How I Learned That Living With a Disease is Normal

When I started to hit puberty, I immediately knew that something was wrong. My periods seemed to be hurting me more than my friends’ were, I was the single moodiest person that I knew, and my acne and unwanted facial hair had earned me the nickname “Dan the Man” among the jerks I went to middle school with (in their defense, I DID have a pretty solid unibrow, but it’s still no excuse.) I knew puberty was supposed to be rough, but COME ON! My mom eventually took me to the doctor where I was diagnosed with something called Polycystic Ovarian Syndrome (or PCOS as it’s sometimes referred.)

PCOS is a hormone disorder caused by cysts that develop on your ovaries. Those cysts make periods a gazillion times more uncomfortable, they make them irregular (I remember once going 4 months without getting a period), they mess with your blood-sugar levels, they give you unwanted weight gain, and they mess with your hormones in horrible ways- bringing testosterone levels well above average for females, and estrogen well below average. It suddenly all made so much sense. Granted, when you’re 14 and have everything in the world stacked against you, the last thing you want to hear is that you have one more thing wrong with you. I mean, most people don’t have to deal with crap like this, right? God, what a FREAK!

Making my acceptance of the diagnosis even harder was learning that PCOS also makes it harder to conceive. Wanting nothing more than to be a mother to my own children someday, I took this news the hardest of all. I was weird. I was broken. I suddenly had the weight of this new disease on my shoulders but refused to let anyone else know/share my burden. I was a mess.

There is no real cure for PCOS but its symptoms can be maintained with birth control. I started taking the pill when I was 16 and after a couple of months, my acne went down, I was much more level-headed, and I knew exactly when I would be getting my period every month. The regularity that the birth control provided for me was enough to keep the thought of my disease out of my mind. One day at lunch, my best friend arrived back after having missed almost an entire week of school. I asked her where she had been and she said that she has Polycystic Ovarian Syndrome and one of her cysts burst, so she had to have surgery on it. Wait… my best friend also shares the same disease that I do and I never knew about it?? This. Changes. Everything.

I suddenly became more accepting of my disease as she and I talked about all of our shared symptoms and how it really wasn’t that big of a deal anymore. Over time, we learned that, not one, but two of our other friends had also been diagnosed with PCOS. What was weirder to us than the fact that we all had an uncommon disease was the fact that we all somehow gravitated towards each other before we even knew. It was also around that time that the TLC show Jon and Kate Plus 8 first came out. Upon watching what would become my new favorite reality show, I learned that Kate Gosselin also has PCOS (which was why she had to have in-vitro fertilization, and thus ended up with sextuplets.) Nothing could make me feel more normal than knowing that someone on TV has the same disease as me.

Complications eventually ensued, however, when my doctor informed me that my blood-sugar levels had risen to pre-diabetic levels and I realized that I was at the heaviest weight that I had ever been-well above the doctor-preferred weight for someone of my petite stature. I was given a medication to help lower my blood-sugar and was put on a strict Glycemic Index diet. The gist of that diet is that every food is given a number based on their refined sugar (or heavy carbohydrate) content, and you’re only supposed to eat the foods with the lowest numbers/least amount of sugar (this is also how the Nutrisystem diet works). It was really hard cutting bagels and tater-tots out of my diet at first, but eventually I got the hang of it and it actually started working! I started losing weight and feeling better. A year or so later, my doctor informed me that my blood-sugar levels were back down to normal and in fact even lower than she expected. I eventually stopped dieting as strictly (did you really think that they could keep me away from ‘tots for that long??) and had my medication reduced, and my levels are still as good as ever. I can now live my life like a normal 23 year old who just takes birth control every day because she’s responsible; not necessarily because she has to.

It turns out, there’s something wrong with everyone in the end. Whether it’s a serious disease, or something as mild as having abnormally large feet (Morgan Murphy is one of my life-heroes, btw), we’re all a little messed up. The thing that makes us not so messed up is that when everyone has something wrong with them, that becomes the new norm. It’s normal to have something wrong with you-you would be weird if you didn’t! I, for one, never thought that I would someday announce to the world that I have high testosterone levels and really crappy periods, but guess what? I do. And I’m OK with it now. I’ve learned how to control it and how to not let it control me. I’m sure that once I start trying to have kids, living with this disease will start to bother me again, but for now I’m more than OK with knowing that having something wrong with me is actually kind of normal.

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