ride the waves of good days and bad days, with the possibility of a flare up always looming. So just remember: be patient, be kind, be understanding - and when in doubt, a surprise bag of brownie bites on my desk is always helpful.