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The Parts of My Illness You'll Never See By Looking at Me

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My brother got married last weekend. I almost couldn’t make it, but I ultimately did. I danced with him at the reception while the best man had his wife. I almost didn’t get up, but I eventually did. The song was halfway through, but that was as long as I could last even with his support in lieu of my new cane. A short while later, my mom wanted to request a song for my husband and I to dance to. I faked a small laugh as I said, “I’m not getting up again; I just danced half a song, and now I hurt too much,” and another woman sitting next to me simply said, “Oh, hush! What’s the name of the song?” It was humiliating to hobble next to my husband as everyone stared at the only couple on the dance floor.

I don’t know what’s wrong with my body or why it is failing me. Doctors seem not to care, people in public seem to scoff, and my brain is on its way there with them all. Most days, I tell myself I’m just making up all these symptoms that don’t make any sense. Or if I’m not making them up, I’m really weak about how I handle them. Other people have visible indications of their illnesses or at least a name to tell people who question them. I have neither. My illness is invisible and unidentified, but that doesn’t mean I’m lying to myself about my symptoms. The lying I do is to others — to show them that I’m “fine” because I don’t want to be a bother.

They may rarely see my cane out in public, but they’ll never see it leaning next to my bed waiting to take me to the bathroom in the middle of the night. They’ll never see the shower chair that gets in my husband’s way every morning. They’ll never see him stand up to give me the more cushioned chair if I join him in the office or when he all but carries me down the hall when my legs lose their motivation to carry me themselves. They’ll never see the more than three days of work it takes to make sure my house is almost presentable before they come over, or my desperate rush out the door 45 minutes before my classes start in the hope that I have enough time to walk from the parking lot to the building without falling down. They’ll never see the faces I try not to make every time I have to stand up. They’ll never see all the breaks I have to take while I do homework because my hands hurt just taking notes or the pile of unfinished projects by my sewing machine.

Essentially, no one will ever see the pain in every muscle and joint, or the nausea that comes on randomly, or the dizziness that makes my rise from bed take whole minutes, or the muscle weakness that makes me collapse with no warning. They don’t see what is wrong inside me; all they see is what isn’t wrong on the outside, and that must mean I’m just like them.

There are so many details about a people’s bodies that no one else would know by looking at them. When I tell someone that I used to be able to write with either hand, I usually hear, “Oh, cool!” When my husband tells someone that he has a sunburn under his shirt, a hand is usually withdrawn. When my grandpa would tell people that he set off metal detectors with his new hips, people usually just laughed. People generally just accepted those statements as facts. So it should be when someone says she has chronic pain. She shouldn’t be doubted or accused of exaggerating or pressured into dancing one more song. She should simply be believed.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 6, 2016
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