Okay y’all, I get it. My blog is titled “A Southern Celiac.” Being a Celiac kind of seems like a defining characteristic for me, right?
It is. I have to check everything that I eat for gluten and cross-contamination, and I have to supplement my diet since gluten-free foods often aren’t fortified. I worry about my b12, my iron, and I get my blood checked regularly to make sure everything is normal and under control.
One thing that I find surprising is how many people assume I’m healthy. You know, other than the celiac. “Oh, I could never (insert something I’ve done) here. I have COMPLICATED health issues.”
Celiac is pretty easy to keep under control compared to a lot of autoimmune diseases. I get that. Unfortunately, it’s pretty common to get other autoimmune issues once you have one. I have two “extras”– psoriasis and myasthenia gravis.
Other than that, I have a genetic collagen disorder called classical Ehlers Danlos Syndrome. It affects all of my collagen and causes anything from my skin tearing open randomly (yikes) to joint dislocations (also yikes.) This disorder causes some other issues, like dysautonomia, a dysfunction of the autonomic nervous system that means I have to eat lots of salt and I pass out a lot.
Like many other chronically ill people, I look fine on the outside. I even do fun things sometimes! I mean, I’ve got a 30 by 30 list. I must be doing pretty good!
What you don’t see is the constant, chronic headaches. You don’t see me waking up in the morning with a dislocated shoulder because even sleeping can knock something out of place. You don’t see me resting when I’d rather be playing with my kid and our friends’ children. You don’t see the hours I spent in the bathroom if gluten passes my lips or if I get a little too free with the dairy products. (Lactose intolerance is pretty common in celiacs.)
Listen, we all hate it when healthy people assume we’re like them. We hate the “I get tired too” comments. But have you ever caught yourself doing this with another chronically ill person? Have you ever looked at someone and thought “they must not be as sick as me?”
I put my best face on for social media. You see my fun days, my yes moments. You don’t see my no moments and my “sorry, I have to cancel.”
I won’t say that illness is a spectrum, because I don’t think that’s the best way to describe it. I think Illness is something else entirely. The illness I consider the worst may be a minor nuisance for someone else. My pain levels may be different than someone else’s. I may be doing great for a few weeks, then have a relapse that lasts for months. Let’s not play the illness olympics. We’re all suffering here.
Let’s all try harder to look deeper. Let’s try not to compare. I know it’s hard. I do it too. It’s probably human nature. But the next time you want to judge someone by their appearances– and by their Facebook– consider why you wouldn’t want someone to do the same to you.