Re: Noticing Other Women With PCOS...I did it!
From: Rochelle (anonymous@obgyn.net)
Mon, 28 Jan 2002 16:50:12 -0600 (CST)
Chris,
I am so glad you talked to that woman. And I bet she's glad you did
too! Anything done out of kindness usually ends well, and it sounds like
you were brimming with kindness. Let us know how it continues with her.
--
Rochelle
At Mon, 28 Jan 2002, Chris wrote:
>
>Hi-
>
>I was amazed to read Dona and Renees messages this morning...I finally
>talked to the lady I had mentioned about PCOS, and I brought it up in
>the exact way you both told me about, although I hadn't read your
>messages before! I bought some lotion for my face at the store where she
>works, and I stopped at her counter on my way out (which I usually do.)
>We chatted for awhile, and I held up my little bag and told her how
>excited I was that I actually had to buy lotion for my face, and went on
>to tell her about how I was so broken out, but I started on this
>medicine and my face has really cleared up. I was going to just leave
>it at that, but she started DRILLING me with questions!!! I just
>answered her questions, trying hard not to go into too much detail
>without her asking, and just like you guys said, I really kept it all
>about me and told her about my experiences. Not one time did her
>appearance ever come up in the conversation. I told her that I am not
>an expert, but I knew about a couple of good websites, but she said she
>doesn't have a computer and so I told her if she was interested I could
>bring her some info...she got so excited, thanked me a million times,
>and said that would be great! I walked calmly out of the store, but once
>I hit the parking lot and knew she couldn't see me I literally skipped
>to my car! I could not be happier! I remember the amazing feeling I had
>when I discovered there was such a thing as PCOS and I could finally put
>a name on what I was experiencing...just knowing PCOS existed, and that
>I was not some freak of nature gave me such a great feeling of
>excitement and hope, long before I ever even got treatment. I am so
>happy that maybe this wonderful lady is feeling that same kind of hope
>and anticipation right now! Thanks all of you so much!
>
>Love, Christina
>
>At Sun, 27 Jan 2002, Renee wrote:
>>
>>I do the same thing.
>>
>>For me, it usually comes up in context of food, since I am so carb restricted.
>>
>>Renee
>>
>>Dona wrote:
>>>
>>> Hi Chris,
>>> That was a well thought out and well written responce! Thank you.
>>> One thing that I have done over the past 3 years of dealing with this is
>>> talk about it as MY health problem. I have informed many woman about
>>> PCOS just by saying that it is something I am going through.Of course it
>>> is usually with people I already know or aquaintances.I would find it
>>> very difficult to walk up to a total stranger and say.."gee I think you
>>> should see a doctor..you look like you might have a health problem".The
>>> last person I had told PCOS about to was my hairdresser.She had noticed
>>> that my skin was looking better and wanted to know what I was doing for
>>> it...right there was a perfect opertunity to say...well I have PCOS and
>>> the medication I am taking for it has helped with the excess
>>> hair,acne,and weight.The rest of my appointment with her was talking
>>> about PCOS and she is going to ask her Doctor about the possibuility of
>>> it (She had never heard of it before!).It takes the right timing and
>>> oppertunity to talk about this with other woman as not to offend
>>> anyone..and usually if you present it as something you have been
>>> struggling with...it might just open someones yes that they may have
>>> this problem too.Just my 2-cents worth.
>>> Dona =)
>>>
>>> >At Sat, 26 Jan 2002, Chris wrote:
>>> >Yikes!
>>> >
>>> >I haven't checked the board in awhile and was surprised by the response
>>> >to this post! Thanks to all who replied with opinions and ideas...
>>> >
>>> >I am a very compassionate person and would never dream of randomly
>>> >selecting a person to whom I could announce that their thinning hair is
>>> >very noticable. I have been coming to thie board for a long time, and I
>>> >have not seen many people here who aren't kind people interested in
>>> >learning about themselves and sharing what they know with others. For
>>> >some reason, I feel that I need to defend or explain myself, but I am
>>> >not sure what for. I simply asked for others to voice their opinions on
>>> >this. Most of the responses I read were great, even (and maybe even
>>> >especially) from those that think my involvement with this woman's
>>> >health issues is inappropriate. I really appreciate hearing your
>>> >thoughts on this! I obviously unsure of the appropriate action in this
>>> >situation, which is precisely why I posted this question. I
>>> >particularly appreciate the poster (I am sorry I can't remember her
>>> >name!) who pointed out that if I am having trepidation about this, it
>>> >may not be the right thing to do. You are right! But I thought "anon's"
>>> >post was counter-productive, and really felt saddened by some of the
>>> >comments in it, as well as its general tone. "Anon" is apparently
>>> >concerned about me being unkind and disrespectful to this woman, but is
>>> >in turn being unkind and disrespectful to me, which seems a little
>>> >hypocritical. I really feel strongly that I need to respond...this is a
>>> >long post, so feel free to hit your back button now! :)
>>> >
>>> >"You aren't a specialist,and you are not in any postition to selectively
>>> >chose someone and inform them that they may have this syndrome."
>>> >
>>> >I am absolutely not a doctor, and have no way of knowing whether this
>>> >woman has PCOS or not. However, I feel that my own experience with PCOS
>>> >has prompted me to do more research and studying of it than the general
>>> >public, and I do feel confident that I have a better handle of the
>>> >symptoms, physiology, and treatment of PCOS than many people. I feel
>>> >totally comfortable sharing what I know, and also feel totally
>>> >comfortable letting others know when I am unsure about facts. At least
>>> >five doctors misdiagnosed me for years, and it was the "non-specialist"
>>> >women on this board who finally led me to asking for the right tests and
>>> >supplementing my doctors' information, proving to me that being a
>>> >"specialist" isn't necessarily a prerequisite for giving good advice.
>>> >
>>> >>"Just because this woman has thinning hair and is obese and some excess
>>> >>hair,does not mean that she has the syndrome.
>>> >>Possibly ,she can have some thyroid abnormality,she can have another
>>> >>illness."
>>> >
>>> >You are absolutely correct! However, PCOS does cause thinning hair,
>>> >acne, weight problems, and hirsutism in many women because of androgen
>>> >excess and insulin irregularities. I do not think I am off base for
>>> >supposing that a woman who has many of the symptoms of an often
>>> >overlooked syndrome may, in fact, have that syndrome. There is
>>> >certainly reasonable cause for question in this woman's case.
>>> >
>>> >>"So she has some pitting on her face.???//So do alot of people!"
>>> >
>>> >A lot of people do have pitting from acne. However, recent research
>>> >shows that the vast majority of adult women with persistant acne have
>>> >underlying androgen abnormalities (often PCOS.) I am happy to provide
>>> >links to abstracts of these studies at Medline. Just e-mail me or post!
>>> >
>>> >>"This is getting to be ridiculous.
>>> >>Some women now are going to go to shopping malls and pick and chose whom
>>> >>to diagnose?Half of the women in my town are obese and have thinning
>>> >>hair-do I assume that all have this syndrome?"
>>> >
>>> >I am sorry you feel this is ridiculous. This board is a place for
>>> >people to exchange ideas. If you do not feel a post is worthy of your
>>> >reply, maybe you could refrain from replying. I am not sure what part
>>> >of my message led you to believe I was going to shopping malls to
>>> >diagnose women with PCOS. If you would re-read my original post, you
>>> >will find that I happened to see a woman who had many of the symptoms of
>>> >PCOS pretty severely. Naturally, I don't think that qualifies as
>>> >scouting out women at malls to diagnose. As for the half of the women
>>> >in your town, certainly carrying extra weight and having thinning hair
>>> >is not always due to PCOS, or any medical condition for that matter.
>>> >Some women have thinner hair than others due to genetics, and some women
>>> >overeat and put on weight. However, I would suspect that some of the
>>> >obese women with thinning hair you refer to may very well have PCOS or
>>> >another medical condition. Significant hair loss in females is not
>>> >common and can be a sign of several different illnesses, and should
>>> >therefore always be checked out by a doctor. And as many of us know,
>>> >there can be underlying disorders which make it very difficult for some
>>> >women to lose weight. Again, as with women who have significantly
>>> >thinning hair, truly obese women should be concerned about their health
>>> >and seek professional help if they feel it could benefit them...not only
>>> >to look for a possible medical cause of the obesity, but also because of
>>> >the long-term health risks associated with obesity.
>>> >>
>>> >>"I would say,'keep your nose out of it'.
>>> >>If it were a friend or a collegue,then by all means,it wouldn't hurt to
>>> >>suggest the disorder,but we cannot go around and misinform people."
>>> >
>>> >I appreciate your opinion, but really wish it could be presented in a
>>> >more positive way. She is not a friend, so I feel uncomfortable
>>> >suggesting the disorder in plain language. I do not think that feeling
>>> >compassion for a stranger and considering providing them with
>>> >information that may be helpful to them is "going around misinforming
>>> >people." Accurate information (i.e. PCOS can cause hair loss, acne,
>>> >obesity, and hirsutism) is not the same as misinformation.
>>> >>
>>> >>"I am certain that this woman has a doctor,and if she looks like the
>>> >>poster child for PCOS,then I am certain that her doctor is already
>>> >>looking at the causes."
>>> >
>>> >This is the most interesting part of this post. I can assume that A.)
>>> >You do not have PCOS, B.) You do not visit this board often, or C.) All
>>> >of the above. Nearly ALL of the women I know with PCOS, and most women
>>> >with PCOS who I have met online, have had to jump through tremendous
>>> >hoops in order to get an accurate diagnosis of PCOS. Often diagnosis
>>> >takes years of visits to many different doctors. Blindly assuming that
>>> >any doctor will take charge of your own health for you is one of the
>>> >most dangerous things you can do. If I had used this logic when I was
>>> >told I was "infertile" by several different doctors, I would have never
>>> >had my daughter. Moreover, with the cost of healthcare in the US, I
>>> >think it is impractical to assume that everyone "has a doctor." This
>>> >woman in particular is a part-time employee at a department store, and
>>> >likely does not have health insurance as a benefit, which can be a
>>> >deterrent to seeking healthcare. And again, "having a doctor" does not
>>> >by any means insure all of your medical needs are being addressed!
>>> >
>>> >>"There is nothing worse that being told you have some syndrome.
>>> >>Women with hairloss,obesity,acne,hirtuism-have enough low self esteem.
>>> >>To start to go around and tell people that "you noticed that she has
>>> >>some hair loss",can be devestating.
>>> >>You should know better than that."
>>> >
>>> >I absolutely agree that having PCOS is awful! It has caused me a lot of
>>> >pain. I wish someone had informed me earlier that this syndrome existed
>>> >when I showed the symptoms. If you re-read my original post, you will
>>> >find that my question was not about whether I should "start to go around
>>> >and tell people I've noticed some hair loss." I am not sure who you mean
>>> >by "people" since my message concerned giving one woman information
>>> >about PCOS. I am also not really sure what you mean by saying that I
>>> >"should know better than that." As stated above, my post made no
>>> >reference to going on a campaign to inform all women with thin hair of
>>> >their appearance, so I do not know what I "should know better than."
>>> >
>>> >>"To leave a mysterious print-out on her desk is obsurd.This can cause
>>> >>alot of conflict in the office.It is like getting a note saying you have
>>> >>body odour in a nice way."
>>> >
>>> >Yes, I agree this could cause conflict. Actually, again, if you would
>>> >re-read my post, I stated that I was concerned about that fact. As far
>>> >as the body odor, I certainly hope someone would be kind enough to
>>> >gently let me know if I was smelly instead of just suffering in silence
>>> >when around me! ;)
>>> >>
>>> >>"I found this message very disturbing-as when I had cancer,the last thing
>>> >>I wanted people to ask me about,was my hairloss.
>>> >>Just leave her be please!"
>>> >
>>> >I am truly sorry to hear about your cancer and the effects of the chemo.
>>> >I have never been through that, but I really have sympathy. My sister
>>> >lost (almost) all of her hair during chemo several years ago. My mother
>>> >and I used to feel awful when people would give her a second look. But
>>> >she always said, "Hey, I am bald! People don't see a bald woman at the
>>> >mall everyday. Maybe their own sister or daughter is going through
>>> >chemo, or maybe they just want to make sure they aren't seeing things!"
>>> >She always said that she would rather someone do a double-take and smile
>>> >warmly and kindly than avert their eyes as they pass her as if she were
>>> >so hideous that they'd turn to stone if they looked directly at her.
>>> >People can see each other's bodies and faces, even though sometimes they
>>> >pretend like they can't. And sometimes, things we notice about other
>>> >people's physical appearance can be a sign hat something is wrong. This
>>> >rambling post is meant to let you know that my intention is to help this
>>> >woman, not hurt her. This is a forum for sharing ideas and opinions,
>>> >and I really do appreciate every one of your opinions. But opinions are
>>> >*very* different than judgements, and I hope "anon" will consider this
>>> >before posting again. I also always find it interesting when someone
>>> >posts a message so passionately and assertively, with their name as
>>> >"anonymous." If you feel so strongly that you are right and correct, why
>>> >not attach your name? My guess is that "anon" may have had a feeling she
>>> >would feel a little ashamed by having her name attached to such a
>>> >message. But, "anon", I hope you post as yourself soon! I really do
>>> >respect your opinion! I just think it may bear a little more weight if
>>> >presented in a less offensive tone.
>>> >
>>> >If you made it all the way through this, all I can say is "WOW!" Thanks
>>> >for your time and for allowing me to respond! Again, I appreciate all of
>>> >the input...it has definitely given me a lot to think about!
>>> >
>>> >Love, Chris
>>>
>>--
>>Renee Cordrey, MSPT, MPH, CWS
>>
>>---
>>
>>Don't follow in the footsteps of the masters. Seek what they sought.
>> --Zen saying
>>
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