I Have a Chronic Illness, but I Feel Too Healthy to Call Myself 'Sick'

I was diagnosed with ulcerative colitis, which is an inflammatory bowel and autoimmune disease, in August 2014, at the age of 17. I had been struggling with severe symptoms for over a year, but was too afraid to admit that I couldn’t fix this on my own. I experienced blood in my stool, inability to keep any food in my system, severe indigestion and, eventually, extreme weight loss. It was at this time that I finally told my family, and was sent for an emergency colonoscopy by my physician, which resulted in a diagnosis shortly after.

Since my diagnosis, I have been put on a few medications, which have all done a fairly decent job at maintaining my symptoms. I can go out with friends, eat (pretty much) whatever I want and overall live a pretty normal life. I have not needed any surgeries, have not had any significant weight fluctuations and, rarely, if ever, have to stay home or opt out of something due to my illness. I feel like a pretty normal, healthy person.

The chronically ill community is very tight-knit, and uses analogies like “spoons” and “spoonies” to bond themselves together and find unity and strength within each other’s struggles. However, even though I am chronically ill, I don’t feel like I belong in this community. I don’t have a certain number of “spoons” at my disposal each day, because I can usually function like a perfectly healthy person. I don’t have to decide between showering and making dinner, because I find myself healthy and strong enough to do both of those things almost all the time. This, along with never having had/needed surgery, or being able to get out of bed and hang out with my friends whenever I want, makes me feel like I don’t, or am in a way “not allowed,” to be a part of this “sick” community.

I recognize that I have relatively stable health, which is a privilege I have that a lot of other chronically ill folks do not. That being said, my health has definitely taken a hit since my diagnosis, and I can’t live exactly like “healthy” me used to. Because UC is an autoimmune disorder, I have a whole slew of other illnesses that have shown up over the last few years because of it (oral allergy syndrome and asthma, to name a couple). These come with their own array of symptoms, such as not being able to eat practically any raw produce, or not being able to walk up two flights of stairs without my puffer. Combine this with the consistent need to go to the bathroom every 10 minutes, not being able to eat popcorn and other irritating foods and pretty much constant bleeding from an unpleasant location, it occurs to me that I really am sick, and am not as healthy as I portray myself to be to others.

When I have a struggle with something and I tell people the variety of things that are “wrong” with me, their reaction is often “damn, you’re falling apart.” And in a way, they’re right. My body does not function like a healthy human’s body would, and it poses a lot of challenges on me daily, causing me to change my definitions of “normal” and “bad day.” Still, I don’t feel as though I have the right to be “sick.”

So where do I fall? The honest answer is this: I don’t know. I know I am not “healthy” and I know my body is testing my strength and my patience every single day, and yet I feel as though I am too “healthy” to be allowed to be called “sick.” This struggle to find my place is certainly something that troubles me, but I hope that voicing this struggle can help other individuals who might be in a similar, “middle-of-the-road” situation to be able to look for and find their place, too.

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Thinkstock photo via lolostock.