I am a senior in college. I work, and go to school full-time. I take part in many clubs on my campus, and manage to get grades that I am very proud of. I have good friends, and a great family.
Everything appears to be normal on the surface level of my life, which is why almost no one knows that I’ve been chronically ill for almost five years now. I can’t blame others for not knowing, or not understanding (though sometimes, it is extremely frustrating). When it comes down to it, I look, and act, like your average twenty-one year old.
I don’t look sick.
I have all my hair, I am at a healthy weight, and I’m able to move freely without any help.
My disability is invisible. It’s there, and I feel it, always, but no one else can see it.
I suffer from several autoimmune conditions. My body essentially mistakes healthy cells for bad ones, and because of this, my body attacks itself, causing chronic inflammation in different organs. I was diagnosed with Hypothyroidism, Ulcerative Colitis (a close relative to Crohn’s Disease), and Eosinophilic Esophagitis in December of 2011. I also suffer from Chronic Lymphadenitis.
You’re probably reading those names to yourself with a look of bewilderment, wondering not only what they are, but how on earth to pronounce them. I’m not going to go through the logistics of my illnesses with you because there is Google for that, and I’m tired of having to explain what they are. Instead, I will explain how they make me feel.
I am exhausted almost all the time. Some days are better than others, and my energy levels are close to that of what a normal person feels, but other days, getting out of bed is a real struggle for me. I feel very sluggish, and I nap. A lot.
My stomach is extremely sensitive. Everything I eat and drink has an effect on me, and if I’m not careful, there could be severe consequences that I will feel for days on end. I get nauseous randomly throughout the day, and if it doesn’t pass, I vomit. This is quite the norm for me, and I absolutely hate it.
Sometimes, my throat feels extremely tight where even water is a struggle to swallow. And my lymph nodes, because of all my other conditions, swell and regularly have growths that need to be surgically removed.
I’ve been on and off medication for years now. It definitely helps, as much as it can. Again, I have good days and bad days. It’s all chance, nothing is certain. I will never know how I am going to feel or how the day is going to be for me. All I can do is hope for the best and do what I can.
Sometimes, this means missing out on social events, or just hanging out with my friends. Other times, it means I need to call out of work or skip classes for the day. I hate that my body has that much control over what I can and can’t do, and if I could fix it, I would. It is one of the most frustrating things to lose authority over your own body. And it’s even more irritating when people don’t understand why I can’t make it to certain things, or think I’m skipping out on them because I don’t want to go.
I know I’m not the only person feeling this way or suffering from chronic conditions that others can’t see.
So this is just a reminder for the public from all of us: just because a disability is invisible, doesn’t mean that it isn’t there. It’s not all in our heads, we are actually sick, and it’s not always obvious from the surface level. We would appreciate your support, and more importantly your understanding not of what we’re going through, because you will never know, but instead of how our illnesses affect us.
And please, never again say, “but, you don’t look sick.” Not every disability is visible.