Those of us with invisible chronic conditions often hear that we don’t look sick and within our circle, we have a lot of conversation about how this makes us feel. Many talk about how it makes them feel discounted, like what they are experiencing isn’t real or doesn’t matter, simply because it can’t be seen. Plus, we’ve all gotten very good at hiding the subtle side of being persistently sick.
I used to get annoyed when people would tell me that I don’t look sick. I understand the demoralizing feeling that comes with not feeling validated for your experience simply because someone does not understand it. I think this feeling is the strongest when you are newly diagnosed with a chronic disease/disability. Your world is turning upside down and it is a very scary time so validation is very important and, to not get it because you look better than you feel…hurts.
Now that I’ve been diagnosed for several years, I have a few new thoughts to add to the “You don’t look sick” conversation. I no longer get mad. I know how I was before I become chronically ill and while I never meant any malicious intent, I am sure that I said and did ignorant things to people who were in the boat I am in now, without ever realizing what I was doing. So, I cut people who don’t get it a lot more slack. Plus, I just don’t care anymore. I don’t care what other people think about the way I look. I know the truth and that is all that really matters. I also know that just because I suffer constant pain, I have every right to look as good as I want to look!
Recently though, I’ve had a newer thought on the subject. Not that long ago, I saw a person in a wheelchair outside of a store, probably waiting to be picked up. The person that I saw was clearly disabled, cerebral palsy maybe, I don’t know for sure but, whatever this person was living with was not invisible. As I looked at this person, a thought struck me like a thunder bolt and it’s one I never had before. I became grateful that my disease is invisible. I’m not being remotely critical of anyone with a visible disability here. It’s not this person’s fault their disability is visible any more than it is mine isn’t but, I realized that when your disease is invisible, at least you have some control over it. You have control over it in a way you simply don’t when it’s just out there for all to see.
I have a choice to let people know I am chronically ill/disabled or to blend in. I don’t ever have to explain myself to anyone or to receive pitiful looks from people who might wrongly believe my life is harder than theirs just because I can’t do everything I want to do. There is something to be said for being able to blend in when you want to. There are times that blending into every day society is just easier. It gives me an escape from my own reality that the visually disabled never get. I can forget. They can’t. They are reminded of their physical challenges constantly. I am not. I mean I am, because of how I feel but not because of how other people react to me. That’s what I mean when I say, at least I have some control. I can avoid other people’s pitiful pity whenever I want to. I’m actually grateful for that and I’d never thought about the fact that there are actually some advantages to having an invisible illness. This is one of them.
Because my disease/disability is not obvious, I have the advantage of living in two worlds. People don’t stare at me. I don’t feel their glare as I do my grocery shopping or try to enjoy an evening out with friends. I don’t usually have people automatically assume things about me unless I tell them I have an invisible chronic disease. It’s only then that I am sometimes forced to deal with their ignorance but for the visually chronically ill/disabled, dealing with ignorance is a constant. One may not better than the other, invisible versus visible, they are just different. Being chronically ill/disabled is hard but the realization for me that having in invisible illness actually gives me some control, is a new and empowering thought!