“But you don’t LOOK sick.” I can only imagine how frustrating hearing this must be for people living with an autoimmune disease. Just because the pain isn’t visible doesn’t mean it’s not there. But I realized that I’m one of those people who forgets this.
My dad was diagnosed with multiple sclerosis six years ago. When he was diagnosed, he had problems with his speech and coordination, as well as numbness. Then he started treatment and went into remission. He stopped showing symptoms typical of MS, but his medicine gave him flu-like symptoms. I noticed that he felt sick and tired for about six months. I’d hear my mom reminding him about the injections he had to give himself, and when he had to inject himself in a spot he couldn’t reach he’d ask one of us to do it for him. I always refused because needles scare me, but it was probably mostly because it made me uncomfortable. I noticed him trying to make healthier lifestyle and diet choices, and we all tried to educate ourselves on this disease that was very new to us. People were always asking how he was feeling. Sometimes he wouldn’t want to do things because he didn’t feel well. Because of all this, I was very aware of his disease for the first year after the diagnosis.
Then I became a lot less aware. The medicine stopped giving him flu-like symptoms, at least from what I could see. I stopped asking about it once he told me he was feeling better. Injections became a normal part of his routine, so I stopped seeing and hearing about them. Luckily he hasn’t had any relapses. Occasionally things come up that remind me of his illness but for the most part I forget it’s there. Because “he doesn’t look sick”.
I tell myself he probably wants me to forget, that he wants everything to be as normal as possible. So I don’t ask him how he’s feeling, even though I should. I’ve never asked if he’d like to talk about it more than we do. If I’m honest with myself, the real reason I don’t ask is because it makes me uncomfortable. I pretend it’s not there because I wish it wasn’t. That’s what I do: I avoid things I don’t like, things that make me uncomfortable and scare me. As long as he’s not showing symptoms, I’ll pretend he’s perfectly healthy for as long as possible. I hate the idea of my dad being sick. And while he’s able to lead a normal life at the moment, I’m terrified of the unpredictability of this disease.
Amanda Ippolito-Autoimmune Ally
Amanda is a junior at The College of New Jersey, pursuing a degree in journalism. She is from northern New Jersey but in the summer, she prefers to spend her time at the Jersey Shore. In her free time she likes to read, write, nap, do yoga, and hang out with friends. And her cat, Uno. She also plays way too many games on her iPhone. Amanda has been inspired to make a difference in the autoimmune community ever since her dad was diagnosed with Multiple Sclerosis five years ago.View all Amanda Ippolito posts.