CarrieBerry

Can you tell me what you say to people?

I want to start telling people about PCOS for many different reasons. I want to help educate everyone on PCOS and its effects, help my family members whom I suspect may have it, and also so that people might start to understand why I always have so many things wrong with me (so they won’t be so judgmental all of the time).

My question is HOW do I explain PCOS in a way that people will understand? If you are open about PCOS what do YOU tell people?

I especially don’t want to go into a long discussion with some people about it, but others I wouldn’t mind. What terms and information should I give them? I really don’t want it to turn into me listing off all of the hundreds of symptoms I have (well not that many but sometimes it feels that way) because that can be embarrassing.

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blu_cypress

Well, the first person I told was my guy. Had a bit of a breakdown, bawled all over him and told him I was going bald and my doctor thought I had something called PCOS that was messing up my hormones. He was so amazing--he's a personal trainer and one of his clients has PCOS, so he actually knew a little about it. Then, I told my family. And my friends. Basically, I'd done a lot of research and explained to them what I'd read.

I've recently begun telling some of my close friends at work. It started with one of my younger co-workers making a snotty comment about our boss' chin whiskers. I looked her in the eye and said, well, you know what..I've got a lot more chin hair than she does...I didn't choose to grow it and I'm pretty sure she didn't either. And it started from there.

I just explain that I have a metabolic condition that's rooted in insulin resistance. My body doesn't use insulin efficiently, so it creates excess insulin to do the same amount of work..that excess insulin gets stored as fat and, since insulin is a major hormone in the body, it has a trickle down effect and throws the other hormones out of whack..and that hormonal imbalance leads to excess hair growth on the face and body and the thinning of scalp hair.

The girls at work have been very empathetic and were surprised that I've been going through so many cosmetic difficulties...it was nice to know that they were genuinely surprised, which tells me that my almost obsessive maintenance rituals over the years really were working, lol.

For me, it's been a very empowering experience to say, out loud, that these are the things I'm struggling with...I'm working on fixing them and fixing ME...and even if I'm stuck with the cosmetic problems forever, I'm still a beautiful, vibrant woman. I've found that I prefer to be open about it rather than worrying about people whispering about me behind my back.

I probably talk about it too much, lol. But it's helped me and I think it's help a few others too...a good friend of mine was diagnosed with PCOS after I told her about me and she recognized a few common symptoms. That made me feel good.

I think the most important thing is deciding how much you're comfortable disclosing..and then going from there.

Good luck!

CarrieBerry

blu_cypress Thanks!

I've obviously told my DH and he is very supportive because he knows how long I've had the symptoms before I was actually DX and how hard its been on me. I've told my mom, sister (who I think has it), and two women at work who have relatives with it so they are understanding. I think my mom is starting to understand, but I don't think my sister gets it yet (she's 17) and at this point she could care less about fertility and a lot of the other "fun" things we have to deal with.

I'm glad you are empowerd by sharing about PCOS, I want to be that way too. I also would rather tell people than have them talk about me behind my back. I'm sure they already are talking about me though...Especially my family who have seen me put on almost 80+ pounds in 7 years thanks to PCOS and Hypothyroidism. My mom couldn't understand why I put on so much weight and even had me on a RX diet pill in high school to lose weight, which didn't work (she's the only skinny one in my entire extended family). I'm glad I now have an explanation for this because I don't think they believed me that I wasn't gorging myself on food, infact I probably ate less than her most of the time.

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februarystar

I don't make a point of talking about it. It came up with my bf because I was diagnosed not too long after we met and started getting serious. I had lots of different meds that were doing weird things for me so I had to explain myself.
I posted my mum a booklet about PCOS cos she wondered why I was asking so many questions about our family's medical history.
One day when I was sitting around with friends one of them was wondering why her period hadn't arrived and then that soon came around to me talking about PCOS.

Aside from that, I don't talk about it. I'm all for awareness but I guess I'm just not that type of person.
But then I can't think of the last time someone told me about their medical condition - and I'm sure thats not because my friends and family are perfectly healthy! lol

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dillydaydreams

Hi,
Some of my friends ask what is pcos, so I normally show them this website so they can get an idea of all the symptoms that some of us get. Most of my friends just think it's cysts as the name does make it sound all about cysts. They are amazed when they read all the other effects. It's hard to explain to a person I feel embarrassed as I suffer most of the obvious symptoms but I do my utmost to deal with them so on the outside I look ok but that's after electrolysis, waxing etc. I don't like to draw attention to my flaws. I'm hoping to lose another stone before my hols which I am hoping will help all other symptoms. This is a great website to show someone as there is a little bit for everyone here I think.
Best Wishes

blu_cypress

Carrie

I totally understand about the diet pill thing--my father actually bought me slim fast and laxatives when I was 13. Crazy. I'm glad you have such a supportive husband and it sounds like you're mom is making an effort to understand--that's great! And I can relate to feeling glad to have a "reason" for the weight struggles--it's so frustrating having people assume that I'm lazy and have no self-control...and it's also great to know what's going on with my body that causes me to gain weight so that I'm better able to change my eating patterns. It's funny, after spending years trying to eat healthy and follow that blasted carb-based food pyramid, I find out that's probably the worst thing I could be doing. Knowing what I know now, I'm happy to say that I've been able to lose quite a bit of weight...it's slow going, but it's coming off and I'm thrilled.

angel1895

I just tell people that I have a condition called PCOS... which causes cysts to form on my ovaries... and because of the pcos I dont ovulate... because most of my discussions like that start off with "when are you having another one?"

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cassieroll

I don't normally talk about my health issues because it seems like when I talk about them, they are in my face. kwim? I know I have ir/pcos and that's fine but it's not who I am. If someone asks me or if I think it could help someone else, I might give some info/advice but typically I'm quiet about it.

sweetstar

I am pretty quite about it as well. It's on a need to know basis. I agree with PP, that it's not who I am and I don't dwell on it.

I have made the nessesary changes and because of that it's quite noticeable. So I get a lot of questions that way and if it comes up it comes up. But I don't bring it up. My mom, dad, brother, good friends, aunts, etc. all know about PCOS. People offer me food all of the time and sometimes it would be nice for them to know so they don't ask me anymore. But it's okay.

wanting22

It varies by who is asking. Usually I say it's a condition that throws my hormones out of wack and explain the symptoms. Most people blow it off and think it's "cool" that I don't get periods.

lynaeducky

I told my younger sisters by explaining the basics like hormones and some of my symptoms and there are great tools online, for example you tube has great informational videos on pcos. I was so scared to tell anyone for almost a year than I just said this is what is going on and told them.

stacy_xo

I don't really bring it up. When I got the dx I told my best friends, and when I got with my bf I told him. But if you want to tell more people, I'd suggest keeping it simple cause going into symptoms can get a little embarassing.
Basically, I explained how my ovaries have cysts and that my hormones are really messed up. If they want to know more, they will ask.

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Start May 6, 2008 at 223 pounds.

June 4, 221.5 pounds.