I was put on medication after medication, trying to find a combination that would work. But it was hard to tell sometimes what was an effect of the meds and what was the weather or the food I'd eaten or the random quirks of my body (and there were many quirks). My parents took time off work, rearranged their schedules so I wouldn't be home alone. They asked me to see a therapist and I acquiesced. I didn't think I needed therapy, but they were so worried and it didn't really bother me so I went. In retrospect, I definitely needed therapy.
Even when it wasn't clear that I would graduate from high school on time my parents were talking about college. My favorite doctor told me that a temperate climate would be best, so we looked across the country at schools in California. I wanted to go to college, mostly because I didn't want to get left behind. And I was already being left behind. I was lucky: my friends stuck around, didn't abandon me like many people's do when they get sick. But I still spent most of my days alone, going online and seeing all the fun that was being had without me.
My parents were overprotective. How could they not be, they were terrified. But I still felt trapped. I felt like a ghost, just floating along, not really doing or saying or thinking anything of substance. My brain was in a fog - a symptom of the illness - and the fatigue weighed heavily. It was all I could do to stay awake.
For three years in high school I lived like this - doctors appointments and aimless scrolling through the internet. Occasional physical therapy, occasional school. And over and over and over.
And yet, I was lucky. My parents, though they were scared, sent me to school 3,000 miles away. The climate and the short walks and the forced independence helped, and my stamina began to return. I built up my strength, nowhere near its former levels but enough to allow me to function as a full time student. I still battle brain fog and cancel plans due to fatigue and spend not insignificant amounts of time in pain, but I am ok.
When I think of all the reasons I am here, I think it is no accident that I come from an upper middle class white family. Actually, I know it is no accident. It's simple, really. My parents have health insurance. They had jobs that allowed them to take me to all of those appointments, and they possessed the cultural capital to stand up to the doctors and school administrators who told me to my face that I was lying. If they were working low wage jobs, if they didn't have a car (two cars, actually), if they didn't speak English, forget it. I would never have gotten a diagnosis, let alone graduated from high school or continued on to college. I would still be at home, lying on the couch, miserable from the pain, dizzy from the fatigue, wanting to melt away and have it all cease.
My parents, for the record, are superheroes. They moved mountains for me. There are privileged young folks with chronic illnesses whose parents accuse them of faking, who refuse to take their children to the doctor, and I was very lucky to get the parents I have. But I know there are parents out there who care just as much for their children, who want to fight for their children, for their health, for their happiness, for their right to an education, but who are limited in what they can do because they do not have the resources.
And the thing is, Dysautonomia, my chronic illness, is not rare. It really isn't. It's just rarely diagnosed. A number of doctors have told me that their patients are overwhelmingly upper middle class white girls. Some of them seem to think that this population is the only one affected by Dysautonomia. I don't have a medical degree, but I think that they're wrong.
It took me a year to get diagnosed, and I had nearly everything else going for me. And now, I'm ok. But there are people out there who are sick just like I am and they're living vastly different lives, and it has absolutely everything to do with privilege.
