PCOS shame?
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EmpressoftheCosmos
Posts: 21
I consider pcos to be my little secret that I dont share with friends or family. I am thankful that I know that I have a condition and I have made the choice to live a healthier lifestyle. I know that my having pcos is not my fault and I shouldnt be ashamed, but I cant help but feel somewhat ashamed or embarrassed. Of my sisters I am the only one who clearly has pcos symptoms, so I dont feel confortable talking about it. Ive never told my friends or family about my having pcos, the only person who knows is my mate. Am I the only woman who is embarrassed about having pcos? Please dont judge me...
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I am certain that you are not the only woman to feel embarassed about having PCOS. I was only recently diagnosed, beginning of November, and I haven't really settled into how I feel about the diagnosis, but I can say that I am choosing to discuss the diagnosis with only a few people. I told a couple friends, a couple coworkers, my mom, and my husband and I really only told them because my meds are making me feel so ill I had to explain it somehow. Even in that limited group of people, none of them really understands what PCOS is or what it means. I find it difficult to talk about with people who just don't "get it." I barely get it myself. I have been embarassed by my symptoms for many years (inability to lose weight, hair loss, etc.) so the diagnosis itself doesn't really embarass me further. In fact, it kind of justifies what I've been saying all along, there's something wrong with me.
I don't think you need to tell anyone, but I don't think you should see the diagnosis as any failure on your part. It's genetic, there's really no other explanation. Try not to be embarassed or beat yourself up, you were just dealt a different hand than other women.0 -
I'm not embarrassed about the syndrome, but the symptoms of the extra hair on the face (I can grow a beard in like 2 days) is super super embarassing and I do not talk about it...EVER...and my feelings are crushed when someone points it out...as if I already didn't know(thanks captain obvious) I try lasers, but the crazy thing about that is it stimulates hair growth elsewhere (like now I have hair growth on my cheek) and recently i suffered a burn to the face...embarrassing to the max! Not being able to conceive is also a very very sensative subject for me esp since all of my friends and ppl i went to highschool with have kids now.0
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It has been interesting to me that when I do mention it to people, so many of them have it too! My stylist for example - I told her because my hair was falling out and I asked her if she thought the loss was more than average. She told me she has it too - and we chatted about symptoms and what has helped and what hasn't.
What I'm not sharing with everyone in the world is that we're TTC. Only a few people know that. I have a daughter so I've been though this before and didn't want to deal with the whole "Are you pregnant yet?", "How 'bout now?" thing.
I do want to say, though, that it can be freeing to talk about it. A friend of mine is TTC as well and I told her because I wanted her to understand that it might be hard for me if she gets pregnant and I don't. So we've discussed what would happen if that happens and how we would feel, etc. It really helped.0 -
I was really ashamed at first, when I was a teenager. Made it really hard to get close to anyone. My mom knew because she was the one taking me to the doctors to find out what was wrong. I now openly talk about it. My husband is fine with all the symptoms that come with it. I am still embarrassed by the gorilla hair. Finding that a lot of women I know are dealing with the same thing and it's so nice to have others talk about it.0
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Hey ladies,
I have it too. I've decided to be really open about this, because I want people to appreciate how common it is, and I think it's terrible that so many of us are treated like we're crazy for years until we're finally diagnosed. If there is more awareness, there will be earlier diagnoses and better treatments.
That said, some things I am open about and some I'm not. I'm open about having PCOS, and I will talk about how it causes my acne and hair loss, because those things are already obvious to the world- might as well explain them so people don't assume I have terrible hygeine, or I have a contagious disease or something :sick: But, I'm not really open about the anxiety/depression, fertility problems, the way it affects my self esteem, etc- basically everything unseen, because it still makes me too emotional to talk about in public.
Glad to see that there are others like me on here....good luck with everything!0 -
Andiimarie,
Thank you soo much for sharing your story... Its great to be able to connect with other women who are living with the same condition. And I definitely agree in the fact that knowing that you have pcos and understanding how it affects us is a key factor in trying to combat the symptoms. I wish you lots os success on your weight loss journey, and again thanx for sharing.0 -
Fittyfittybum,
Thanx for sharing your story... I agree that excessive hair growth is a really embarrassing symptom of pcos. I am a true girly girl and to have hair growing on my chin, neck etc. has been really difficult because I try to pluck, conceal etc but thats not always enough. I feel horrible when I sense that someone is staring at my excessive hair growth it affects my self esteem and my relationships and interaction with others... The infertility situation is extremely difficult as a woman because many of us have dreamed of having children and then to find out that you may have difficulty conceiving... crushing.0 -
@miranda_mom
Ive thought about sharing my situation and I know that the condition is pretty common and if I knew other women who had the condtition maybe I wouldnt feel so alone and semi-ashamed. The women in my family conceive pretty easily, for example in 2010 I suffered a miscarriage at 16 weeks, later that year my sister stated that she wanted to have another child and before I knew it she was pregnant. I wanted to be happy for her but I felt so down and depressed. Its weird sometimes when I see pregnant women I smile and congratulate them, and other times I feel envious
. Whenever I feel envious I try to hide it but Im really sensitive and Ive shed a few tears when Ive seen random pregnant women in public. Im thinking of sharing my pcos story with my best friend as I know she wont go telling everyone and she wont make me feel bad about my condition. Thanx for sharing your and good luck with your ttc and wlj! Hugs! 0 -
@LoyalAngel
Thanx for sharing your story. I know how it is to be apprehensive when it comes to getting close to others esp. when you have pcos. I didnt self diagnose myself until about two years ago when I gained a considerable amount of weight which prompted my cycle to be absent for months etc etc. I fell into a dark depression and I isolated myself from everyone, which in turn led to poor eating habits which of course made my pcos more prevalent. I can relate to the gorilla hair and omgeeee it sucks! I get embarrassed and or angry when people stare... Again thanx for sharing and good luck with your wlj!!! Maybe one day I will have the courage to talk about it openly with loved ones.0 -
@pland54
I feel we need more open discussions about pcos. Perhaps on television or even in magazines. We need a spokesperson someone who is in the public eye who will standup and tell the world that pcos exists and that women who have pcos are normal. Prior to self diagnosing myself I didnt know pcos was a condition. I definitely feel that early detection and awareness are key elements for women living with pcos. The infertlity, hair loss, excessive hair and depression are difficult to live with and everyone isnt understanding. I feel that if I shared with some fam/friends it would just be something to gossip about...0 -
very embarrassed. I have also had people point out the hair on my face (gee thanks). I use to have very thick long hair, now i cant get it to grow and have bald spots all over. I was at work one time and heard people making jokes about my hair loss (heartbreaking) i did not know at the time what was wrong with me but even now that i know i have it, it hurts I DO HAVE FEELINGS. i also have the dark patches around my neck, and elbows, people think i either have bruises, or im dirty i do not tell people what is wrong with me because they dont understand. i did try to explain 1x what i had to someone at work who was asking about my medication they had happen to see in my bag, they looked at me as if i was lying or exaggerating. No i must only be fat because im lazy. i can remember being a teenager, my best friend could eat what she wanted and never exercise and never gained a pound. One day she tells me "i dont understand why your big, you dont eat nearly as much as i do, and you walk everywhere" 0
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I can definitely relate to the problems with acne and with weight, although with Spironolactone I've been able to keep the hair growth to a minimum. But having acne at my age (31) and my friends knowing that I'm constantly on a diet, but still not losing weight is a big source of shame to me. So frustrating when others can lose weight just by not eating dessert and going to the gym a few times a week, and one pound loss to me is blood, sweat and tears... and it comes back right away if I'm not super careful. I feel like people think I'm lazy.0
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I also found that I have a few food sensitivities, (casein - milk protein, and gluten), so not only am I always eating low -carb, but I have to ask for special gluten/dairy free options. And I'm still overweight. They must think I'm a HUGE diva. But seriously, cutting out dairy (and products with dairy or casein) has really drastically reduced my acne. If anyone else struggles with cystic acne, consider trying dairy free for a month or so.0
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But having acne at my age (31) and my friends knowing that I'm constantly on a diet, but still not losing weight is a big source of shame to me. So frustrating when others can lose weight just by not eating dessert and going to the gym a few times a week, and one pound loss to me is blood, sweat and tears... and it comes back right away if I'm not super careful. I feel like people think I'm lazy.
Exactly this haunts me every day. Feels almost like I wrote it myself!0 -
But having acne at my age (31) and my friends knowing that I'm constantly on a diet, but still not losing weight is a big source of shame to me. So frustrating when others can lose weight just by not eating dessert and going to the gym a few times a week, and one pound loss to me is blood, sweat and tears... and it comes back right away if I'm not super careful. I feel like people think I'm lazy.
Exactly this haunts me every day. Feels almost like I wrote it myself!
me too except I'm 36 ;-)0 -
i feel shame towards myself for having it. just got diagnosed and i'm pretty sure it's a result of years of being overweight. still, i'm open about it & hoping the diagnosis will help me shed the weight at last. it's kind of a 'which came first, the chicken or the egg' situation for me. i'm not too hard on myself but i feel i may have caused it & that's a tough pill to swallow.0
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Caguppie - Did someone tell you that being overweight causes PCOS? I know that they are uncertain about it's cause, but I think they are finding that the weight tends to be caused by hormonal imbalances and hormonal imbalances are linked back to genetics. Also, skinny women can have PCOS too.
I know we all have our own thoughts, but I wouldn't be so hard on yourself after receiving the diagnosis. So much of this is out of our control.0 -
I can definitely relate to the problems with acne and with weight, although with Spironolactone I've been able to keep the hair growth to a minimum. But having acne at my age (31) and my friends knowing that I'm constantly on a diet, but still not losing weight is a big source of shame to me. So frustrating when others can lose weight just by not eating dessert and going to the gym a few times a week, and one pound loss to me is blood, sweat and tears... and it comes back right away if I'm not super careful. I feel like people think I'm lazy.
This is me. I feel the same way.
I'm on Metformin now, trying to get it under control. But the horrible acne, inability to lose weight - I'm quite embarrassed by how I look now. The worst part is my doctor KNOWING I have PCOS, being on meds to help it, but it being hinted that I'm obviously being lazy or not trying, since I haven't lost more than a pound or 2 and it comes right back.0 -
I don't feel shame about it, per se. More like some serious rage and anger. I tell almost everyone that I have it because their faces look at me like i'm a lazy slug. Granted, yes, i can be lazy. The only part of anything i don't mention is the hair. I hate it. It's the one single thing i hate the most from this PCOS stuff. the weight bothers me, but not nearly as much as the beard i sprout every day. the chest hair is rather discouraging as well. So, when someone gives me that look that i'm fat because i eat a lot or am lazy and i'm only eating like a bird because i must be on a diet, i want to punch them in the face. Instead i just tell them i have a hormone issue (my thyroid's broken too, actually) and to GTFO.
it's the worst feeling when it comes from inside your family and when your 'intelligent' close friends don't seem to get it 0 -
I don't feel shame about it, per se. More like some serious rage and anger. I tell almost everyone that I have it because their faces look at me like i'm a lazy slug. Granted, yes, i can be lazy. The only part of anything i don't mention is the hair. I hate it. It's the one single thing i hate the most from this PCOS stuff. the weight bothers me, but not nearly as much as the beard i sprout every day. the chest hair is rather discouraging as well. So, when someone gives me that look that i'm fat because i eat a lot or am lazy and i'm only eating like a bird because i must be on a diet, i want to punch them in the face. Instead i just tell them i have a hormone issue (my thyroid's broken too, actually) and to GTFO.
it's the worst feeling when it comes from inside your family and when your 'intelligent' close friends don't seem to get it
oh hell yes... I hate it when my family (sisters) who were lucky and didn't get it or my mother (I think she has it,m but doesn't want to "admit") "forget" that I can't eat everything and that my low carb is not about being fancy!0
