when he looks at the ocean he sees a body
a place to swim
when he looks at me he sees a body
something to use
a means to an end
to recognise I too am an
Stop Villainizing Chronic Illness Patients for Enjoying Themselves
So there are always things that will happen, and I feel like invisible chronic illness is one of them. In fact, most of the time, you’ll never know someone has a chronic illness unless they tell you, or you catch them having a really bad day. For me, nobody at Hollins noticed until my first ER visit, because of a chronic migraine. 13 days of agony, where light, sounds, smells and people were causing sensory issues. I managed as a perfectly fine student, writing papers and doing math, even beginning my job as ASM for a show. And the only thing that gave away my problem was a stumble. My foot caught on a wire backstage, I almost fell forward, and that was when someone noticed. I was sent to the ER after people found out this was the thirteenth day, and I seriously needed help. But all it took, was the slightest misstep backstage. Without John seeing it, nobody might’ve known. By mid-October, half the theatre department and my hallway knew I had some form of chronic illness. Some knew it was migraines from a sign I posted on my door, others only knew that I was not capable of full conversations when I wore a certain color or carried a rattling bag of medication. Ibuprofen for fibromyalgia, when my muscles were too tense to manage sweeping, and Fioricet for migraines that made the world look glittery and spin like a carousel. When this continued, and I would feel extremely tired after doing nothing more than walk across campus from my dorm to the dining hall, I was told more sleep and less caffeine. Less stress, it would be bad for me. In late November, after wandering around with cloudy thoughts and chronic insomnia that no amount of medication could seem to help, I was told I had chronic fatigue. I would always be tired, have less energy, and be slightly less capable than other people. Don’t trust her in the theatre with heavy objects, but let her take lots of notes. She can handle math classes, but if she needs to do anything strenuous for a genetics lab, she needs to be monitored. When I got home for break, I was prescribed a medication to help with migraines and possibly give me more energy, along with an antidepressant. For a while all of those worked. I was beating my depression, definitely feeling better, happier. I had more energy, my migraines were gone, but with unexpected consequences. January, I started getting chronic nosebleeds. At first it was dismissed because of the cold air, and the skin would just crack and cause the problems. By early February, it was clear something else was the root, because along with drippy bloody noses, I had lost a considerable amount of weight. By March, I had begun passing out. Sometimes this would only happen after I had exhausted myself, or forgotten to eat for a several hours. Then it became unpredictable. Heat, cold, low blood pressure, high pulse, lots of stress, dehydration, were all things that could cause this, but it was never able to spot. Eventually someone learned my eyes would start jumping back and forth or my speech would stall, and there would be three seconds before I crumpled to the ground. Often this would only happen around two people, my friend or my advisor. But soon everyone who was in the theatre would know, look out for Murryn if she seems a little slower, if she seems to lose track of her words, if she looks exceptionally pale. I would pass out in the green room, the sidewalk, on the stairs and on stages. It took several ER trips, two cardiologist visits, and two EEGs before it was diagnosed- seizure like discharges that could leave me tired or cause my body to essentially reboot like a computer. I joined an outdoor theatre cast sometime in June, and in early July I had another fainting spell, this time from low blood pressure and excessive heat. Unlike the times in school, I was surrounded by people, and there was no more hiding it from anyone. Those who weren’t in the dressing room told the rest of the cast, and the crew. I was surrounded by worried voices and faces, people helping me sit up as I came around, and pressing water into my hands to force me to drink. But if you had asked any of them before this, they would say I looked perfectly healthy. Even now, in the middle of August, I’m not “normal” and I never will be. I have found ways to medicate and cope with things. More sleep and water to control migraines, a little more salt for low blood pressure, magnesium for fainting. Always keep a bottle of pain medication, water and a snack in a bag. Sit down when I get too hot, drink when I seem to lose focus. Eat every hour or two, just to maintain stabilization and a normal way of life. These are the main problems I have. Obviously, a normal life, social or otherwise, has been taken from me. I can’t plan going out with people, because there are days that I can barely get out of bed. There are days that I can’t handle drinking a healthy amount of water, which leads to migraines. Sometimes I can function with a migraine, as if nothing were there, and sometimes I would rather drive a railway spike through my skull. Of course, there are days where I ignore my illness and do something anyway, but it’s always paid back double. If there’s one thing chronic illness believes in, it’s karma. So we don’t push our limits. And of course, even if I’ve been in optimal health for ages, acting just like an ordinary person, there is that one voice. Sometimes it’s in my head, sometimes it’s on someone’s lips. “But you don’t look sick.” Sickness doesn’t have a look. Sickness just has hostages. If it’s nice, we get to have a glimpse of the outside world. Something beyond orange bottles and IV drips and cold pillows. Sometimes, we’re lucky and we get to have fun. And since it’s rare, it’s likely we’ll overdo ourselves because we don’t know when the next time is. Will it be a whole week of “normal” capabilities? Will this be the only time in three months? My joy comes in being able to be involved in a performance. I got incredibly lucky that my summer allowed me to take on the role of Charity with only one blip. But my jokes about being a “Charity event” were only that- jokes, because I didn’t want anyone to be worried. Last year, I was lucky that I had medication to take before I got to have one of the most unforgettable experiences of going to my first concert. This year, I’m gambling on my health letting me see Gerard Way, or Neil Gaiman, or making it on a miracle to see Cats during a school break. And every single time one of these things happens, the consequence is the same. “You’re not really sick. Are you faking?” No. The answer is, and will always be, no. Chronic illness patients function like regular people, because we’re mocked if we don’t. And when we do something regular people do, have fun and enjoy ourselves, it’s all a reason to say we’re faking. We don’t get joy often, and there isn’t a Make A Wish for those of us with illnesses no one else can see. Let us enjoy ourselves, and accept that sometimes, our days are good. Invisible illnesses are just that. They will never be seen by others, only felt by ourselves. Don’t demonize the people who decide to make the best of our off days. Let us have fun, because so often, we can’t. Just because our illnesses are invisible, doesn’t mean we, or our basic needs of happiness, are.