GUEST BLOGGER: When Your Illness is Embarrassing Who Really Wants to Hear About It?

There is an invisible illness that I have never heard anyone else admit to having. And quite honestly, I don’t run around and tell people that I have it because when they hear the name “hydradenitis suppurativa”, their first reaction is puzzlement. But ultimately the question comes up. “What is THAT? I’ve never heard of it.” By then, I know that I’m going to gross them out, but I begin to explain the illness and by the time I’m done, my listeners are ready to head to the hills and get as far away from me as possible. After all, it could be catching.Yes, it’s a chronic illness and it’s also known as Acne Inversa. But it’s not like the acne on your face. It hides beneath your arms, under your breasts and even in your groin. Anywhere that skin meets skin, it is likely to pop up. It’s not just a little pimple like you get on your face. It is huge boil-like sores, sometimes as many as six or seven (or more), some the size of apricots, and in some cases they bleed or get infected. Sometimes they don’t heal for years at a time. They form a sinus track under your skin and over time they get worse. They also smell, which is one reason no one admits that they have it.

There is no cure and the disease is staged from a one to a three. It’s a chronic and invisible illness that is very demoralizing and many folks with the disease become depressed. Surgery is one option but it’s not a cure. The disease can come back somewhere else. There are no drugs to treat it, at least not successfully according to those who suffer from it. It is helpful for sufferers to avoid any processed foods, anything with additives and preservatives, and anything in a bag, bottle, or box. Like that’s so easy!

You can only hope that you never get this disease. But if you know someone who has it, remember that they do feel like a modern leper and they are hard-pressed to admit that they have it. It is best not to talk about it because it’s really quite disgusting and there’s no hope that it will ever go away. Having a sense of humor is helpful. Joining a support group can be beneficial. A supportive and concerned mate is nice. And most of all, remembering that you keep it an invisible illness makes it almost tolerable.

National Invisible Chronic Illness Awareness Week is so important that people are admitting that they have an invisible chronic illness just so they can help someone else.