Ever have a day where you're mad at your body because it won’t do what you want it to?
Because it won't heal fast enough.
Because it won't run as far, lift as much, or work as hard.
Because it won't let you go to the gym or meet up with friends.
Ever feel frustrated, overwhelmed, or just plain bitter when you have to change your plans because of your autoimmune disease?
Because you can't eat whatever you want (without a reaction).
Because you can't work as much as you want (without flaring).
Because you can't go to the gym for a little stress release (without feeling worse).
I was diagnosed with an autoimmune disease at age 14. As I've tried a variety of treatments and management plans over the last 15 years, I've been upset with my body (and disease) on numerous occasions.
Mad because my back hurt.
Mad because I couldn't braid my hair without taking a break.
Mad because I was always falling apart.
... And mad because I couldn't do what I wanted to do at the gym.
It can be frustrating to feel like your body is attacking itself (and therefore attacking you). It's hard to feel like you don't have any control, that you can't do the activities you used to do (and love), or like your body is constantly changing (always without your consent).
On top of that, it can be really hard to feel like the one place you used to go for relief isn't actually a thing anymore. Because when you're struggling with autoimmune disease, your body might not let you go to the gym, head out for a run, or take your frustration out on a punching bag. Or, if you can make it to the gym, you might not be able to do everything you want to do once you're there.
After an autoimmune disease diagnosis, we often receive a lot of recommendations for lifestyle and stress management tools that can complement the care we receive inside a doctor's office.
We're often suggested to do things like:
... Just to name a few.
While these are generally great suggestions, those handing out these recommendations might not also explain what to do if and when these tools don't actually work for us.
I've been asked twice in the past week about the things that have made the biggest difference in how I feel. One ask was from a friend who has shared a lot of conversations with me about autoimmune disease, chronic illness, and health -- and the other was a question from a mentor of mine.
In both situations, I was sharing an update on life: talking about my health, how I felt, and passing along the exciting news: I'm off medication for the first time in 9 years and feeling really, really good. (When I say good, I mean both physically good but also good about the decision to taper off medication under the supervision of my doctors.)
As I was sharing the news about this new relationship with health, both my friend and mentor asked what I thought made the biggest difference. What's helped me manage and even alleviate my autoimmune symptoms?
This is what I said.