Saturday, February 7, 2015

Finding ways to advocate

Two weeks. It's hard to believe that it's been that long since I last wrote. So much is happening, both with work and family. All of it warrants an update. But that's not going to happen with this post.

Instead, I'm going to address something that I've been thinking about for longer than I care to admit. Because admitting this means that I have to admit why I haven't wanted to address what I'm about to talk about. How I've been worried about the backlash and hate that will very likely be filling my inbox. But I also know that I've gone far too long suppressing something that I believe ultimately is good and necessary. Not only for this community, but for the world in general. And recent posts and events that I haven't talked about (until now) have made this all the more clear.

So, here goes. Haters, feel free to vent below.

At the end of January, Pamela Tsigdinos @ Silent Sorority wrote three separate posts that basically transcribe this Bitter Infertiles podcast. For the record, this is still one of the podcasts that I am incredibly proud to have been a part of. Reading this transcript, though, was bittersweet. On the one hand, I remember doing this interview and knowing from the moment we began speaking with both Pamela and Loribeth what was being created would be important. I was so nervous speaking with our two guests, praying I would not say anything that would be considered offensive or stupid, but also because I had grown to respect both of them immensely for their courage to share their lives, their thoughts and their insights in a world that seems to value only the baby bump. A lot came out of that interview and I still think about Pamela and Loribeth's words even now, especially as I fight for a career in a world that is rapidly transitioning.

The bitter part of this, though, is knowing that this podcast no longer exists. Reading those transcripts opened a floodgate to emotions that have been kept at bay; emotions surrounding the sudden end to something that I believed in; was proud to be a part of.

Before people get the hackles up, please know I'm not blaming anyone for what happened. I played my part in the ending of this podcast and I understand that there were intentions for what played out. Yes, there were things about the podcast that needed improving. The one on a lot of people's minds was having all three hosts being pregnant at the exact same time. But what wasn't talked about was why Bitter Infertiles was unique. An ingenious idea, really. What wasn't talked about was WHY some of those podcasts are still being regularly downloaded and listened to. The fact that there are people outside of the blogging community who are accessing them and listening.

This brings me to the second part of my confession.

This past fall, in the midst of job hunting, I decided it was time to start looking into ways that I could use my graduate training and science education experience to help those facing infertility. I remembered all too well what it felt like to walk into the waiting room for my RE for the first time. To get those initial results and undergo that first round of testing. I also knew that Grey and I had an advantage most don't have, making many a physician uncomfortable when it became clear that we could not only speak the language but were asking questions they usually didn't encounter. Thing is, I believe everyone facing infertility needs to advocate for themselves. And the only way one can truly advocate is by having information that they can understand and knowing what options are available.

The problem is, when I started reaching out to organizations that are currently working with patients, I encountered a couple of things. First, every single one of them was unable to pay me for my time but wanted me to lead things that would require a lot of time to prepare for. The second was that the educational seminars they wanted to run meant that people seek information would have to come to an event. Effectively outing themselves to the whole world. And while that may not seem like a big thing to anyone in the medical profession or those who have never been diagnosed, those who are living with infertility can tell you how terrifying outing oneself, especially at the beginning, truly is.

The beauty of the Bitter Infertiles podcast is anonymity. Be it with those who participate in the interviews all the way down to the listeners. One does not have to announce themselves to the world when they listen. One does not have to confront family, friends, loved one or strangers who think they are "helping" when they tune in. Instead, this was a place where knowledge could be dispensed. Stories could be shared. Opinions offered and feelings vented. All without having to don the scarlet "IF."

The online ALI community is an interesting one. Mel said it best: we are a community that is founded on pain. Through blogging, one has an opportunity to share their story, finding support. But what isn't directly talked about is how just the act of sharing one's story can be healing by confronting that pain. That instead of leaving the trauma for this experience bottled up, bloggers (and those who twit) are getting it out and confronting this demon. Yes, there are moments it hurts. Sometimes so much that it can feel impossible to even breathe. But I also know the data that shows how important to healing and resolving this processing can be.

Equally important is finding comradery. By finding community and others who "get it," those feelings of isolation can melt away.

The thing is, blogging and twitting isn't an option for everyone. Many have talked about how sharing at this level is usually limited to a certain type of person. For all those that write, there are many, many more who do not and their reasons are many for not doing so. It doesn't mean that they are somehow in denial or less than those that do. I can tell you first hand how damaging it is to have family pressuring you to shut up and accept the situation simply because they are uncomfortable by the idea of your pain. But community doesn't have to be limited solely to those who share their story. Those who listen or follow along can find healing too.

So, in light of all of this, I'm going to suggest something that will surely piss people off. I think we need to resurrect this podcast. Not the exact same one and nor do I think the original hosts so be a part of that. You read that right. Though I sincerely want to support and give to those who are not yet resolved, I believe there are those who are better suited for leading this endeavor.

It's likely that all of this may be met with silence. I may hear about it privately, being told (once again) that I should keep my mouth shut and that I'm overstepping. But I'm hoping that by speaking the wheels begin to turn. Conversations start. That maybe an idea that was once embraced and did do a lot of good for this community is resurrected. It's a hope I really am hanging onto.

In the meantime, let the venting begin.


  1. I think I'm missing some big chunks of info... I never knew why the podcast ended, so he'll ya, resurrect it! I loved it! I never felt excluded b/c the hosts were pregnant... I always felt included and as though everyone completely understood where I was in the process. Positive, educated, compassionate women with experience with infertility sure make another infertile 's experience feel validated, in my opinion.

  2. That podcast was so healing for me. I loved listening to it, and it was so comforting at a time when I felt devastated and alone. I hope that your effort to resurrect it is successful-I hated that it ended and you ladies received so much hate about it.

  3. I'm not sure why you think this idea would piss people off, other than that you're suggesting someone else take it on. ;) I will admit I hadn't listened to "Bitter Infertiles" prior to being invited as a guest, but I did listen to a couple of episodes before Pamela & I taped our episode and I thought they got better & better as time went on. I was a little sad that ours was the last episode, although (if I may be so bold, lol) if it had to be the last, I thought it was great to end on such a high note. ;)

    Personally, I didn't care that all of you were pregnant and I'm not sure it really mattered -- obviously, nobody had to look at you (lol) and you didn't talk that much about it... although it's understandable that you all soon became busy with other things and wanted to take a break. Even if none of the original have the time or inclination to take part in a revival, I would hope that if someone steps up, you would be around to offer some initial advice & encouragement, be "brand ambassadors" and pass the reins over. So long as you think the things that made the original podcasts so great could be replicated &/or improved on, why not?

  4. Yes! I loved listening to the Bitter Infertiles podcast! I didn't mind that all of you guys were pregnant at the same time because all of you (and most of us listening) had worked very hard to actually get pregnant. Although I am lucky enough to now have a daughter, I would still listen because I am going through my second round of treatment and as we all know, infertility simply doesn't go away after having a kid.

  5. How did I not know about the podcast before?! And now it's over? So sad... I think I'm missing chunks of info too because I don't see how the hosts being pregnant have anything to do with why it's over...

    1. Me too! I didn't know about, nor do I know any of the details surrounding it...but I would love to listen to it.

  6. While I could understand discomfort if the podcast was run by someone who had never experienced infertility (eg. a therapist who works with infertile women but is fertile herself), I don't really get the discomfort from someone who is simply on a different point in a continuum within infertility. But that's just me.

  7. I seriously never understood all the drama. Don't like it? Don't listen. I only learned about the podcast after it was over, but I downloaded and listened to all the episodes and thought they were great. I think part of the problem may have been that you guys simply got too popular and started attracting more and more listeners. Bigger audience = greater chance that there's gonna be a griping asshole out there who feels the need to be a jerk. It takes a thick skin to do something for public consumption, because there will always be naysayers.

  8. I never knew this podcast existed but it would have been very helpful when I was grappling with my diagnosis. I'm possibly interested in taking on this venture. Let's get in contact to discuss possibilities.

  9. Goodness, I remember there was drama, but honestly, at this point, the drama seems so over-the-top (no offense intended). I agree that it should be resurrected. I would be happy to discuss surrogacy if the podcast is restarted. We should be able to help each other and advocate without drama!

  10. I would support it being resurrected. Who will step up?

  11. I didn't realise there was drama, and so I don't understand why your suggestion should cause any either.

    I agree with your experiences. Organisations can't pay- and after six years of volunteering, I'm ready to be paid. And requiring people to front up for seminars scares people off. The beautify of the internet - of messageboards and blogging - is its anonymity, not for nasty trolls, but for those who are vulnerable and fearful. That was the beauty of your podcasts.

    Like Loribeth, I didn't listen to the podcasts before the interview with her (and Pamela), because it wasn't relevant to me so many years later. I'm not usually a podcast person. If it's something I want to concentrate on, then I prefer the written word. (That said, I'm listening to national radio interviews right now as I write this!) But we all work and learn and listen differently, and I think it has a real place here in this community. I'd be happy to help if I could. Though my accent might freak you all out!

  12. Was out of town this week and am behind on my blog reading -- promise to come back with more thoughts...xx

  13. I would love the podcast to return. I know there was drama but I think with the right people leading this, it could work. I loved listening and being involved and I know that many benefitted from listening. I couldn't lead a revival but I would be happy to be involved and participate. I know your heart is pulling you toward this for a reason.

  14. I think that resurrecting the podcast is an awesome idea. I was only vaguely aware of the drama, but I don't think it was universal, nor do I think we should silence some important voices just because some people didn't want to listen, or had opinions about who should be speaking for whom. We all have a lot to learn from each other. I'll cheer you on!


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