{NHBPM Day 1} Why I Write About My Health

This post is the first in a series of 30 for the month of November. National Health Blog Post Month is a WEGO Health alternative to NaNoBloPoMo, the blogging equivalent to NaNoWriMo, which I’ve done for the past three years. This year I decided to try something different, and will be taking my inspiration for the next 30 posts in this series from a list of topics to inspire health bloggers. I hope you’ll follow along as I try my very best to write a post each day, flare or no flare!

I go to Harvard.

I don’t talk about that much here, nor on Twitter, really (I leave the “Harvard 2014” in my twitter info for classmates to find me if they’re intrepid enough to figure out who I am without my last name) because the stigma of attending Harvard University comes with more stigma, it seems, than that of having a chronic illness.

I’m not rich (I’m on full aid), nor am I a “legacy” student (the term for a student who has a close relative who attended an Ivy league institution; I’m the first in my family to go to a four-year school). I’m also not a genius–I got here by working hard in high school, to the dismay of my friends and the demise of my social life. I love to learn, and I love to learn from my peers, and little by little I have carved out a place for myself in this cutthroat, constantly-stressful bubble that is Harvard. That place involves lots of soothing tea, delightful conversations over relaxed meals with friends, and many, many hugs. I don’t buy in to the culture of “must. become. a. consultant” or “must. become. rich” that so often pervades this atmosphere, and grades are sort of a non-issue for me (I’ve realized that it’s impossible to put a letter-grade on a person’s worth, but I still have moments of occasional “Ohmygosh I’m never going to succeed in life if I get a B on this paper!” which are so awful I try to avoid those moments at all costs).

I go to Harvard and I have bigger things to worry about than grades or future wealth. I am chronically ill.

Dealing with my EDS has become such a part-time job that I am going to have to quit my actual job come January (more on that at a later time). Between endless doctor’s appointments, medication schedules, and the inevitable (but never quite predictable) flares, I have barely enough the time or energy to go to lecture, let alone complete homework assignments or sit for examinations. I’m figuring out how to be a Harvard student with a chronic illness, and it’s a lot harder than I thought it would be.

It hasn’t always been this way; in fact, my freshman year I was able to be as social as I wanted to be, and I succumbed to the rat race of homeworking until the wee hours of the morning so I could get everything as perfect as I thought the next person’s assignment would be. I was, in effect, the “average” Harvard student (though there really is no “average” among us), or at least the stereotypical one. I participated in as many as five extracurriculars at a time, but didn’t feel particularly passionate about any of them. I slept very little and ate too much, but I was content in the knowledge that all of my peers were doing the same thing. I was fitting in.

The end of freshman year sent my EDS on a nosedive flare that I’m not quite sure I’ve even recovered from. I was discouraged by the “suck it up” attitude of my primary care doctor and continued to push myself through a summer in Italy (where I went through 1000 capsules of Ibuprofen in 8 weeks) and another semester taking five classes. Last semester, my sophomore spring, I dislocated my ankle but was too busy, too overcommitted, too distracted to do anything about it that I wound up walking on it dislocated for two whole weeks, and it still hasn’t healed.

When I finally had the chance to sit down with my physical therapist to assess the extent of the damage, the look in her face told me everything I needed to know: it was time to slow down and give my EDS the care and management I deserved. I had been neglecting treatment and pain management because of many factors, but I had let it go too far. The ligaments in my ankle had stretched to the point of no return, and my ankle will not stay in place now without the help of a very complicated and very uncomfortable brace. I did that to myself because of my insistence on keeping up with my peers when it was all too clear that I wasn’t going to be able to keep up.

I write about my health to remind myself that it’s not my fault that I can’t keep up, and that I don’t have to. I write because I know there are other college students out there who are trying to deal with things that are beyond their control, and maybe some of my words will reach them when they need help. I write because in dealing with my denial about the role EDS plays in my life, I have turned to other health blogs for guidance and support, and I want to give back. I write because I’m still dealing with that denial, and the online community of health and illness bloggers is more supportive and understanding than anyone in my life will ever be. I write because I don’t know what tomorrow will bring for my body and that scares me; the only way I know how to get out of bed and continue my life despite my fear is to write about it. I write because the past few months have brought on a flood of flares that leave me in crippling pain and wondering how much longer I have to use my arms or even walk, and I can’t ignore them any longer.

I write to heal my heart, as my body falls apart.

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