The one where I get bitchy

This is going to be a long one. I apologize in advance for the brain-dump, but I need to get this out.

January 25, 2011. Four days after Grey and I officially began our infertility workup, we attended the first class for Ali Domar's mind/body program. I have some great things to say about Dr. Domar's work with the mind/body connection and infertility. I also have a lot of good things to say about Carol Knoph, the instructor for this class in the Seattle area. Certainly a topic I want to cover more in a future post.

What was interesting about this group for me was it was the first group of women I was finding in real life who were also struggling with infertility. Though nervous, I was also at ease with the idea of being around others who "got it," who understood what it meant to live with the grief and pain of this horrible disease and how isolating it is. I fully expected that this group would be a source of support. Little did I know how wrong I was.

Before I go any further, I need to point out that I don't have anything against group therapy. With the right leadership and appropriate rules, it can be a wonderful experience and RESOLVE runs many fantastic support groups. The thing is though, every group NEEDS someone to mediate. It needs to adhere to established ground rules and goals. Because without those, it's easy for one person to take over, absorbing all the energy in the room and making it a venue for them to air all their BS without actually dealing with it. And once that happens, it's all downhill from there.

Our group leech was a woman named Angie. Angie and her husband were trying to conceive for 2 yrs with no success, other than a suspected chemical pregnancy. Angie had PCOS. Angie also had a host of emotional issues and could easily spend the entire 2 hrs talking about every woe in her life from the time she was born. Angie was also the first person I met to undergo IVF. Like everyone else, I was supportive. I was very happy for her when we learned about her BFP and then the news of twins. But where things started to go south was after the course ended and we started meeting independent of Carol. It quickly became clear that she lacked empathy for others in the group and with a lack of leadership, those sessions turned into Angie therapy session. Instead of focus on mind/body, the attention shifted to how miserable she was as a person. She would complain obsessively about pregnancy symptoms despite the fact that another group member was grieving a failed cycle. When called out on how hurtful she was being, she immediately pulled the "but I'm infertile too" line and threaten to banish herself in hopes of more support. The final straw for me was hearing about her rubbing her very pregnant belly and whining about having to support 2 babies at a meeting while a another member, Beth, was going through a miscarriage. Needless to say, I stopped attending group meetings immediately.

Angie wasn't my only example of an infertile with amnesia. Before, during and after Beth's failed cycle, I spent a lot of time supporting her. I cheered for her with the news of the BFP, prayed like crazy when the betas weren't climbing and spent a lot of time being available for her to vent. I even knitted her a pair of fertility socks for her pending January FET. All this during the time that my IUI cycles failed and my family was cut off. In November, I received a "surprise" pregnancy announcement from her, stating that she had undergone a FET and didn't tell anyone. At the time, I swallowed my shock and pain, determined to be happy for her and reasoning that she needed to do what was best for her and her husband. Still, being blindsided hurt. When I learned my first IVF cycle was ending in miscarriage, I contacted the other members of the group hoping for support as I was reeling from the news. Though a couple emailed me back, insisting that I attend that evenings meeting so they could offer support, in general the rest were silent. Then I got an email from Beth.

I'm so sorry!  This whole thing is so hard.  I know that talking to XX was helpful for me.  (She is a counselor who specializes in fertility struggles.)  Take all the time you need to mourn and heal.

I do have to say that the FET cycle is SOOOO much easier than an IVF cycle.  There are not nearly as many drugs, so it is just a much easier process.  You can time things out to accommodate your schedule. I know that seems far away at the moment, but it may give you some hope in this difficult time.  

Needless to say, I cried after getting this email. I felt so belittled and betrayed with the response about me losing my pregnancy. It felt like it didn't matter.

I need to reiterate what I said in my previous post: I am not a fan of the pain olympics nor of people one upping one another. I also don't believe that support should be less for someone if they are able to become pregnant nor should they be attacked. We're a community, damnit. We should be supporting one another through the good times as well as the bad.

But I do believe that if you walk this road for any amount of time, you have a duty to remember those who are in the trenches. I'm not suggesting that you become a champion for every person suffering from pregnancy loss and infertility, but if you were supported by others, be they here or online, you owe it to them to reciprocate that support.

Mel once asked if it is appropriate to hold an ALIer responsible for insensitive comments or actions. Honestly, I do. I get that there are days where we'll make mistakes and say/do something that is completely insensitive (hell, I do it all the time), but I also believe that to develop amnesia is to have a double-standard and selfish. To say or do something that would have been incredibly painful for you and then become defensive about your actions makes me see red.

Following my second miscarriage in April, I wanted to die. There were many days following the news where I prayed I wouldn't wake up to this hell. I felt so betrayed by my body, the universe and the world in general. Looking back now, I see how dire the situation was and am completely amazed that neither Grey or I lost our minds. What added to the hurt was being isolated. So few reached out to us, assuming instead that giving us space was the best course of action. Even as it became clear it wasn't. The ones who did reach out were those I've met through this community, with posts, emails, comments, texts and socks keeping both Grey and I afloat. For that I am eternally grateful.

The few resolving IFers I knew in real life pulled away, leaving us alone during our darkest hour.

What's sparking all of this is a letter that I received letter from one of these IFers. An apology of sorts. And I'll be honest, I don't know what to do. I understand she's trying to reach out, trying to figure out a way to be supportive now. But with that letter came the memories of April. All the pain, the fear and the hollowness. The memory of death. But most importantly came the anger for feeling abandoned. For feeling like I was used, with my only purpose serving as a cheerleader but that my pain didn't matter. And as much as I don't want to be the bitter infertile, it's hard to look at the enclosed birth announcement and not think "why did my babies have to die?"

Tonight I'm hurting. I'm hurting because I don't want to be this way. I'm hurting because of the guilt I'm feeling. I'm hurting because of the raw emotions that have emerged.

I'm hurting because I know now that I deserved better.

I don't wish any of these women to still be in the trenches instead of holding their children. Nor do I think any of them are less deserving, despite the fact that I think one of them has some serious emotional problems. But I do expect that they would know how fucking important it is to reach back, to offer support and to be aware that isolation and platitudes are the worst response to anyone who is grieving. To not become what was such a source of pain.