Creating support

The blogosphere has been quiet lately. Have you noticed the lull? It happens every now again, people just stop writing and commenting and things get quiet. In the past a quiet blogosphere frustrated me but now I have more patience for it. It’s just the inevitable period of yin that complements the yang. It is necessary.

And now on to our regularly scheduled program.

Infertility is isolating. Secondary infertility can seem even more so because you really don’t fit in anywhere: not with people who don’t have kids, not with most people who do have kids, not even with most other infertiles. You are, for all intents and purposes, alone.

The isolation is really difficult. It may be one of the most challenge aspects of this experience.

I am lucky in that I do have some amazing support in my life. My parter loves me and is incredibly caring. My best friend is amazing. She is like the best and most unexpected gift in my life. She has been through infertility and understands what I’m going through; she is knowledgeable on the subject and is an incredible sounding board. My mother has also been a pilar of strength, acknowledging how hard this is and propping me up when I need it most. Truly, between the three of them, I feel supported. But I would love to meet–face to face–other women who are struggling with the same things, trying to decide whether to build their families in different ways than they had ever dreamed or to just walk away. I’d love the support and camaraderie of other women who are going through this right now. I’d love to know how they are handling it. How they are making the impossible decisions. How they know what to do.

Many books I read suggest joining a support group, but those same books recommend it be a group that is specifically geared toward secondary infertility, as women enduring primary infertility have a hard time supporting women who already have a child.

Long ago I checked RESOLVE’s Northern California groups page and was disappointed (and frankly a little surprised) to see that there were no peer-led (read: free) general fertility groups in the area, let alone secondary infertility groups. There was one professional group (that, as far as I could tell, cost $350 for six one hour sessions) but they meet on Tuesdays from 10:30am to noon. I guess the assumption is that women dealing with secondary infertility are stay at home moms? All I know is I can’t go to that meeting until maybe this summer. That is four months away.

So I started to think, maybe I should start a peer led group for secondary infertility in San Francisco. Meetings are generally just once or twice a month. If I could find an available space, why not give it a go?

And then the fear reared its ugly head. And the doubt. I started to wonder, am I really the right person to lead a group like this? What do I have to bring to the conversation? Can I effectively facilitate an emotionally charged meeting with women I’ve never met? Will they feel confortable with me, knowing that I’ve only been trying for a little over a year and never plan on pursuing IVF? Am I secondary infertile enough?

The thing is, I know I’m infertile. This is not me harping on “credentials” again. If my 12 months TTC weren’t proof enough, our dismal diagnoses and hopeless prognosis certainly is. But being at the beginning of a journey, no matter how certain you are of its outcome, is different than being two or three or four years in.

I’m not the only one who recognizes that difference. Recently I saw a request through the ggmg boards for an infertility sufferer to participate on a forum but I did not fit the requirements. They wanted someone deep in their infertility journey, preferably either resolved or resolving. There were many possible paths someone the participant could have taken (treatments, donor eggs/sperm/embryo, adoption, etc.) but they had to have traveled those paths, they couldn’t be just recently embarking on them.

I understand the reasoning for that. When including a voice you want that voice to be the most relevant and someone who has struggled for longer, and harder, is the most relevant; more people can relate to that person than to someone else with a shorter, more specific situation. I worry that my newbie status as an infertile will make me an ineffective leader of a group like this.

I’m sure there are lots of other fears: What if no one comes? What if I start the group and then it’s too difficult to maintain it? What I start it and it’s successful and I don’t feel it helps?

There is so much uncertainty. In the end I guess I’m just not sure it is worth it. I want support. I want community, but if it isn’t readily available, am I willing to try to create it? I’m just not sure.

I emailed RESOLVE and asked them for more information on starting a group. Their website assures that there is a process for researching all of this and by the end of that process it will be clear whether I am comfortable starting a new group. I am going to have faith that is the case and hope for the best.

Have you ever participated in a peer-led infertility support group? Was it a positive experience? Would you ever consider leading one yourself? Why or why not? Do you think you’d be reluctant to attend a meeting led by someone who was just starting on her infertility journey?

8 responses

  1. I never attended a support group for IF. I would have if I’d known of one though. I at least would have given it a try.

    A year of trying and having a diagnosis is not, in my opinion, just starting on the IF journey. The leader of the group doesn’t need to be terribly seasoned. You’d just need to be good at coming prepared with discussion topics that you could kick off if no one pipes up right away. You would need to be a good listener. You wouldn’t need to be “super infertile.”. That’s what I think, anyway!

    If you want to do it, you should!

  2. Maybe by starting one, a potential co-leader might pop up who’s at a different stage in her journey that could balance out the areas in the fertility journey you haven’t experienced? I have thought many times about starting one of the peer groups for Faces of Loss Faces of Hope or a Resolve Adoption peer group in my area, but the idea of being solely responsible for it was too much. Maybe there’s someone like me lurking on the sidelines hoping someone like you will start one?!

  3. I think you would be a fantastic leader in a group like this. Maybe your advertising would bring in women who have been in this for years and those who have just been diagnosed, and hopefully everyone in between. It’s all about support, not how long you’ve been on the journey. I wish there had been something near me and if I wasn’t so insecure, I would have started something. Obviously why I started blogging and reading the forums. Your passion and your at home support network might put you miles ahead of someone else in your situation. I think it would be great for you to start it up. A place to focus your passion and get some support from people in the “trenches” as it were. GO FOR IT! Good luck!

  4. I’ve noticed that lull lately, and certainly been a part of it just feeling like I’m trying to keep my head above water these days. It’s interesting to notice the ebb and flow of an online community per se. Anyway, really hoping you find or start a group – perhaps try to keep it low key or small at first, so you can truly participate as a member and not be consumed by the idea of “moderating”. I’ve often considered starting a low-fee therapy group for women or couples facing IF related challenges but where’s the time? 😦 Some day maybe… (also ill keep an ear out for these kinds of groups for you, since fliers and emails promoting them make their rounds through the therapy community)

  5. Thank you for writing this–I agree that this process can be so lonely. I’m happy to have blogging folks to talk things through with, but really wish that I also had people who I knew in person. I would totally come to a group like this if I wasn’t on the other side of the country. And I imagine most folks who came wouldn’t care about your particular IF credentials; they’d just want a place to share their own stories with people who might “get it” in a way that so many folks around us do not.

  6. I was in a support group of sorts when I was trying for J. We had a peer leader as well as a therapist. Our peer leader had been through a lot, if anything she was nearing the end of her IF journey. And yes, she was a good resource. But what happened was that most of us in the group got pregnant, and she was still struggling. And that was hard – how could she be our leader, when we were pregnant and she wasn’t? So in that sense there’s an advantage to having someone a little earlier in the journey. At any rate, I think in this situation the main thing you’d need is good organizational skills and the commitment to schedule gatherings regularly. I hope you’re able to get something started.

  7. In the interest of full disclosure I’m not sure I’m infertile. I can get knocked up fairly easy. I just can’t bring home a live baby. I don’t know where that puts me.
    If it means I’m infertile it would be secondary for me as well, as I had G with zero issues or complications.
    Despite not knowing where I stand in this forum, I would jump at the chance of any support group that had anything to do with ‘I want a kid and seem to have trouble accomplishing that’.
    Unfortunately due to our middle of nowhereness there is only a generalized grief group available and I do not feel comfortable enough to attend that.
    So I say go for it.

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