How I Learned That Living With a Disease is Normal Danielle Romeo

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.

comments

Please help us maintain positive conversations by refraining from posting spam, advertisements, and links to other websites or blogs. we reserve the right to remove your comment if it does not adhere to these guidelines. thanks! post a comment.

  1. I can completely empathize, as I was born with a genetic disorder known as Mosaic Turner’s syndrome. Doctors have no idea what my reproductive future holds, which is quite possibly the single most frustrating aspect of the disorder. So far I’ve defied all the odds: am smart, successful and look like a regular woman. It’s comforting to know there are others out there with similar thoughts on their minds (though I’ve never met another Mosaic Turner woman). Thanks for sharing your story!! As you can see, you’ve started a new dialogue.

  2. I found out a few months ago that I had PCOS and it was hard to deal with at first but reading articles like this helps me and I realise just how common it is among women. Even Victoria Beckham has it but it hasn’t stopped her having 4 healthy children.

  3. I was recently diagnosed with Primary Ovarian Insufficiency at the age of 32. Basically, I have almost no eggs left and my body is mimicking that of someone who is going through menopause. And, oh yeah, I’m infertile. As someone who has always wanted to be a mom, this threw me. And I felt weird. I didn’t feel like I was a part of my peer group. I’m still coming to terms with it, but it’s HARD. And I have yet to meet someone else who’s experienced this. Thank you so much for this article. It helps to read about others in similar circumstances.

  4. I have PCOS too! It’s always comforting finding out you aren’t the only one silently (or not so silently) suffering. Reading your article made me feel better on a really crappy day. Thanks.

  5. I have it too. I still deal with the acne part of it (I’m 22, universe, gimme a break!), but it has been more manageable. It’s good you’ve found people who have it and can relate! I haven’t really been that lucky yet, but this article gives me hope!

  6. Thank you for sharing your story! I KNEW something was wrong with me and I went through so much trying to get a doctor (and my family) to recognize my symptoms and to help me. I tried everything – maintenance with BC, restrictive diets, estrogen supplements, heat for pain, sleeping pills, the works. I was in so much pain, it was hard to function like a normal human being. I had 2nd, 3rd, even 6th opinions before I was properly diagnosed. My PCOS was so severe, and the subsequent endometriosis, that I had to have a full hysterectomy at age 23.
    That was 2 years ago this July, and I am proud to say I have never felt so strong and so healthy!
    I know how much I struggled and I just wanted to say that it DOES get better!
    Articles like this raise awareness and prompt women to ask their OBGYN questions. THANK YOU!

  7. I also have this but have not found the right birth control. I was on Yaz- but we have all seen those commercials. Do you mind if I ask what kind you take? Thanks.

  8. Loved your article!

    My periods have always been crappy, like REALLY crappy. So crappy that I would right a ´will´ in which I would state which friend or family member got what from my belongings, beacuse I thought I wasn´t going to make it out alive and this was EVERY month. Ok, maybe a was a little dramatic but my periods were REALLY bad and I just didn´t get why my friends, sister, mother, aunts, cousins and basically, every other female I know didn´t have such crappy periods as me.That all changed last year when I was diagnosed with PCOS. Since then have been on a estrogen meds/healthy diet/ excercise treatment and I feel much, much better.

    I also freaked out when I found out that this disease makes it much harder to conceive but my doctor, who is also a fertilization expert, told me that this disease is rather common and that I shouldn´t worry about it too much for now.

    Since being properly diagnosed and going on a treatment that is actually working, I have a more positive outlook on my disease. Knowing what is wrong with me, that other women are going through the same things as me and that it´s totally controllable makes it alot better, too.

    Thanks for sharing :)

  9. I have this too and can completely relate to the frustrations. It suck feeling pregnant all the time because of your wackadoo hormone levels while knowing you are going to have trouble getting pregnant. Life gave us a double burn.

  10. This was a great, insightful piece. Thank you so much!