The one thing you aren't doing

I've been a little pissed lately. Actually, this issue has been bothering me since I was diagnosed with PCOS. I actually don't write much about my PCOS, because other than taking Metformin, I haven't treated it as an issue separate from my infertility. But, you'll see where this is going.

To start, the problem with PCOS is that it is a moving target. It is different for every patient and it can change over time. For example, my sister and I both have PCOS. Of the many, many symptoms that can exist with PCOS, she had some of the worst ones: cystic ovaries, irregular periods, hair growth, weight gain, thinning hair, hormone imbalance, and more. For me, my symptoms are much fewer: mainly non-existent periods, cystic ovaries, elevated LH, and very minor acne/hairs on my chin. However, I tend to do very PCOSy things in treatment - like develop huge amounts of follicles and cysts after injectables. (As of this morning, I have 14 follicles on my right and 3 on my left, with several more days until trigger. That means I'll probably have a whole lot more than that. Holy shit. It feels like I'm carrying around a grapefruit on that side.)

Because of the wide spectrum of symptoms, PCOS can be widely misunderstood and difficult to treat. The tension always exists with PCOS - do you treat the symptoms, or try to get at the underlying (unknown) issues that cause it? My sister has spent decades researching this crap. Workshops, conferences, books, doctors, message boards - she's done it all. I've done a bit too, and I have to tell you, I'm frustrated. Every single source I read adds more layers of confusion for me. It gets even worse when you compare Eastern Medicine and Western medicine's different perspectives on the subject. Then, try adding in all the supposed "cures" for infertility in general, and you've got a real clusterfuck. I won't bore you with the list...we all know how many different dietary, supplement, and treatment recommendations that exist out there. But lately, I am getting way more heated on this issue.

I have been reading a lot on Twitter, fertility boards, blogs, and the news about how everything I am doing or not doing is the thing that's holding me back from getting pregnant. Whether it is eating organically, being a vegetarian, cutting dairy (or soy, or gluten, or red meat) or eating more of it, taking fish oil, not taking fish oil, losing weight, gaining weight, loading on antioxidants, eliminating caffeine, or indulging in modest amounts of caffeine, apparently it is my fault I'm not pregnant. My gut reaction is to get angry - angry at the fact that I can't seem to find the magic bullet that is keeping me from getting pregnant. Then, my anger turns to self-hatred and disgust when I read about women successfully making some of these very dramatic changes, ending up with babies. How do I know which one? Do I do all of them and never eat a comfort food again? Do I force KG to make these changes too?

Is it just me? Does everyone find these recommendations completely overwhelming?

The hardest recommendation for me though continues to be, "Have a positive attitude."

Mo summed up my own feelings on this beautifully: 
How did I not come up with this on my own? Of course! That’s the magic solution! Think positive thoughts! I’m sure all of the crap that has happened to me is entirely my fault because I didn’t think positively!
Don’t you all just love that little gem of advice? Useless and guilt-inducing all at once! It’s the whole package.

As I near the end of this IVF cycle, I don't know what I'll do if it fails. I feel really lost when I think about it. So for now, I guess I'll try to follow Mo's lead again:

Attempting to “think positively” and the inevitable failure of that attempt will only lead to wallowing and guilt.
So I either think negatively or I don’t think. Period.
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Appropriately, Lost? by Coldplay played on my iPod this morning. This version is gorgeous.

Hiding in Plain Sight Revisited - NIAW

National Infertility Awareness Week is coming up and it has been on my mind a lot. NIAW is an opportunity to do exactly what I want most: to help educate those who don't understand the experience of infertility, and to support other women who know that experience all too well. I am feeling more and more of a call to get involved with IF advocacy and I have made some small steps in that direction lately. (More on this in coming weeks.)

Then there is the but...

But, this would require me to be more public with my infertility. Between reading Keiko's posts on the subject, some soul searching, and several conversations with KG, I am feeling some urgency to finally be 100% "out" with my infertile status. A while back, I wrote a BlogHer post on this topic, and it is once again in the forefront of my mind. However, this time it isn't my blog that I am thinking of publicizing. I am considering coming out on BookFace.

I have been right on the precipice of doing this for quite some time. I would say I am 90/10 out.

Even though I still blog anonymously, almost all of my friends (at least the close ones) and my immediate family know I am in IF treatment and many read this blog. I also told my boss and a few select co-workers (most of whom are IFers as well.) Little by little, I have been honest with more and more people. I even came out to a few friends of friends, because they were also IFers and I wanted to reach out. It's almost like I am trying to swim in the ocean. I started by dipping my toes in. Then I waded to my knees, then my thighs, then my waist. But I can't quite seem to dive into a wave.

This is the deal: I have not gotten to the point where I am comfortable having all my co-workers finding out. The biggest factor holding me back is that I am a teacher. One thing you should know about teachers is that they are chatty and love to gossip. I hope I'm not throwing my fellow teachers under the bus here, but if you have ever been in a teacher's lounge, you know how it goes. They also tend to let things slip to parents on occasion. I am not friends with any parents on FB, but you know the way the internet is: you have to be ready for everything to become public, even without your consent. You just have to own it. Am I really ready for the families or students at my school finding out? Not so much.

But maybe taking the risk is worth it. Maybe this would mean people at school would finally stop asking me that dreaded question: "So when are you going to have kids?"

Additionally, I have mixed feelings about personal information being put out there on social media. On one hand, I feel like people overshare. I don't need to know every single thought that every single person I knew from elementary school has. (Although I am probably a complete hypocrite because I also share inane musings pretty often.) However, no one can deny that social media is a powerful tool. It reaches a lot of people in an instant and can spark amazing social change. Think of the recent movements related to Trayvon Martin, Personhood legislation, and Rush Limbaugh's disgusting rant. The more people that show support for NIAW and RESOLVE on FB, Twitter, Pinterest, and Google+ the more it will become seen as a legitimate and respected cause.

So, the question is: is supporting NIAW publicly on my FB page, and acknowledging my place in the IF community in that forum, worth it? Does it do enough good to outweigh the risk? Should I do it but set the privacy on the post to exclude my coworkers? Is that wussing out?

While stuffing our faces with sushi last night (that's right - infertility has some perks) KG reminded me that being honest about our fertility issues is a powerful thing. Specifically, in the last several months, I have been chatting with one of those friends of friends that I mentioned above. Although we don't know each other very well, she confided in me about her own battle with IF. She chose not to tell anyone close to her about her journey, even her mother. But, because I was open with her about my experience, she decided to share. During one of our many conversations, she told me how much of a difference having my support makes for her. She said she feels so much better, because she feels less isolated. Less alone.

Sound familiar? Isn't this exactly what we all say about the blogging community? Isn't that why we are all here? What if we could all have that in a bigger arena, the way cancer survivors do?

Helping other IFers by sharing my experience makes me feel like I have purpose. I can only imagine that feeling with increase tenfold if I supported them in a more public way. I really want to do this, but as always, I am standing in my own way.

What would you do?