Telling my family about PCOS, suggestions anyone? a little long...

chanchan · 07-27-2005, 09:26 PM

This thread was inspired by the thread about about being embarassed to tell people about PCOS. I'm not embarassed to tell my close friends and my immediate family but I don't know what to do about my extended family.

Here's a little background so you can understand a bit about the dynamics at work: I'm kind of a black sheep in my family. My family is conservative, small town focused, very family oriented and never went to college. I'm very liberal, living in LA, single and went on to a very progressive college. If they knew the details about my job they would probably object but as it is, they just don't get the general concept of what I do. They can't relate to my life and don't show any interest in it. The conversations at family functions revolve around who is buying a house, who's pregnant and what all the kids are doing, I'm doing none of those things so I end up just sitting around. I basically feel more comfortable with my friends' families than with my own.

Also, the only person who does not have a weight issue in my family is my 15yr niece. Everyone else ranges from overweight to morbidly obese and some have diabetes. But this doesn't stop my family from making comments about each other's weight behind their backs. My Aunt actually quoted a comedian's fat girl joke and laughed as if she didn't realize the joke was at her expense. I have a young cousin who is slightly over weight and I just know she has PCOS but I'm not close enough to her to talk to her or her mom about it. I don't want to come across as singling her out because she is heavier but more because PCOS is genetic.

So after being relatively silent for many years, I'm struggling on whether or not I even bring it up my new found PCOS info to my extended family. I have a feeling they will not be supportive. I can imagine a number of scenarios: they simply won't get it and suddenly my weight will become an open topic of discussion and critism, they will blow it off, or I will suddenly get the marriage pressure since my time to have a baby is "running out". But the worst of it is this: I have a strong suspicion that I will respond well to Met and be able to lose weight (since I did when I frist went on BCP )and this will cause my family to become bitter towards me. I can hear them saying things like "well sure you can lose weight if you are taking diet pills but it will all come back on and you'll be heavier after you stop those pills". So I am just torn. I have hated going to family functions for a long time and considered telling my mom that I won't go anymore. But now, I feel like I really need to let them know for my cousin's sake.

So basically, how do you take one for the team without causing a legacy of misery in the process?

omcv · 07-27-2005, 09:41 PM

First of all Met is not a diet pill! It is so you do not become so bad you have to go on insulin. A side effect of Met is that you lose weight, some do and some don't. I feel for you that your family is so disilusioned with the weight issue. We all need support and bickering behind each others back will not help. It might be that telling them you have PCOS will help some of them get checked out. Maybe they have never shared their possible symptoms before and are privately greiving for some kind of miracle in there lives. What is the saying, 'Misery Loves Company'. I would write a letter to see how everyone is doing and then on a side note state that the doctor has dx you with PCOS, a very serious and potently life threating disease. Of which it is. That you wanted to share it with them to get their support. You are in the struggle for your life you need all the support you can get!

I have to take care of my DD right nopw but I will be back to check on you and keep you in my prayers!

chanchan · 07-27-2005, 09:53 PM

Point of Clarity: I realize that Met is not a diet drug but thank you for pointing out the hole in my story. I just meant that I can imagine my family not knowing the facts and saying something like that to me. They tend to jump to conclusions without all the info. The reason I said I was hopeful about losing weight on Met was that my body dropped 70lbs within a year of being on BCP. My body seems to respond well when my hormones are balanced so I'm crossing my fingers.

I do like your idea about writing a letter, I'll definitely consider it. Thanks!

hormonalwv · 07-27-2005, 10:07 PM

I sent out an email to my family. Granted, I don't have the sort of family issues that you do, but It was just an easy way to cover all the bases. I included several links to sites that did a better job of explaining PCOS after I tried to in the email. As expected, some were ( and still are) incredibly supportive, and some didn't even bother to respond--about what I expected.

Than again, you could, as you said, just not bother telling them. You already know it's going to be an issue on many levels, so you might just refrain from spreading the info. Maybe when your cousin in a bit older, you can talk to her directly about PCOS.

Good luck with your decision and good luck with the met...it's helping me!

chanchan · 07-28-2005, 05:35 PM

The email sounds like a good idea as well. I am pretty sure most of my family members have an email address. One other aspect I just realized is that my emotional threshold varies almost by the hour. (Yeah, I'm a mood swing cyster as well, LOL!) Sometimes I can talk freely about it and not be emotional, other times I simply think of one aspect and my eyes well up with tears. If I send out an email or write a letter, the next time I see them I might not be emotionally able to deal with questions or comments even if they are suprising supportive.

One thing I thought about was that I could always try to pull my aunt and my cousins' wives aside and letting them know about my diagnosis and that the men in our family are probably carriers. They all have daughters and then it just seems like an awareness thing about their children and it not only takes the focus off of my issues but it also doesn't sound like I am singling out my cousin because of her weight. My family functions are usually everyone in one room together so pulling aside more than one person can be tricking, especially with this nosey bunch.

Here's some more background about why it is important to me that my cousin is screened: I have basically been overweight since I was about 3 or 4 years old. Since my cousin was very little, she too was a bit bigger than the other kids and everyone in my family makes comparisons to how both my cousin and I look like an aunt of ours who is estranged from the family. Every get together, my family says how much my cousin and I are alike and then they make my cousin and my niece stand back to back to see who is taller. This was all fine and good until the last family get together when everyone was going off about how pretty my niece is becoming. After my cousin left, they said that she would be really cute if she was just a little thinner. I know that I am taking this personally but I couldn't help but think that they think the same thing about me, especially since the comparsion between us has been constant. So now, I feel like I have to make sure my cousin is screened because I don't want her to go through her teens and twenties the way I did, blaming myself for not being able to lose weight.

KatCarney · 07-28-2005, 06:13 PM

Aside from your cousin, I'm unclear as to why you feel compelled to discuss your diagnosis to the extended family (especially since you're not close.)

JuliannePCOS · 07-28-2005, 06:15 PM

I never thought that I really *had* to tell my family. I guess I don't think of my PCOS as a disease -- just sort of as an annoyance.

When I am taking the Clomid, if they ask I tell them it's to help me ovulate because for some reason I don't always ovulate. They seem satisfied with that.

Edited to add: So... what Kat just said.

PeacefulAngel · 07-28-2005, 07:14 PM

I've never really explained to my extended family either. Just my mom and dad and my In-laws, because I'm close to them.

I understand about wanting to talk to your cousin. Maybe you could just get her or her mom aside. Explain the seriousness of this syndrome, and tell her you are talking to her out of care and worry. Any chance you could email your cousin? Or would that be too weird? I'm just pondering....lol.

As for the rest of your family....I can say this with a heart full of feelings. You seem like a very strong, independant woman. You do NOT need anyone who will be unsupportive or critical in your life. If you feel these people will make fun of you, or hurt you in any way, don't tell them. You don't deserve that.

Hugs
Julie

chanchan · 07-28-2005, 09:19 PM

First of all, thanks for all the support and well wishes. I really appreciate it.

For Kat and Julianne - From the research I have read and what I have observed in my family, it looks like we all have some sort of insulin resistance running through our genes. So far, I'm the only one that has had it manifest in my body as PCOS. I guess I am assuming that since the info I have on PCOS and insulin resistance has put the puzzle pieces together for me, it might help them find ways to be healthier as well. Even though I'm not close to them, its hard to think that I might know some info that could potentially help them and not share it.

KatCarney · 07-28-2005, 09:39 PM

It's a tough call.

You mentioned that the majority of your family is overweight to obese, and some have diabetes, so at least some of them are already under the care of an endo (I would assume.)

Personally, I would go ahead with your treatment, and lose your weight and get fit and healthy FIRST. Those family members interested in 'getting healthy' will approach YOU - that's what happened to me. When they ask how you lost the weight, don't say, "because I went on Met" (as that 'does' imply that the Met is reponsible for your weight loss.)

I would say, "The most important key to my weight loss was finding out that I had an endocrine disorder called Stein-Leventhal Syndrome. There is a lot of research that shows that it is genetic. Prior to my diagnosis, I would struggle with x, y, z, and now [my health is better], [i lost weight], etc. It's worth asking your doctor about getting tested, or if you like, I can email you some information."

I wouldn't point out that you can SEE that they have any of the symptoms, as this sometimes makes people feel uncomfortable. Make it easier and less confrontational for the family member to RELATE to what you're saying, rather than having to be 'confronted' with symptoms that they may be uncomfortable talking about.

Just my suggestion...

chanchan · 07-28-2005, 10:16 PM

that's a great suggestion Kat! I know it will take a good deal of time to make a significant difference with my weight loss goals. By the time that anyone could notice, I'll probably be more at ease with talking about it and I won't be as emotionally raw as I have been the past few months. Even better!

Oh and don't worry - I was never planning to point out what I see in my family as symptoms of insulin resistance. I would never want someone to do that to me.

You know what, I don't think any of the people in my family who are diabetic are seeing an endo. I know for sure that my mom isn't!

KatCarney · 07-28-2005, 11:06 PM

Sounds like a plan!

BTW, re: your teen niece, you can read up on teens and PCOS by going to the RESEARCH ARTICLES FORUM and search on: adolescent

chanchan · 07-29-2005, 02:28 PM

Thanks for the tip Kat! The last time we chatted, my sister told me she was starting to have some symptoms as well and I sent her the link about siblings sharing the same gene defect. I plan to send her all the info I can find about daughters of PCOS women and talk to my niece as well.

I really do feel alot better about this whole situation. Thanks to all of you for your suggestions and support. I love my cysters!!!