Working Out While Chronically Ill
It's a challenge. I mean, obviously, right? But I'm one of those people whose flare days are few, and I've learned how to realign most of my joints on my own after they pop out.
Which sounds insane except to my fellow Zebras—folks who live with Ehlers-Danlos Syndrome.
They call us "Zebras" because diagnoses "aren't always black and white". It took me most of my life to get my formal diagnosis.
But oh! how my world made so much more sense when I did.
I also have endometriosis, some lung fun, some immune fun, medicine reactions that range from nothing (morphine) to extreme (progesterone), scoliosis, knocked knees, pigeon toes, nerve damage in my shoulders, and on and on.
Oh! And with my chronic pilonidal disease and two surgeries on that area, most pilates moves I used to love are right out!
So, Rachel, how the fuck do you workout with all that!?
Carefully. And by giving myself a lot of grace.
There are some things I just can't do the same way that others do, or that I have to modify. It took me a long time to not feel guilty or upset about not always doing things the "right" way.
Because the "right" way isn't always right for someone like me.
I used to get on myself about not breathing properly while running, because that's what my track coach would do. But after experimenting with it recently, I realized the "regular" way is harder for me. My adaptation works for me.
I often have to start with far lighter weights than I'd like with far more time between move-ups. But, that's okay. I pace it out and listen to my body.
If I'm using a workout video or whatnot, I skip the moves I know my body cannot do. This might seem sacriligious. Like, "Just try it" people say.
Welp, for some of us, that "try" could mean not being able to walk for weeks. I know my body, and I know my limits, so I'll do a placeholder exercise during the ones I know my body can't handle.
Folks look at me and they see someone who "looks fine". But I've got a lot going on under the surface.
That makes every accomplishment on my fitness journey—no matter how minor to others—feel monumentous. I'm up against so much. But I'm still chasing my goals.
You're up against so much, too. I know it! And there aren't always ways around things. I know.
But when you can, don't give up on your dreams. You might have to fight harder than others. You might have to push through more than they know. But you deserve good things, too!
So don't give up. I believe in you.
