When My Chronic Disorder Went From Being an Invisible Illness to a Visible One

When it comes to invisible illness, I had one for 30+ years of my life. I loved and embraced invisibility. I felt normal, and keeping my condition secret meant that I was treated as such.

In my early 30s, though, some things happened to make it visible. Due to cystinosis-related muscle wasting, I started to lose strength in my voice and enunciation in my words. So while you might not have guessed that I had a health problem if you saw me on the subway, you’d definitely realize it once you struck up a conversation.

The other area primarily affected by muscle wasting is my hands. My thenar eminence has lost all muscle, and while I still have grip strength (that comes from the forearms, mostly), activities that require a pinching motion have become near impossible. I took up rock climbing to build muscles to compensate.

At first I was hesitant, but I grew more OK with having a visible illness. It presented me with opportunities to share my story, which is one I tell pretty openly these days. And there’s healing in that.

But I then heard the perspective of a parent whose child has cystinosis. This parent had seen the hands of adults with the disease and was upset by it. It was very literally vocalized, “I don’t want my child to turn out like that.” And it got me thinking.

Maybe there are more important qualities than the status of our hands.

Maybe when we judge quality of life by appearances, we’re being ridiculous.

We think of all the things others surely can’t do because their disease appears to have robbed them of those abilities. And that’s weird to me, because I’ve gained more than I’ve lost. 

Maybe the folks we limit still feel limitless in the areas that matter.

Maybe some of my biggest role models in the rare disease community hold that status because of their kindness. Their work ethic. Their helpful attitude. Their wisdom. Their contentment.

While I don’t wish health problems on anyone, maybe it would be okay to “turn out like that.”