You can’t see my illness

When you spend a large portion of your time sitting in the bathroom waiting for the pain and overwhelming nausea to subside you have lots of time: time to wish the pain away, time to count the tiles, but mostly time to think. Recently, I wondered what it would be like if healthy people could catch a glimpse into life with an invisible illness.

In October of my 6th grade year I woke up with a stomach pain that never went away. My mom took me to multiple doctors and each one said the same thing, I was overreacting. Hearing professionals tell me that repetitively was extremely difficult. As I grew up, I learned how to manage my illness, and years later I finally found a doctor who took me seriously and gave me an answer. It wasn’t all in my head; my illness just wasn’t convincing enough for the other doctors.

For people who live with an invisible illness, this is the reality they live with. Living with an invisible illness doesn’t seem much different from anyone else’s life when examined from a healthy person’s perspective. No, my hair doesn’t fall out, although I have wanted to pull it out in times of pain. I’m very lucky to be able to walk without aid, and I don’t need an oxygen tank. However, that doesn’t mean that I’m not sick. For many people with invisible illnesses, our ability to look normal is a blessing and a curse.

Living life with an invisible illness can be difficult to talk about. When people discover that you suffer from something they haven’t heard of or can’t see, the phrase that normally follows is, “But you don’t look sick.” While the confusion is understandable, having someone not believe you because they can’t see the illness physically isn’t helpful. The pain that people with invisible illnesses deal with each day is very real. Every day isn’t good or bad, but bearable and unbearable.

Yes, there are days when the pain is tolerable and we look normal, but even on a bearable day there are still things we can’t do.

I have to manage my stress, energy and diet. This means that I have to micromanage my schedule because I can’t pull all-nighters working on homework or run to McDonald’s for a late night snack. Even if I follow the rules that I’ve set, there’s no guarantee that tomorrow will be a bearable day. You see, life with an invisible illness means that no matter what you do there will be days when the pain is too muchdays spent missing class because you’re curled up in a ball in bed wishing that the pain would ease up. While the idea of missing class sounds fabulous, those days are anything but.

Having an unbearable day means falling behind in class discussions and missing valuable information. We want to be there. We want to participate and learn.

Also, when we cancel plans that were made weeks ago, it isn’t because we don’t want to be there, in fact we probably want to be there worse than anything.

Trust us, we would rather be midnight bowling with our friends than staring at the ceiling. Sometimes we just can’t be there.

It isn’t easy and many of us don’t expect a gold start or a kiss on the head. Simply being understanding of the difficulties that we face is more than enough.