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“But You Don’t Look Sick …” MAG
I hear the phrase “But you don’t look sick” at least once a day. It comes from teachers, fellow students, even friends. Most of the times it’s uttered in disbelief: “How can this teenage girl who was perfectly fine a few months ago be spending so much time in the hospital?” Most people try to pass it off as a compliment of the “you look so good for a sick person” kind. I normally answer with a sarcastic remark about how I wear a lot of concealer. I really shouldn’t, but I don’t know how to tell them that even though I look fine, my body really doesn’t work. On the outside, I look like every other 15-year-old girl, but inside I’m about 70 years older.
I was a remarkably healthy child. So when, in the summer of 2014, I fell seriously ill, it was a shock. It started with dizziness, then migraines. I went to the doctor, who sent me to a neurologist, who sent me for an MRI. Normal. The migraines persisted. I went back to the doctor, who sent me to a different neurologist, who sent me for a CT Scan. Normal.
I waited some more. My health got worse. I was tired all the time, and my body hurt all over. I could feel my muscles getting weaker. When I had to drop out of dance, I cried for a week straight. I went back to the doctor, who told me I had the flu and put me on antibiotics.
Needless to say, I didn’t have the flu, and I kept getting worse. One night, in the middle of dinner, I passed out. I was admitted to the hospital and was diagnosed with postural orthostatic tachycardia syndrome, or POTS. POTS is a form of dysautonomia, an umbrella term used to describe a number of conditions that cause the autonomic nervous system (ANS) to malfunction. The ANS controls all the bodily functions that are done without consciously thinking about them, such as heart rate, blood pressure, digestion, kidney function, and body temperature. With POTS, my heart occasionally forgets how to be a heart. I was put on a medicine for that and wore a monitor for a while, but after a month I saw very little improvement with my heart, and the rest of me kept getting worse.
Less than two months later, my mother took me back to the emergency room because I was in so much pain we didn’t know what else to do. I ended up spending four days in a little white room on the third floor of the children’s hospital. It was there that I was diagnosed with two more chronic illnesses, fibromyalgia and myalgic encephalomyelitis (ME).
Fibromyalgia is not uncommon; over 3 million people in the United States and Europe deal with it. However, 99 percent of them are over 45, and only 0.5 percent of patients are under 18. ME is also occasionally called chronic fatigue syndrome. This doesn’t just mean that I’m tired all the time; it also involves sleep problems, abdominal and digestive issues, tremors, sinus problems, and severe muscle pain.
But even with all these diagnoses, I wasn’t getting better. So we went back to the doctor, and it was discovered that at some point in my life I had been bitten by a tick that carried Lyme disease. However, it had gone undiagnosed for so long that it turned into chronic Lyme disease. This controversial diagnosis is actually a good thing. Now that we know what is wrong with me, we can manage it with medicine and other treatments.
Now three months since I was diagnosed, I’m still no better. I probably won’t start seeing any improvement for at least another few months. I still spend far more time in the hospital than I would like to. In fact, I’m writing this from my hospital bed. Using medicine, intense physical therapy, and some non-traditional methods like acupuncture and chiropractic, I will hopefully get back to normal. Unfortunately, the reality of my condition is that even with all this treatment, there’s a chance that I will continue to get worse. There is a 25 percent chance that I will be wheelchair-bound by the age of 21.
Recently, my school’s marching band took a trip to Disney World to lead the Main Street parade. The night after we marched, I collapsed on the bus returning to the hotel. My legs gave out completely, and I couldn’t feel them at all. I had to use a wheelchair for the rest of the trip. It wasn’t too bad though; I got to go to the front of the line for all the rides. When I got home, I went to my second home – the hospital. I was switched from oral medicines to IV ones. In a week, I will have a PICC line (a long-term intravenous catheter) inserted to administer my medications more easily. I also have to walk with a cane, which results in a lot of stares when I go out, but I get it; I look like a grandmother.
People ask me about my health a lot. Chronic illness isn’t common at my age, and lots of kids, especially at school, want to know what it’s like. Yes, it’s hard. No, I can’t just get better. No, I can’t die from this. Yeah, at least it’s not a brain tumor. I say at least one of those things every day.
I have a lot of people tell me they feel bad for me. I’m forever grateful for the support I’ve received, but I never really know how to respond. To be honest, even though I put on a fake smile and try to breathe through it, this situation pretty much sucks. I had to give up dance, and I can’t go to parties or even hang out with my friends very much. I’m now gluten-free, which is torture considering I used to bake all the time. Gluten-free cake is not real cake.
I’ve gone through hell and back, but the experience has made me a stronger person. I’ve met so many friends from support groups who know what I’m going through because they are too. My illness has shaped me, but it doesn’t define me. That’s why I don’t often talk about it; I don’t want to be known as the sick girl. I want to be known how I was always known, as the girl who’s read Harry Potter more than a hundred times. My condition isn’t what I am; it’s just what I have, and I’m stronger than it.