Learning What It Means to Self-Advocate When Doctors Won't Listen

I know my body. I know my body better than anyone else. It’s the body I have been living in for 22 years, and the body I will continue to live in for the rest of my life, whether I like it or not. I know what my body likes, what it doesn’t like and what really sets it off. I know my body. And I know when something is wrong with it.

I am currently a university student in my last semester, but I have unfortunately spent much of this semester in the health center. In my first three and a half years of college, I had been to the health center exactly one time (my body really did not like the anti-malaria pills I took when I went to India). This semester, my last semester, I have lost count of the number of times I have been and the number of doctors I have seen.

It began with a normal physical, when I started listing some troubling symptoms I had been experiencing. The doctor assured me nothing was majorly wrong, but still sent me to get blood work done just to check. So I went, no big deal. And within a couple of days, I got an email back saying my blood work came back and everything was fine – my thyroid hormone levels are normal, I am not anemic and I don’t have mono. Everything was fine.

Except it wasn’t.

 

Just a couple of days after that, I was getting ready to go to my friend’s apartment to do homework together. But when I bent down to pick up a book, my heart began racing and pounding. I once ran a half marathon, and the way my heart was beating after my race was not even close to what was happening to me this time. I had to lie down and text my friend that something was wrong, and she immediately came over. I tried to explain to her what was happening, but the shortness of breath I was also experiencing made it difficult to talk. I called my mom, who convinced me to wait before going to the ER; about half an hour later, my heart rate was back to (almost) normal, as though nothing had happened.

Still, the incident scared me so I went back to the health center the next day. The doctor walked in and, without looking at me, stared at a file and told me, “According to the blood work you had the other day, you have anemia.” Wait, what? Then why did they tell me I don’t just the other day? However, I shrugged it off and wrote down what she told me – take iron pills, eat foods rich in iron and come back in six weeks for a check-up, but I should start to feel better soon.

Except I didn’t. My symptoms got progressively worse. As someone who ran cross-country in high school, running 25-30 miles every single week, suddenly the simple task of walking to class wore me out so much that I required hours of rest. I began getting lightheaded more and more often, missing events and hanging out with my friends for fear of passing out.
I called the health center, and they refused to let me make another appointment. Instead, they suggested I see a specialist – but out of the three I called, none would allow me to come in without a diagnosis. I asked how I could get a diagnosis without seeing a doctor, but they replied it wasn’t their problem and hung up. After another incident of racing heart and nearly passing out, I went back to the health center and – three hours later – left with no new information. Nobody knew what was wrong with me.

So I figured that, if nobody at school could help me, I should make an appointment with my GP back at home. I made an appointment for the beginning of finals week, and was oddly both nervous and excited – maybe somebody could finally explain these worsening symptoms, maybe I would finally know what is wrong so I could start to treat it!

What I did not expect was for the nurses to call me a liar, or for my doctor to say I was either exaggerating or making up my symptoms. I begged her to listen to me – I don’t like feeling like this, I don’t like missing out on my last semester of college because of debilitating fatigue, I don’t like seeing more doctors than I can count over the course of a few months – but she refused. She ordered all of the blood tests she could think of and sent me away.

Here at school, I am listened to but nobody knows what is wrong. When I went home, I was called a liar and told my symptoms couldn’t possibly be real. But I know my body better than anyone, and I know something is wrong. Maybe it’s because I am young, or maybe it’s because I am a woman, or maybe it’s because I have mental illnesses in my medical file – I don’t know why doctors won’t listen to me, but I will not stop until they do. I will not give up, because something is wrong with my body and I want to know what. I want to be better.

If nothing else, I learned what it truly means to self-advocate. I learned the importance of keeping track of my symptoms, of making my voice heard, of forcing people to listen. I have a lot of advocacy experience, but I have never had to advocate for myself before. And it is hard; it’s harder than anything else I’ve done. Advocating for others, or for causes, is easy. You have a support system, you know what is wrong and you know what you want to fix. Advocating for yourself is different. People may not believe you, or they may not listen. But that doesn’t mean you are wrong, and it definitely doesn’t mean you are a liar. I know my body, and I will not stop fighting until somebody else tries to understand it too.

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Thinkstock photo via Ridofranz.