Please Don't Say I Don't 'Look Sick' After I Explain My Illness to You

“You don’t look sick.”

I suppose it’s meant to be a compliment, but it doesn’t usually feel that way to me. After I build up the courage to speak openly about my chronic illness, all the ways in which it affects my body and debilitates me, it feels more like a question. My response is usually a closed-mouth smile and a shoulder shrug while I look away. My perception is this: after hearing the laundry list of symptoms, the person pauses, looks at me and instantly invalidates everything I’ve just said with their own determination that, to them, I do not look sick. This is perhaps one of the hardest parts about having a chronic illness, especially one that is not physically apparent or familiar to most people. It is something I hear so many people with these “invisible” illnesses struggle with. The people we encounter in our daily lives, and even sometimes the ones closest to us, can’t understand the pain we are dealing with. Because it is invisible, and especially because it doesn’t look like the “sick” they’re used to, it isn’t “real.” But let me assure you, it is very real.

It’s easy to understand why so many people would be hard-pressed to believe I have a chronic illness. I tend to downplay my condition. In part, it’s to protect them, but it’s mostly to protect myself. Talking about my “sob story” isn’t the most favorable conversation and it usually starts to make people uncomfortable when it turns serious. When people ask me how I’m doing, I’m sometimes tempted to say, “Well, I woke up extremely fatigued today and I’m having a lot of joint pain and my doctor won’t refill my medication because I’m late on my blood work. But I couldn’t get a lab appointment, so I’ll have to wait an hour just to get a blood draw, hopefully they can get me on the first stick. I’m also feeling a little nauseous. Not really sure why, probably from one of the 10 medications I took this morning. But I guess I’m fine, how are you?”

That would certainly get them off the elevator in a hurry. So yes, I choose to keep all that inside, smile brightly and say, “Fine, thank you.” And if I’m being honest, talking about it out loud tends to make it more real. Not to say I’m in denial, but I do think about my disease enough as it is, without having to try.

The thing about a chronic illness is, I find you are constantly experiencing grief, but it is unlike the normal grieving process. You go through the grief cycle over and over again. Every time you realize there is something you will never get to experience or won’t be able to do anymore. Every time a new symptom appears, the cycle begins again. If you follow the grief model, the final step is acceptance. Acceptance is tricky because it can sometimes feel like giving up. Accepting there are just some things that will never be a reality for me. Life is going to be a constant struggle and I’m not going to “get a break” from this illness. I will have to continue to adjust to a constantly changing new “normal.” The balance between acceptance and giving up can sometimes feel like balancing on a wire. Do I need to cancel today to give my body the chance to rest and heal? Or am I giving up, giving in, when I should be pushing myself harder?

Some days, I don’t feel all that bad. Usually, there are small periods of time of not feeling “that bad.” I use quotes because it’s not bad for me, but not good enough to freely and fully enjoy my life the way I used to. That kind of relentless pain and discomfort eats away at your spirit one piece at a time, as much as the disease does your physical body. Which may explain how a simple statement from a stranger can be such a strong trigger. I guess all we can do is take a moment to appreciate those days when we do feel like ourselves, if only for a moment. And be thankful those good days can feel so much sweeter in comparison to what we typically endure. I should be grateful that for now, on many days, I don’t look sick. And next time someone says that to me, I’ll try not to take it personally. And maybe, just maybe, even take it as a compliment.