Living With A Disease With No Name

I remember being at my neighbor’s house when I was 12 or 13. We were talking, laughing at the table with her mom. I told her I couldn’t touch my pinkie to my thumb and showed her. She stopped laughing. She must have said something to my mom when she came to pick me up that night. After that, I started leaving school every week to see a new doctor. There were so many white coats, and plain-faced with concerned eyes, gently knocking on the door to see if I was ready, mostly men. Cold hands, sweaty hands, but some were soft. I added them up and realized I had seen 25 doctors. Nobody knew what was wrong with me. I had so much of my blood drawn, electricity shot through me casts for my hands that I was meant to sleep in, claustrophobic MRIs. Nobody knew what was going on and I was embarrassed and traumatized.

My body was closing in on itself. Not quite enough for me to feel trapped inside, but enough to list off the things I couldn’t do anymore. No cartwheels, pushups, kneeling, raising my hands to the sky, no fists. Oh, and the pain would come from sitting still, staying in place. It would also come from moving too much. Finding the snug space in between was a trial and error process.

‘Arthritis, arthritis, juvenile arthritis’, some of the doctors would say. But they were wrong. It didn’t match up, but it was the closest anyone had gotten. So, I just started telling people who would ask that I had arthritis, even though I didn’t. I felt shame every time it would leave my mouth. That’s an old person’s disease. It’s not attractive. Even the word itself sounds like brittle bones.

I had a disease with no name. A disease that kept me invisibly disabled. The few friends I would tell, would ask ‘have you tried yoga, have you tried CBD, are you sure you don’t want to try yoga?’

I would pray to the universe to fix me. I had a mantra that I would repeat in my head nonstop. For years and years, it became muscle memory in my mind. When I was 18, I tattooed something beautiful on my arm to try to take away some pain. I put it there when my body turned on me and started moving in ways that I did not approve. I chose to put something beautiful on my arm. I didn’t look away as the needles shot purple and green into my skin.

I was so sick of contorting my body to hide what I did not find beautiful. I had gotten so good at it. At the beach, naked in bed, I would make sure I was positioned just so. Panicking when I wasn’t covered up in the right way. It is painful even now to write about. When you’re living with a disease with no name, there’s no blanket term to comfort onlookers, strangers, and friends. No one word to provide any peace of mind or allow for that ‘oh, I get it now’ face.

Winter was my favorite because I could hide away in sweaters, coats and scarves. When fall approached, I would always sigh the biggest sigh of relief. ‘I made it through another summer.’ I would get anxious, sick to my stomach in the spring when each week grew warmer and more and more friends wore tee shirts at the park. Too many times I sat sweltering in the sun in a long sleeve shirt, telling my friends ‘I’m always cold, no really, I’m always cold.’ I never wanted to feel uncomfortable and miserable like that. I didn’t want to punish my body anymore.

There was a time when I was bulimic and would refuse to keep anything down. After every meal I would smile and leave for the bathroom. A few times I caught the eye of a friend or a boyfriend, but then they would look down. I wasn’t sure if they knew what I had gotten myself into. Another part of my brain awoke during that time of my life. It was fueled by excess, pleasure, addiction. It shook everything I knew to be true about myself. It left me in a haze, dependent, hiding something huge that drove every action. I wanted some sort of revenge, or to get even with my body. I wanted to feel smaller, to distract from what I hated about myself so much. And then I started to scare myself. This was a new disease and I was in so deep. I kept trying to stop. ‘Don’t go to the bathroom after this meal’ I would tell myself. I would write messages to myself on my phone. ‘Stop, you’re hurting yourself’.

In the end, it was fear that saved me. I stopped hurting myself in that way. Not all at once. I would relapse and hate myself for days. It didn’t get easier, replacing one disease for another. One set of problems for another. But it made me realize that the mind and body are a lot more connected than we think they are. I didn’t need to be fixed by some greater. I needed to fix my mind and body connection that had been severed long ago. Like a sparking telephone wire, snapped in half during a storm.

Retraining your mind to stop focusing on what you lack and start feeling gratitude for all the good is the first step in breaking this dangerous cycle. When you come from a place of lack, that is all you will receive. When you are in the mindset of abundance and gratitude, good things will continue to come to you. The connection between the mind and body is something that is not always openly discussed. It is difficult to harness, especially when the body is not as durable as you may have hoped, but for me, it was the key to self-acceptance.

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