Invisible illness week came to a close last night and I wanted to share my final thoughts: All last week I saw a lot of bloggers and others talking about whether they wish they had an invisible illness or a visible one, and I suppose there are advantages and disadvantages to both. People have been saying things like, “I really wish my illness was visible because then people would really know what I go through!” But do you really want something visible like scabies, shingles, psoriasis, elephantiasis, or herpes of the eye? No. You don’t. Well, I hope not anyway. Do you want to be in a wheelchair missing both of your legs just so people can SEE that you are suffering? Probably not.
But I get why people sometimes wish their illness was visible. You want validation. When you say you are in pain or suffering you want people to believe you without them looking at you and quickly seeing that you look fine and therefore coming to the conclusion that you must be faking or over-exaggerating. It’s not wrong to wish that you looked sick so that people would take you seriously. The thoughts have definitely crossed my mind. As soon as I gain weight, the side-effects of medication subside, and I am not in the hospital or in a major flare-up, people think I must be better. I assume it’s because they’ve never lived with a life-long illness themselves and can’t grasp the term chronic. I can’t tell you how many times I go back to work after being in the hospital or getting really sick and I hear “You look great, so glad you are feeling better!” or people ask me about a new medication I am on and they assume that it’s a fix-all for my disease. Because when I look better they assume I am better and sometimes I get angry and frustrated. It’s difficult when the outside doesn’t match what is going on on the inside. But then I ask myself, why do I care? What does it matter if people don’t understand that I can look okay on the outside (I mean c’mon! I’m pretty fine if I do say so myself. Kidding! Just kidding..) but I’m still walking around missing my entire large intestine and rectum and surviving! I still take these crazy medications to get by. I still have a disease that causes ulcers, inflammation, pain, strictures, fistulas, blockages, and all sorts of horrible things. And the only conclusion I can come to is that I want validation. I want people to know exactly what Crohn’s disease and ulcerative colitis can do to you because I am annoyed that no one understands. But then the other half of me knows that it shouldn’t matter and that most people are never going to get it, and that’s okay. It’s not important to them. Not even trying to sound mean there, but it’s just not as important to them as it is to me because it doesn’t affect them. And until it affects them or one of their family members it will probably never be anything they understand, and that’s okay.
Do I really want a visible illness? Nope. Perhaps it’s a blessing to have an invisible illness. No one needs to know you have an ostomy unless you lift up your shirt and show them. No one needs to know you’ve had tubes placed to drain a fistula or abscess or that you are bleeding internally because they can’t see those things. Though there have been times I have been visibly sick from this disease, most of the time no one would know. I’m glad that for the most part my disease is invisible. I’ve made it visible in my own life through this blog and the work that I do. It’s a personal decision to let people in, and I’ve chosen to make it visible in the healthiest way I know possible and that is to write my story, to proudly show my surgery scars, to wear my “Ask Me” shirt, and to record videos. This past week is about that. It’s about bringing invisible illnesses to light so that there is more understanding in the world.