telling your friends about PCOS

[confused]

I know this might be a weird question but did any of you have trouble telling and explaining to your friends what exactly you have? I just feel uncomfortable talking to them about it because I think they wont understand and they'll just think I am one in a billion case. Its also very embarrising, at least for me it is. Even when I try to explain to my sisters what exactly I have they still dont get it and interpret it completely the wrong way making it sound like I am some deformed species.

[Fallen_Angel_LJ]

I know how you feel. I don't know how to tell people, how you bring it up or even explain what it is. As a resut I've only told two people. My best friend J, I feel safe talking to her, and know she won't make fun of me or anything. Also, what was really hard, was that I told my friend Mike...I don't know what compelled me to do it, I was just freaking myself out about it and getting myself down, he noticed so he kinda coaxed it out of me. Ever since I found out I've wanted to tell my best mate Kergy (aka Alex) but I just don't know how to talk to him about it. I know he'd probably understand, or pretend, i just...I'm worried about telling the people really close to me that matter, and i see on a daily basis. It's not exactly easy saying your permantly gonna have this thing that mucks up ur life, or parts of it. They'll prob act all weird, maybe make fun...and because they know nothing probably behave all weird around me. It's too confusing and complicated for myself, I don't even really understand, so until I actually have a better idea of whats happening with my body, I think I'll keep it to myself.

[AmyF]

ha well at least you didnt have a girl on the floor walkin into the room where you are telling youre story to your other friends one of whom was jsut diagnosed and she intrupts you contantly telling you you are wrong and that certain things arent connected and shooting everything you say and learned down because "i was jsut diagnosed i read all the pamphets" knowing her "stuff" for about umm a month after I've been living the bad doctor, medication, side effect list for what is now going on 6 years and although I know its different for each person and we (the other girl and I tried telling her that) it took all my strength not to ***** her out and say shut up and listen or leave. the 3 girls in that room ( including me) are obvious 3 very different people experienceing 3 very different but somehow all connected issues. The rest of our friends in the room where upset with how rude she was coming into the conversation and sabotaging it like that. Seriously the only reason and only "side effect" she is experiencing is her lack of period. I tried telling her how I already know certain facts about the medication and that certain things are related and she kept shutting me down and I ugh lets put it this way..I felt like taking ll that pent up frustration I have toward the "bad " doctors, to anyone who made a comment to me about my weight, moodiness, etc. and what not all out on her, it was like a living example of all the things I had been fighting against for all these years. I refuse to talk to her, she's rather inconsiderate to everyone on the floor and I dont respect her for that and now after that night...well I'm a loaded gun. Frankly its sad that she closeminded on it.(sorry had to get that off my chest)

On the other side, it is very hard talking to friends about it, becuase you can't just say one thing without explainging the rest. Sometimes you feel like its almost not worth telling them at all.

*I'm having AF to visit so that could be why I'm still upset with that girl on the floor :?

[lsstallings]

You go girl! Definitely get that off your chest. That is what this board is for.

Now that you did get that off your chest, just know that you are better than her and your key to health and happiness is education. Learn what you can about your condition, and don't worry what some little snit down the hall thinks. Her health is her problem and if she is not willing to open up and listen to what you have learned, then that is her problem.

Just kindly ask her to leave when you are discussing this with others who are willing to listen and who may also have this problem and want to listen.

[Fallen_Angel_LJ]

Wow, Amy...she sure seemed awfully witchy. I don't blame u for wanting to take all that out on her. I would've. heh...

It's deff a hard subject to bring up...I can picture all the future convos

Me: 'I'm going to the hospital'

'Friend':'Why?'

'Uhhhhhhh...because I have to see a gyn.'

'Ya what?!?!' I don't think that's the way to tell people. Hell, I didn't even know what to tell anyone when i had the inital blood test done. Now in two weeks i've gotta miss like half the morning getting a whole load of tests done...Yeah, ya know...'I was just being tested for my iron levels, insulin levels, glucose levels...and some other stuff' I wish the damn NHS could work efficently and fit things in around our free time, would be easier huh?

[Hannah]

i didn't really have trouble telling people. they all noticed i was really depressed this week and asked what was wrong, so i told them. they were a little shocked at first but after a few minutes they had tons of questions and were really interested in if i was okay. I don't think anyone is going to make fun of you even mean people because they all relize it is a serious problem. hint: it really helps to talk about it.
hannah

[Fallen_Angel_LJ]

I'm glad you had no problem telling them :) I will tell them...in time. But, I just...I have, I've got 'trust issues' with my friends. Heh, I figured that out for myself when I realised I was depressed...apparantly that can also be to do with PCOS...I just started feeling it coz of my 'friends' but it's getting better. I have more of a social life now. So I will tell them...one day.

[lilgsyr05]

I have to be honest, I even have trouble telling people, even my best friend. I was sick for years and no one knew what the hell it was and then once they found out and pieced all the **** together they were like bam you have p.c.o.s. i was like aright thats great, im not crazy lol...but it seems like, even my best friend thinks i use it as an excuse and i feel like no on really cares or they dont think its a big deal, they act like its a cold or something and i don't expect sympathy either. i just wish people showed they cared and i dont feel like they do. idk its a weird soft subject.

[Fallen_Angel_LJ]

Hmm...That's exactl what I mean! Either everyone when act all sympathetic, or really weird. Or just be like, oh whatev. But its harder n more complicated...I just don't think anyone else understands it like we do. It's not their fault though. But it really is a weird soft subject. :)

[AmyF]

thanks girls for the support.

i had a really hard time telling people about, more on how it effects me. my best freinds knew but from back when i was diagnosed, not since i was first diagnosed did i talk about it with them. I kinda pulled the "chandler bing- sarcastic end to a comment" so it didnt seem like i cared with certina subjects btu it did. my bf back then knew and was really fine with it. Since then though I've jsut recently been comfortable enough to tell my (soon to be (june)) roomates, my closest freinds up here, and the newer best guy freind. Everyone I've told it differently to, knowing the level of comfort and disclosure and theyver been really receptive. I like to stay in "controll of my emotions" and well try to not let it bother me or my moods in front of people when a sore subject is brought up or im having a rough day. I guess my level of trust that they wont take this knowledge of a core center to alot of my weaknesses and use the against me is why i have talked to them only. Still its hard.

Thursday is the first endocrinologist appointment...ever. I'm pumped.
*ill keep it posted, lord knows ill have questions.

[gslayer]

You know, I have only told very few of my close friends.. still I didn't even go into detail really. I just gave them a very vague explanation. I am way too embarrassed to say anything more. Maybe it's just a personal fear.. your friends should love you no matter what... but I have not reached that point where I can share fully.

I dread the thought of telling my husband one day... do I tell before I get married? I have a really close guy friend who knows just a few minor details.. nothing deep.. and he has been very understanding so far. I just feel totally alone in it. though.

[dreamqueen]

Yes, I definately don't go into too much detail about the PCOS symptoms because as that whispers down the lane it can sound sooooo bad. "yeah she had a disease that makes her obese, and bald with acne and a mustache. Oh and she can't have kids. It's like she's a man." It's hard enough getting boyfriends without that visual. I don't plan to tell any boys unless I am ready to get engaged. Then I'll say "I will have to go through a lot of effort to have kids but so many people with this condition have children" It sounds hopeful but at least he's been warned. As for friends. Only my best non gossiping friends knows the detailed truth. All other people I just say that I have an endocrine problem that is completely controlable but it takes a lot of effort to find the right hormone balance to keep the weight off. I wish people were more accepting, but since they are not I'd rather just keep it sounding like a "healthy" "little problem".

[Fallen_Angel_LJ]

oh yeah...a 'healthy little problem' well that would be great wouldn't it?

I really think it's too complicated and embarassing/annoying...to tell anyone absolutely EVERYTHING. A few people I've told have a vague idea, the rest...well...they're just completly clueless. I don't even want to tell them why I have all these blood tests lately or whatever. heh. My crappy trust issues coming through there I guess, but even with the people u do trust, it's so hard. Scared they're gonna think less of you. They shouldn't...but whoever it is, there's always that nagging feeling that they will. meh.

Good on you for telling some people tho, and giving them vague ideas...

[gslayer]

Yeah, I have a hard time even trusting my trustworthy friends.

[ashlee154]

hi everyone. this is the first time i am posting. I was very recently diagnosed with PCOS. i found out a week and a half ago. I know how you all feel with your friends. None of my friends completely understand. I feel so depressed and so alone right now. I just want to be by myself but i know i have to be around people. I think i am losing my best friend. His name is Nick and i love him to death but since i told him, he just seems really distant now. I don't know why, we aren't goin out nor have we ever but i feel so alone. I haven't even talked to him in days now because of this. I don't know what to do....and i am so sick of dealing with school already and all the people. And of course, i work in a grocery store and everyone who comes through my line has babies, children, or is pregnant. So that makes me feel even more depressed because my aunt had this before she died and after trying to get pregnant for four years, she finally did and had a miscarriage at 6 1/2 months so i'm afraid to even try. I mean i am only 18 and don't want to get pregnant right now cuz i start college in august but i mean when i'm done i do want children. :cry: [/quote]

[girl1984]

as far as telling and explaning pcos to my friends.... they think im being dramatic and say "your skin isnt even bad, its just little bumps, not huge bumps"... WELL TO ME ITS BUMPS NO MATTER HOW U SIZE THEM UP.. LOTS OF BUMPS... or "u have no hair really on ur face"... thats BC I RUN TO THE WAXER ONCE A WEEK!!!... or when i complain how i cant lose weight i hear the "either can i"...
honestly i dont think anyone can understand or comprehend the side effects of pcos unless they have pcos....

[Becksterz]

I agree. Some people are just plain silly... or stupid, however you want to put it.
I feel like I am slipping from the majority of my friends... They don't understand and I don't think they exactly care. They think I am making a bigger deal out of this than it really is. I get a lot of "you don't need to loose weight" "you look great the way you are" and "I couldn't imagine you any other way." Sadly though, they do not understand that for health reasons, I have to. Hmm... and they are all fit and skinny... some of them eat crap and are still less than a size zero. Hey, at least now I know why I am overweight and haven't been seeming to loose much!

[rachie]

i agree. sometimes it is really hard to tell people. i havent told anyone the full details, just because i know they wont understand. I've sort of half told my boyfriend, but only stuff about the tablets and **** coz he was just curious as to why i took so many and why i was in hospital a lot. I know he loves me the way i am and he'll support me, but i still can't help feeling embarrassed about it and i just can't really bring myself to tell anyone.

[teddybear14]

Only a select few of my friends know that I have PCOS. My best friend since I was 8, i told about it just a couple of years ago. She has been very supportive and is a neccesary outlet for me to talk and vent about PCOS-related issues (i can talk to my mom about somethings, but i prefer not to b/c it makes her feel guilty for "doing this to me").


I told one of my good friends from high school during senior year, and she has also been supportive. however, other friends i have not told b/c of comments they have made that have made me uncomfortable, or just because i do not trust them fully. some of my close friends i have longed to tell but have not for fear or rejection. i know that if they are really true friends they would not care and would be supportive...but you never know. rejection sucks and i hate for friends to look at me differently.


several of my friend in college know that i have irregular periods and that i am birth control to correct this, however they do not know the full reason.


my advice is to go with your gut, do what you feel is comfortable, dont rush to tell people if you dont want to...you can always tell them at a later date if you decide to. best of luck, keep me posted, im here if you want/need to talk!



<3's - Lauren, 18, college frosh

[watever02]

it wasnt so bad for me cz my mates r quite understanding but one girl told a lot of other people that i was a man and i had to take pills to give me more female hormones and i got badly bullied cz of that. sometimes i just wish i was normal :(

[teddybear14]

aw bex im sorry that happened..yea some people just dont understand...they dont even try to or want to...maybe they just cant. Honestly, you are better off without people that shallow as friends...if they are going to be that immature and cruel...they do not deserve your friendship!

As much as it sucks, i guess telling people tests your friendship/relationship n shows who really loves you for you.

One of my closest friends I've never told because she made some comment about how women with facial hair are really ike men, not knowing what her comment meant to me. I value her friendship but I'm scared to tell her, because I dont wanther to look at me differenty..i think she is a good person but i dont think that she would really understand.


You just have to think about whether the person you are considering telling is mature enough to understand the situation..some people just can not or can with great difficulty. Use your best judgement in telling others, and for anyone who makes fun of you for it....know that you have plenty of people here who have your back and who think they are wrong and would gladly yell at them for you, myself included.


hope you have better luck in the future!


P.S. I feel that way too sometimes, that i just want to be "normal"...but you have to rememver that everyone has something going on in their life...something "wrong" or "abnormal"...some people can just hid it better than others. no one is perfect, and hopefully this struggle will make you stronger. i believe things happen for a reason, and dealing with this is supposed to make me stronger, and more open and compassionate in understanding others...I cant think of any other reason why....just remember, you are not alone!

[nzgurl14]

finally ive found people who going through the same stuff as me! ive told only my best friend about it, but not all the details coz i jst cant....no one understands cept people who have pcos. their lyk "its jst hair, get over it" but they have no idea what is lyks to feel ugly and lyk a man!

[Ara]

The first person otside of my family that was told was my boyfriend. The main reason I told him was because he knew I went to the doctor's for blood testing and we were in study hall practicing for our choir concert. We decided to take a break, and he asked me if I had heard anything back. So I told him, and it was the first time I cried about it, because we've been talking about having kids lately, and that was when it hit us both that that might not be possible--at least not naturally. The next day, he didn't come to school, and I got really scared that it was his way of needing a break from everything, but it turned out he had an orthodontist appointment... ^.^ He came to meet me at lunch and brought me a rose.

Telling everybody else was easy. I wrote it on all three of my blogs, so all my friends who know me well and check them could see them, along with some websites. They all asked me questions, and I answered them the best I could, but we mostly don't talk about it.

Always--
Ara

[Becksterz]

I know I put this in a totally seperate topic, but my informational booklet it almost done. If this would help any of you to tell your friends (I know it will help me as soon as I get them printed) then let me know and I will send you some. People are asking me to send them via e-mail, however, even though this sounds easier, sending them by snail mail will actually be much easier for me!

[Alicia-fuwari]

Hello :]

Well when i was first diagnosed with PCOS when i was about 14 i found it so hard talking about it, even to my mum.. i felt so traumatised by what was happening to me and i couldnt speak to anyone about anything, let alone pcos which caused me to get into that state. But over time (now im 16) and with some councelling iv over come that stage. Now i accept the excess hair on me (which is the biggest bother) even tho it is still a pain to prevent.
I can talk to my mum, sister and two best friends about it now and they still love me the same and support me when needed. I even mentiond it to guys before i meet them or just in general and they realise how hard it can be for me and some of them even embrace the things that pcos does. So its a real confidence boost talking about and helps put the symtoms in a more posotive light :)

Love,
Alicia xx

[katiebug]

I've only been able to fully tell a few of my friends, my best friend was great with it, and I also told my best guy friend, because when this first started I had multiple health problems, and he was helping me deal.

I find that it is easier to tell guys about some of this, because even though they are grossed out, they are almost never as grossed out as the girls.

as for the people who are not my good friends they all know it as a blood sugar problem, or that something is wrong "down there" I find that is you show some resistance to talking about it or make light of it people will for the most part leave you alone.

Is anyone else away at college and having a hard time telling their roommate? My roommate and I don't really get along and she really wants to know about my meds and its hard to change by her because of the hair. I would just tell her, but I know she will be completely grossed out, and will then tell her boyfriend all about it. If any one has advise I could sure use some
Thanks

[angelofdarkness]

I only told 3 of my friends..well, "friends" now..
we were on a school trip, and, i told them that i had PCOS, so i hardly ever have a period, if at all, they took it well,
apart from one, she's just an attention seeking *****, and she was like 'oooh i my periods are irregular too!', which..
i told her that if that was true, she should get checked out
but its not true, i know she has her period, but shes a compulsive liar, to fit in or be interesting
and it upset me, that she would lie about something like that, something which is about my health.

funnily enough, i've known for just over a year, and i forgot to tell my mother!
she followed my gynaegologist's prescription, but i went to the appointement on my own, had the scan on my own, was told on my own, read the results on my own, and i completely forgot to tell my mother!
ah well, she knows now..
and what does she do about it? - nothing..

it can be hard telling people, as we don't know how they'll react
i dont tell people, only if i have to..
i find it upsetting too, when girls at school, they complain about having periods, it's like "ugh, i hate having my period, its so annoying"
i'd like them, i want to be able to have kids!
they dont know what theyre dealing with..

i guess tis just a matter of trusting people with.

[aet]

Well, i just got my bloodwork back today, so i havent been diagnosed officially yet, but im almost positive i do have pcos because i have a lot of the symptoms and my sister has it as well.

I told most of my friends about it. They asked why i was gone from school this morning and i just told them i had to go to the hospital for blood tests. They asked why and i told them, and explained what pcos is and all that. It wasnt that difficult for me, but i have some really awesome friends. I also told my boyfriend and he has been there for me and is really concerned about all this.

But what does irk me is my friends or other girls complaining about having their periods. Im just thinking, at least you are NORMAL and know you can have kids and all this stuff, i would KILL to have normal periods just like everyone else and know that i will be able to get pregnant on my own without medication and all this other crap. I feel so out of place sometimes.