Reclaiming a syndrome: embracing vs. cursing its existence

September 8 2015 | Guest post by Little Bear the Bearded Lady

Polycystic Ovarian Syndrome Awareness

Lots of things get "reclaimed" — body shapes, offensive words, etc. Today I'm doing something bizarre: I am reclaiming disease.

September is Polycystic Ovarian Syndrome Awareness Month.

I'm going to present you with a narrative that is NOT popular with Polycystic Ovarian Syndrome: I am proud of and happy with me having PCOS. Because what it gave me is a beautiful, soft, warm, luxurious face and body full of curly, beautiful fur. Like a tree, I am decorated in moss from my face, neck, chest, and nipples down to my belly, cunt, back, asshole, and legs.

It is my crowning and all-enrobed glory. It is my pelt. It is my fecund, abundant femininity sprouting forth in pheromone-laden, primal, earthy joy.

I am not beautiful despite it. It is part of my beauty.

So, yes. I have trouble losing weight around the middle, and my periods are torture, and I can't make babies. (I'd rather adopt anyway!) I look at it as a small sacrifice for not just my fur but for what I have been able to do with it — I raise visibility.

I offer an alternative route to self-loathing (not that shaving is self-loathing. But thinking you are a "mistake" is). I tell women they don't have to "be grateful for whatever they can get," and settle for concern trolls, fetishists, and white knights. I show that a woman can — if she wants — be hairy AND happy.

That said, I do not want to trivialize the trials of those people with PCOS. I do understand and recognize that it causes pain — emotional and physical — for many people. I honor that, I respect that, and my heart breaks for them.

But with so much of Polycystic Ovarian Syndrome rhetoric revolving around phrases like "overcoming" and "battling with" and "suffering from," I want to expose a different viewpoint. I want to — without policing or shaming — show that one can, if one wants, embrace their endocrine variance as part of what makes them special and beautiful.

I'm proud of my beard. I'm proud of my hair. I'm proud of my high testosterone. I'm proud of my ovaries for being the ovaries they are.

And if all this does is show others with PCOS that it doesn't have to be a sentence? Then that's good enough.

  1. This has been really well timed for me. I was diagnosed with PCOS yesterday, so I'm still in the very early stages of mulling it all over and working out what impact (if any) that diagnosis is going to have on me.
    Thank you for an incredibly well timed and positive post – it's made a difference here. x

  2. As someone who was diagnosed with PCOS at 16, I'm always a little surprised by some of the narratives around it. At most, I find it mildly inconvenient. It's never had a big impact on my life – I find it harder to lose weight that I would have otherwise, and I average three periods a year (but PMS rather more often, and usually for several weeks at a go!). I admire people whose symptom have a bigger impact on their lives and the different ways they deal with it. My doctor told me one in three women have PCOS (though a lot don't find out until they're trying to get pregnant), so we're all in good company!

    • I think this is exactly why it's impossible to have one narrative that will apply to everyone. Not only do people respond to the diagnosis in different ways (i.e. embracing vs cursing), but the effects of PCOS fall along such a huge spectrum. My version is so mild that my doctor questioned whether to even give me the actual diagnosis. Like you, it's maybe been a mild inconvenience so far in my life. For others, it's debilitating and can cause infertility or diabetes. It's hard to say exactly how people should feel about an experience when those experiences can be so vastly different. I admire the author's outlook, as well as her understanding that it's not necessarily how people *should* feel, but that she's validating it as a totally acceptable (and wonderful) way to respond to the diagnosis.

  3. Thank you so, so much, Offbeat Home for having me!

    I was trepidatious about writing this because in the past my refusal to "suffer" from a condition that I didn't think made me any less beautiful or less of a woman, has received a lot of backlash.

    I had to disassociate from the PCOS community (groups on FB and such) because the communal bonding was SOLELY over self-loathing & suffering – no baby, no weight loss, hair, husband turned off, etc etc.
    And I don't mean that in the smug-neurotypical-way of, "stop being sad and just deal with it."
    The fact is, women/femme identified people are often judged by (among others) 3 things: their thinness, their hairlessness, and their abilities as mothers. And PCOS makes many people chubby, hairy, and low/infertile.
    So the problem is societal, and they are victims of its judgement.
    But because the "suffering" is SOOOOOO accepted, instead of welcoming a differing point of view – enter: me – they lash out, accusing me of "seeking attention (my favorite)," "shoving my lifestyle in their faces," and "making a mockery of the disease" and, worse, "making a mockery of womanhood."
    That one hurt the most, and I left all the groups. People begged me to come back, but nope. I am happy to educate the willing, but not the resentful.
    I'm only a masochist in the bedroom, lol.

    So that there are people that welcome this point of view means a lot. Thank you so much.

    • Thanks for this alternative narrative. I'm in my 40s & had PCOS before it was a "thing"…couldn't figure out why I wasn't thin like so many other girls, why I had pokey little hairs on my chin, why I couldn't get pregnant despite many "oops" moments ๐Ÿ˜‰
      While I do pluck regularly – it's my thing – I truly appreciate the fact that the next gen of PCOSers have a much more body positive arena in which to share viewpoints.

      I lurve my curves, hate the pokey hairs and adore the fact that I never wanted kids anyway…saving more of my time for being the best damn auntie on the planet.
      Everyone wants to paint women as victims of something – so much so that we are just now (within the last century) starting to break hundreds of years of chains.

      From voting rights to proudly saying to anyone who wants to put you down "Eff you – I don't "suffer" from anything except your narrow world view", posts like yours remind us that we are strong as individuals and practically unstoppable as a team. BRAVA!

    • I love your attitude ๐Ÿ™‚

      I was diagnosed in 2009 and for me it's not a massive issue except when it is – I struggle to lose weight and after 6 years of severe disability, which is getting better, this is a struggle for me because I gained so much while immobile. And the cyst burst pain is absolutely horrendous – worse than child birth imo.

      HAVING SAID THAT, I still love your attitude. While it can be devastating not to fit into the paradigm of worthy and attractive, there is DEFINITELY more to life and the choices you've made to embrace what your body is and looks like, I am willing to bet makes you a happier person. Societies opinion of women isn't worth the suffering it causes.

      I am 35 weeks pregnant despite disability and PCOs and weight issues and my body is fucking incredible – sustaining and creating and growing life despite everything it has been through and there is literally no one who could ever say some snide ass remark that will take that reality away from me. I would have been happy with my life had we never been able to have a baby, and I am happy because we can have a baby. Either way this body has survived a lot and I love it.

      Thanks for giving another perspective I can share with my friends who have PCOs who still see it as nothing but shameful.

  4. Though I was diagnosed with PCOS back in 1995 — *&* I know *Norplant* birth control Triggered it- ( I had it removed 4 years early (it was a 5 year birth control plan implanted into my arm) So, This is not *natural* for Me; I SO Appreciate You. You're a BRAVE AWSOME LOVING *&* ADMIRABLE. You SHOWING*UP Beaming Your SELF LOVING BEING Is Appreciated *&* Thank You For Shining Your Light Big *&* Bright to Help Others See The Way To Self Love. That Big Dark*Seeming Path Has SO Many Carriers Of Flame To Glow Up the Journey For The Fearful/Scared/Hurt to Find *&* Join In Community, Love, Acceptance. In Turn Adding Their Shine To The Big*Bright. <3 . <3 Thank You.

  5. *claps hands* Thank you for this perspective!
    I don't feel quite the same – I do not enjoy my excessive sweating and the possibility of having a very difficult time conceiving children does worry me. But on the other hand, I do enjoy my hairyness, and I do feel proud of my body and the way it looks! A little of this, a little of that ๐Ÿ˜‰
    Thank you for throwing another way of thinking out there. It certainly will help me come to a more accepting and proud place for myself ๐Ÿ™‚

  6. So glad to see this today! Not a fan of PCOS, but even less of a fan of being told how I should feel or that I am less than because my body is different. I had to leave the groups too. Thanks for your post. It made my week! Here's to you!

  7. I was diagnosed when I was about 16. My case is relatively mild, some extra hair but it goes along with my Eastern European heritage, a little more trouble with weight loss but otherwise it doesn't have a huge impact on daily life. Somehow after adjusting what I eat my periods have normalized and I have an extremely regular cycle, this has also helped weight loss. My husband and I are working on conceiving but since he is a trans-man its hard to say which part is the biggest obstacle. (We like to joke that he has an incredibly low sperm count).

    Thank you for reminding me that this is not that big a deal and does not overtly affect my life. It is in fact just an aspect of me.

  8. I support anything or any way of being that derives self-love and happiness. Your coping mechanism is full-on acceptance of your whole self. I can't think of a better way to live. Well done, you!

  9. I think this article is spot on… not because of PCOS, but because of how we are all diverse and "imperfect beings". I struggle to embrace my imperfections and illnesses because they make me less than ideal. However, I think it is part of what makes us human, wonderful and lovable. It sucks that mainstream media doesn't always see things that way, but I think (hope) that the world is changing and we all will rebel against the norm of perfection and embrace our flaws.
    -For the record I am dyslexic, hard of hearing, full of food intolerances, socially awkward and perfectly wonderful just the way I am.

  10. For the record, I love your beard too. You wear it very well.

    I've never been diagnosed with pcos, but womanly facial hair is a genetic trait I definitely inherited and it's often led me to wonder about the etiquette. As a coward and one who firmly believes that if i can't grow a full beard i simply won't let out grow at all, I shave all mine off; but I've silently admired many women for choosing not to. Do I state my admiration to these women, or is it considered impolite to even bring it up?

    • That's a good question!
      It's hard to say, because realistically it varies person to person.
      I would venture to guess that if a woman has what appears to be a month+ worth of growth, chances are, she's not hiding it. And I would *imagine* it's ok, though it wouldn't hurt to back it up with, "would you mind if I commented…"

      If a woman is sporting stubble, tread lightly. She may be new to growing OR she may have missed a day or two of shaving, etc.
      Back when I was working real hard to hide mine, hearing someone say, "I noticed some stubble…." would send me into panic.

      Clearly, I've come a long way.

  11. I don't have PCOS, but I do have endometriosis, which has had a huge effect on my quality of life due to issues with chronic pain (at times, hardly able to do anything besides lie in bed, let alone even thinking of being intimate with my partner). I admire your outlook and strength of character in embracing PCOS and everything that comes with that, including that others may not be able to do the same for any number of reasons. I can understand why it might be off-putting to some, since it can feel like you are saying that people should "suck it up," kind of like someone telling a depressed person to "just decide to be happy." I appreciate that you took the time to acknowledge that in your comment post-article. As someone who has been dealing with life-altering circumstances because of endometriosis, which developed in my early 20's, I know that it is something that I will never be able to embrace because it has caused me so much physical pain, which has in turn lead to emotional pain (side note: pain and depression/anxiety actually operate on the same neural pathways, which is why the two tend to coexist; it ALSO means you can actually treat chronic pain with anti-depressants!). While I try to appreciate my own strength in getting myself through school and into a good job throughout all of it, I still hold a significant amount of resentment toward the specifically reproductive parts of my body. I am finally starting to accept things as they are, I think, helped along by a low-dose antidepressant that is seeming to (finally) be alleviating the chronic pain. But I know it will be a long road.

  12. I'm so happy to see you post this! I have to admit that I had to bookface stalk you (just a little bit) after the article about being the bearded lady. I love your photos!

    My facial hair is sparse compared to some. I get my lovely collection of skin tags removed every few years. When random strangers ask me when I'm due (thanks to my belly fat), I like to tell that "I'm just fat." I'm not sure why that makes me so happy, but it does ๐Ÿ˜€

    I haven't had to suffer with infertility issues, mine has been more of an emotional roller coaster. In my early 20's I "battled" depression and anxiety with all sorts of anti-medication, never finding anything that touched the issue. I had narrowed it down to birth control meds that seemed to make me crazy (I could cry if someone looked at me funny, and I tried a variety). So about 18 years ago I went in to get an IUD, long story sort, I ended up minus an ovary and my other tube tied. Later finding out that I have PCOS. I finally knew what was "wrong" with me. About 10 years ago, I started taking Metformin to help balance out my emotions (less crying around that time of the month). I feel great, I feel normal again, I don't feel like there is anything "wrong" with me. My body may always be lush, but lush is more comfy than a bag of bones.

  13. One day I will have the balls to be just like you. Thank you for being strong, you are so inspiring to those of us who aren't there yet.

  14. Sometimes I wonder if PCOS is like, a real thing. I stopped actively "treating" my PCOS long ago (with rad sideburns to prove it!), and I occasionally find myself wondering if I am "suffering" from an actual disease or from the medical establishment's internalized misogyny and attempts to pathologize the natural spectrum of hormones present in the human body. #notadoctor #butstillIwonder

    • Have totally wondered this myself! Do I have a disease, or do I just have higher than average testosterone levels? And is that a problem? There's no definitive test for PCOS, it's just a collection of symptoms, so it's interesting to think about. I guess that's why it's called a "syndrome"? #alsonotadoctor

      • I do think, considering how prevalent PCOS may be, that a lot of symptoms have become part of a misogynistic narrative, but the symptoms go beyond the visible external ones that are part of that narrative. I had an ultrasound when I was diagnosed which found (after some searching!) so many cysts on my ovary it had actually been dragged down by its own weight. God knows where it's ended up a decade later!

        • Oh absolutely! I was actually just re-thinking my comment this morning. My "is it real" feelings are really restricted to my own mild symptoms. PCOS is definitely something that can cause real physical problems, and I don't want to diminish those by doubting the necessity of my own diagnosis.

    • I've had a special sonogram that actually showed me all the "pearl like strands" on my ovaries that confirmed my PCOS. So, while my package of symptoms could easily lead me to shrug and say, "meh – I don't mind a furry face" I do know that I actually have PCOS and therefore need to be more alert to certain areas of my health I would otherwise ignore.

  15. Thank you so much for writing this and for enabling others to find hope.

    Reading up on inflammation, which as I understand it causes many of our symptoms and other health risks, has really helped me to feel that I can take more control of my health.

    • I've had a lot of success with modifying my diet, eating more like a diabetic. It eased many of my symptoms. Which isn't necessarily what everyone wants and it is very restrictive to be on a diet like that, but it was what I wanted and it's been working for me.

  16. Man you guys are so great and empowering yourself and I am just sitting over here going I hate my body. Seriously though I am happy for you guys. I wish I could be at that awesome place of self love and radical self acceptance.

    I have had body issues for over ten years, and really I think it has minimal to do with "society" and more to do with I am tired of being tired and sick of being sick. I mean who really wants to feel like crap all the time. And my mom has similar issues and likes to tell me to just push through the day. Which I try to do most days.

    And I am really angry about my periods sucking and my infertility struggles. I literally *dreaded* my "time of the month".. I have since I was 12 and it seems to get worse with other issues cropping up. And I oscillate between being very very angry about my bodies inability to "do" pregnancy right. Yes I know that adoption is a good option. One we have sincerely researched out. But there is just something so emotional about your body not doing what it is meant to do and it feels like a breech of trust. I know I should be happy because with a LOT of hard work on everyones part (my husband, myself, the specialists) I have an amazing 8 year old and a little boy on the way. But its hard to not still be mad and let down. Miscarriages before and after my daughter, years of "trying". Clomid makes me a crazy bitch. My body has literally fought this pregnancy basically the whole time. I have been given medication just to suppress my body flaring up and keep him in there. Oh don't get me wrong I would do it all again in a heartbeat but its hard not to be resentful that its happening in the first place. I am very excited about my son. Its very very hard to be okay with "only" having two children at 27. I figured since I was about 16 I would be done having kids at 28 and would have like 4-6 and just be focused on being a good mom. And for me it has nothing to do with societies expectations and more to do with my own. I didn't expect to have chronic diseases. I didn't expect my first marriage to fail epically. I didn't expect that it would take YEARS for me to find someone who valued me and was the kind of partner I deserved.

    Anyways maybe its the hormones talking but I don't know when I will be as okay as y'all are.
    When I grow up I wanna be like you.

  17. Thanks for sharing this! I got my PCOS diagnosis in 2011. I was having terrible pains around my ovaries and symptoms of hypoglycemia at the time. Prior to that, I had been dealing weight gain and depression… something that most doctors are going to shrug off and tell you to get on the treadmill. Since my diagnosis, it's been a flurry of different medications, different doctors, and finding the right combination. More than anything, my diagnosis made me more committed to my health and more accepting and aware of my body. I don't think PCOS is something to be ashamed of or embarrassed by… rather, I think it's important to discuss it openly. There's still so much we don't understand about the genetic and mechanistic roots of PCOS. Even the other posters here have had different symptoms and experiences. So again, thank you for promoting awareness and starting a discussion. Stay fabulous, my friend ๐Ÿ™‚

  18. I don't think I could ever or will ever like or accept the symptoms of PCOS in my life. I respect that you're able to do it. I am mystified by it as well. I don't think I'll ever be able to see the hair on my chin and neck as not ugly. I am not grateful for PCOS making me suffer through years of infertility before I was finally able to get pregnant. Yeah, I still hate it. For me the only acceptance comes from knowing that we all have our challenges and struggles in life and this is one of mine.

  19. I absolutely respect and admire your perspective. I don't know if the only possibilities are embracing and cursing, though. As someone who just had a total hysterectomy at 41 due to the debilitating symptoms of hormonal imbalance, I'd say PCOS and I are pretty wary of each other. My doc wouldn't take my ovaries, though, so the rest of it–the 100 pound weight gain that came on my naturally thin amd exercising from in two months ten years ago and won't come off no matter what I do, the migraines that plague me for days at a time, the muscle aches and cramps and pains, well…I guess some cursing takes place. I'm not a victim, but I acknowledge that this is not the way my body was supposed to be. And I mourn that sometimes, and just try to stay as happy as I can be.

    You rock on, seriously. I think it's great. But some of us also rock the middle way. <3

  20. Any advice? I found this article a while ago and came back to it just now because of my PCOS health concerns. I was put on birth control for PCOS when I was around 15 and now, at age 22, I am looking into my lifelong fatigue and muscle pain issues.

    Can anyone tell me about their experience with the diabetes risk? I have never heard about it before and then an OBGYN kept telling me that if I do not continue to lose weight I will get diabetes very soon (She scheduled a blood test for a couple weeks but had no blood test results to base this on). I am not overweight, and I eat a very healthy diet (with normal variation like some fruit or desserts after meals sometimes, and a couple beers a week). No other doctor has expressed concerns about my weight, even when I was at my heaviest. She congratulated me on my quick weight loss even when I expressed worry it was not intentional and could be a result of a bad thing. She told me that she was so happy I was finally taking my weight seriously and that I finally understood the importance of a healthy diet. She also said that I have to trick myself into liking exercise (even after I told her I love to exercise, but I couldn't do it for the past 2 weeks because of sports injury-related migraines).

    I told her that I have always actually eaten a low-glycemic diet (being consistently full reduces my eating disorder relapse), and the only difference between my lifestyle this year and last year is that I am sleeping at least 5 hours every night and I am not skipping meals bc of stress or eating a free pizza/ salad as my only meal bc of work (I understand that these things help with weight management). I am also exercising less vigorously, which lets me keep up a consistent exercise schedule.

    She told me I need to actually take this seriously and start eating a low carb diet. However, I actually feel better when I do eat a healthy amount of carbs with my meals then when I just eat protein/fiber. She said if I don't start living like I have diabetes for the rest of my life I will get it within the next few years.

    I understand that PCOS makes people more at risk for diabetes but I am really frustrated by this doctor and frustrated because of how many doctors care more about weight than listening to me (even if I explain my "normal" comparison weight in high school actually from an eating disorder/ being denied food at home). I'd like to hear if anyone has had experience with PCOS and pre-diabetes or blood sugar problems. When my eating disorder is in relapse my blood sugar seems good and I don't feel hypoglycemic.

    • PCOS does put you into a higher risk category for diabetes. However, I'm seeing a theme of your doctor not listening to you and paying attention to what you're saying vs. what she already thinks. If I were in your shoes I would try to find a new doctor who listens to me!

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