Are You Infertile Enough?
This will be a hard post to read. I’d appreciate it if you’d read through to the bottom.
April 15th usually is National Infertility Awareness Day, though next week begins National Infertility Awareness Week (NIAW). Resolve has asked bloggers to write on the theme “Resolve to know…” Actually, their theme is “Resolve to know more…” but I dropped the “more” because judging by the comment section that accompanies articles about infertility, many people have no knowledge when it comes to infertility. And in an Alice in Wonderland paradox fit for a tea party, you can’t really take “more” when you have nothing to begin with. So I’m just going to help people “Resolve to know,” full stop.
I decided to tackle a topic not on their list, which is “Resolve to know inclusivity.” This is a very uncomfortable topic, but I also think it’s an important one because we’re a thin-skinned group for good reason based on our interactions with the larger world. We know how it feels to be misunderstood by those clowns who frequent the comment section (I’ve been looking for a chance to use the term “clowns” in a blog post and I’ve found it!), but it feels ten times worse when the sense of exclusion or dismissiveness comes internally, either by perception, insinuation, direct words, or silence.
I direct this resolution both at individuals and also at organizations: those that are in place to educate or aid those with infertility. I’m directing this at clinics and agencies. I’m directing this at bloggers and non-bloggers. And I am directing this at myself.
Cracked.com had an honest post about fan communities that hits close to home because the description applied to the comic book/gaming/indie music communities has also been discussed in regards to the ALI community:
All of the groups to which I claim allegiance are “outsider” communities that espouse a culture of inclusiveness, support, and non-judgment and depend on constant influxes of new members in order to continue existing, yet at some point the fans of these communities decided it was up to them to prevent new people from joining them at all costs. And even if you’ve been a member for years, your fellow Hellboy and Modest Mouse enthusiasts are waiting for the first sign of weakness to swoop in and boot you straight out the door.
I would argue that we’re not really the booting sort. We’re more of the cold freeze or the ignore or the not listening sort. I own that. You need to own it too. I’m not saying we do it on purpose, but we do it inadvertently, and the effect of this is for people to feel excluded. We have adoptive parents who not only have to convince outsiders to use positive adoption language, but they need to convince insiders too. I’ve read posts by people living child-free after infertility who feel as if they’re invisible, forgotten members of the community at large, and posts by those parenting after infertility who feel as if they’ve been dropped like a hot potato. There are those of us who still feel very comfortable and supported by this community, but if there is even one person who feels as if they’re getting the message that they no longer belong, then that is one person too many.
So far in this post, I’ve put the blame on others for a person’s discomfort, but I think — as the fan community has found — that it’s up to ourselves as to whether we paint the whole of the community with the brush presented by a few non-inclusive apples. I’ve found a lot of assholes in the geek world, but I’ve also found some of the most amazing, wonderful, fun people. People who introduce me to really cool things and make me excited to open my email or feed reader. And I’ve found the same in the ALI community. Fewer assholes, though some still exist. I don’t allow them to define the community for me. Instead, I mentally nudge their antics out of the way the best I can, still support the people themselves the best I can, and generally hope that they will change with time and positive interactions. They’re sort of like that crazy family member that you can’t completely dismiss from the whole but you also don’t need to engage with if doing so is a drain.
I want to apologize for any time my words have made you feel excluded. We’re allowed to hold differing opinions, and I can’t own the times we’ve disagreed. I once had a person write me to tell me that she feels excluded on my blog because of my inclusivity; because I include people she hates and therefore make her feel excluded because she can’t be in this space without encountering those people she hates. And… uh… that’s not something I can apologize for. But the times when I’ve chosen the wrong word or stated something in a way that offended you; those are the things I can apologize for and promise that I will always try to do better if you communicate respectfully with me and explain how my word choice or ideology hurt your feelings. Respectful is key: communicating privately with someone who has upset you, keeping your tone in check and refraining from name calling is respectful. Calling them out in a blog post or complaining about them publicly is not.
Hopefully, we can all extend that promise to one another. It makes for a better, stronger community.
Everyone — yes, even the assholes — belong in the ALI community. If you’ve been diagnosed as infertile, fit the diagnostic definition for infertile even though you haven’t been formally diagnosed yet, worry that you’re headed in the direction of being diagnosed, or belong to any of the tangential communities that require assistance in family building due to situational infertility, you belong in the ALI community. You belong here regardless of which path you use to build — or not build — your family. You belong here whether you’re still grappling with your infertility, or whether you’ve resolved it. You belong here whether you’re childless/child-free or parenting. You belong here if your child is no longer alive; from chemical pregnancies to neonatal death. We’re a big community, at least, in my eyes.
And that is the point too; that we all define community based on our own terms when it comes to inclusivity. And you may choose to define the community differently than I do. But if you choose to use the term “ALI community,” that is a term that I coined back in 2008 in this embarrassing post, and it has a very large but concrete definition: adoption, loss, infertility. I don’t give you permission to take that term and twist it to exclude. Make up your own word if you want to do that.
I specifically made it enormous and general so it would include everyone on the blogroll. Every single situation or diagnosis on the blogroll fits into one of those three options. Every single person on that blogroll has their foot in one of the three rings in this venn diagram, and some stand in all three circles. By which I mean that of course you are more than a single word, but with those three words and keeping a broad definition for all three words, every single person can be included. The trick is making everyone feel included as well as having the person including his or herself.
That definition — coining the term “ALI community” — was meant to remove everything that makes our individual diagnoses and situations unique and differentiating and instead bring us all together as a single entity working toward mutual support and understanding so it can extend to the outer world. The term is not about focusing on donor gametes or surrogacy or adoption or IVF or living child-free or parenting… it is to boil away all of those other words we use to describe our place in this community and look at the few things we have in common. Because we’ll find that the emotional landscape is often shared even if the characters moving over that landscape are different.
If you use my term, I’d appreciate it if you also used the meaning behind it.
So.
I’ll end with a thank you to go with my apology. Thank you for the inclusivity. Thank you to everyone who has included me over the years. Thank you to everyone who includes others. I’ve long refused to be a leader, but I have no problem if you see me as a hub, a pollinator bringing people and ideas together. So thank you to everyone who has come here, participated in the comment section or with a project, and then jumped off this hub to find others via the blogroll or the comment section to connect with, taking the threads of the web with you to help with our cohesiveness.
Thank you to everyone who has inserted their ideas into the conversation, who has pointed out our mistakes so we can do better, and who has actively stuck around to make the community a better place. When we’re at our best, we are pretty damn good. And as someone who travels widely across the blogosphere due to her job, there are few places on the Internet that are this close-knit and supportive, sharing information and hugs to help each other get through managing the chronic nature of infertility.
If nothing else, this year, resolve to be inclusive. And if you’re additionally inclined, I’d love to hear what you resolve to have people know for NIAW.
23 comments
Well, I could resolve to have them know about your website :).
You’ve never made me feel excluded, so I thank you for that.
Thank you for the reminder…it is easy sometimes to forget.
I, being all English-major geeked out from attending a writing conference last weekend, am writing my NIAW essay on “Resolve to know more…about the power of stories”. We’ll see how this goes and how many times I change my mind…
Thank you for this timely reminder.
Mel, I think being you, the person you are to all of us in this community, would be a difficult thing to manage, and you continually do it with style and grace. I know I couldn’t do so good a job, and I doubt others could either. Thank you for who you are to all of us, and for reminding us what we should be to each other.
I second what Esperanza says, and I thank you for this post.
This must have been hard for you to write . Thank you for doing so. Thank you for insisting on inclusivity. Thank you for all you do for this community.
It’s occurred to me many times that maybe I should just stop blogging, stop reading ALI blogs, just leave that world behind – but I can’t. It’s a part of my identity now. And trust me, there were times I wish it weren’t, but it is what it is and now I know I can support others, hold the space sacred in a way if someone just wants me to listen and get it, let them know they’re not alone. So I appreciate you being the hub, the eye of the storm, the head librarian so to speak. Remember the virtual bar? Yeah, those were the days…..
This is another great post. Your blog has made me feel more included than any other, I think because we have much in common when it comes to infertility, but also because of your tone. Thanks for the reminder that we all need to work at this.
I like what Esperanza said best. Sometimes I use my blog as a place to “talk through” things that are bothering me. Including, at times, those trolls and such you pointed out, but I do always “let it go” with some passage of time and more thought. I resolve to try and get through that process more quickly. Thanks for being the pollinator.
Like what deathstar says, the ALI community is part of my identity, and thought I’m past my family-building years, I still choose to include myself here.
AND I feel welcome. So thank you. Thank you to all in the ALI community. You have taught me much about inclusivity.
You are a master of inclusivity – thanks!
Thank you, Mel, for continuing to stretch the group to be more inclusive and heard. Even when feeling like I’m in the outer limits of the group sometimes, I at least feel comfortable within the ALI community to express it. Then I don’t feel as alone and it is easier to accept my grief process and state of limbo.
Do you think it is human nature to need to exclude? That part of being an “insider” is that someone must be made an “outsider”? I’ve been mulling over some work hijinks this week, and this idea of community inclusivity/exclusivity. I’ve been wondering why some people are so threatened by a big tent. The only thing I can come up with is that consciously or subconsciously, including others reduces their…space? Entitlement? Insider status? In their own minds, at least.
Well, I can honestly say you’ve never said anything to offend me, at least. Although I tend to not offend easily in the first place, so I’m maybe not the best judge. Whatever. I do want to say that I think your vision of inclusiveness in the ALI community is brilliant, inspired, compassionate. I love what you’ve done with the blog roll. I know something that I struggled with when infertility became part of our lives was finding the humanity among the diagnoses, the medical terms, the uncertainty. Apart from the technical questions, the question on my mind was: How do I deal with all this and still have a sense of myself as a person? Exploring the blogs – many if not all perspectives out there – helped me to see that infertility does not make people less human or less complete – it’s another part of the journey.
I love this post. I know at times, we exclude, we siphon off what’s useful to us, and write off the rest. We decide who doesn’t get it, even when those people are in a boat we used to be in. I think a little inclusivity can go a long way in the ALI community. After all, it’s the club none of us wanted to join.
I’m going to do: “resolve to know when it’s time to move on” and yes, like you, I’m avoiding “more”. I think knowing when to change methods, or put one form of IF tx, adoption, etc. to bed is vital, as is knowing when to have the conversation about leaving active trying and treatment and pursuing behind you. There’s not a lot of preparation for making those decisions, and I think that contributes to the IF perception of those of us living childfree. I’d like to work on that.
Thank you. I’ve been on so many sides of this. Until my most recent round of testing I never felt like I was really “accepted” in the IF world even though we used Femara+Progesterone to conceive our first. I felt even more “kicked out” when we conceived our second with just progesterone. And the we lost him at 20 weeks and this community welcomed me. And now with an official IF diagnosis I am, as you said, in multiple rings.
But there are other places that I both feel excluded and also exclude. As a TFMR mom, I feel excluded when organizations highlight the work of antiTFMR sites. They are presented as pro-carrying to term, but their language is squarly antiTFMR. But then I in turn want to exclude them, and I suppose that isn’t right either. It can be a hard balence to walk.
This is fantastic. Being only a few years into my own battles the only exclusivity I’ve noted in my own blog is just not very many people commenting, which I think is different than the kind you’re thinking of. When someone looks for a friend, they look for someone who has very similar issues to them and tend to weed out those who are different. I know I try to read mostly people who have MFI and are in the middle of IVF treatments, because that’s where I am. I don’t really identify with those who are adopting or who have already had success with their treatments. And in my experience, because I’m between treatments right now, I’m not very interesting to others. I sometimes feel excluded, but really I think the crux of it for me is that I’m not interesting enough right now. I have to think of the actual “business of blogging” aspect first, before I think about deliberate exclusivity.
That being said, the pain olympics (love that term) really are hard to deal with sometimes. I think it must have something to do with people wanting to build a very tight, safe community where they are high up in the social rank, right in the center of it all. I hope this post helps people realize that those trying to come in just want to find that kind of community too, and let them come in.
I love that you said that we are understandably thin-skinned. For a group that has collectively been through so much grief and heartache, I think the ALI community is one of wonderful inclusivity and compassion. Yes, we all make mistakes (I’m sitting here trying to hope I’m not one of the assholes!), but in making those mistakes I hope we all learn from them too. I’m much more understanding of those parenting after infertility now, even though I am not. And being understanding of others makes it easier for me to navigate the world – both virtual and real life. And I thank all those who blog and listen and comment and, most of all, think.
I’ve often felt “not infertile enough.” I feel guilty that I “only” had two losses, that they were “only” at 5 weeks, and that I’m now 30 weeks pregnant and will give birth after “only” two years of TTC. It may just be my own insecurity making me feel like it’s not “enough.” I see how others have suffered and think that I can’t possibly be grouped with them, that I haven’t felt nearly enough pain to be considered an infertile. After all, I’m pregnant now. Your post, and the term ALI, helps me feel a like a part of a whole. I hope I can continue being supportive to others and don’t lose perspective after the fight is “over.”
You are awesome. The only time I was ever upset with your words was how you handled the PAIL debate. That debate ripped people apart and caused drama that still hasn’t healed. But one topic gone wrong out of the thousands you cover is great odds and I love your blog for it.
Yes, what a beautiful call to arms for the whole ALI lot. Something about the long-term struggle of this brings the focus inward, and we start to forget that everybody hurts. I’m guilty too–blogs I won’t “follow” back because she is too early in treatment, not infertile enough, and I’m terrified I’ll wake up one morning, unsuspectingly check my reader, and have to cope with the trauma of her quick success while I still toil away in uncertainty in year-5. I belonged to a small support group (only three of us) last year, and we’d all earned by that point the IVF-vet tag. The leader (a therapist) wanted to invite a new girl, in her mid-twenties, trying for almost a year, only at the outset of testing before treatment. It was a unanimous “oh no, please don’t” and one girl (now about to give birth, which ended the group and severed her relationship with the other girl) said, “I don’t come to support group to risk being traumatized by a 20-something’s pregnancy announcement.” Sad but true and too complicated to point fingers, but this is a powerful reminder that everyone in here needs support and inclusivity…because, when I think about it, I remember how this thing hurt like hell, even from the start, and how frightened and alone I felt when I was having my first loss while friends had their first children.
Joining the chorus of those who love you, this post and the overall inclusivity of our ALI Community. I do think we all have a responsibility to help others feel included and to include ourselves. This makes me think of Lori’s dad’s “draw a wider circle” concept, and remembering to include ourselves in those circles too.
I always try to be inclusive (though I am not perfect, of course) and more and more try to not take things as personally when I don’t feel included, as I have learned that much of the time it isn’t personal.
I will likely be writing a post about resolving to help people know (more) about secondary infertility and/or loss, since that I is what I believe I can speak best to about during NIAW. Thank you for sharing and calling us to share and act, as well.
Well said! Thanks Mel for being you and all that you do or have done. My life has definitely been enriched because of that day I stumbled across your blog and a post that had something to do with the Dixie Chicks.