I have a fantasy.
It intensifies whenever I read the Resolve message boards, or someone’s blog in the infertile community, or when I write and post my own story. “People should be reading this” is my ever persistent feeling. I wish for everyone, yes, everyone, to read one blog on infertility, a disease that affects 1 in 6 people of child-bearing age, a disease for which 1 in 8 seek medical treatment.
Society’s denial of all things not perfect in baby making land is no clearer than in the vast disparity between the amount of writing available on infertility and its surrounding struggles, and the public’s still lacking level of awareness. Yet given the numbers, it’s quite safe to say most everyone knows or is associated with someone struggling with the traumas, losses and emotional tolls of human reproduction’s shortcomings. Infertility – from the trauma of repeated failed fertility treatments and recurrent miscarriages to the losses and involuntary childlessness that often results – is an important thing for people to be informed about. Even when those going through it chose privacy, which is their right, a general awareness, from family, friends and co-workers to parents whose children may be one day affected, is important. I believe things don’t have to be as bad, both medically and socially, for those who come after us.
I find the latest flow of media attention being given to infertility issues, especially miscarriages, promising. It’s interesting though that the truth – the intense personal truths of the infertility experience – already exists in the virtual gated community of the IF blogosphere, whose readership I venture to say consists mostly of people in the IF community. I’ve found that the rare birds not in the IF community willing to follow along have proven to be the most interesting, supportive and fruitful of people.
I remember clearly when I started writing. It was about two years into our struggle, and maybe seven months or so after the colossal emotional shifts brought about by infertility had hit the fan. Those who have been through it know the ones – where all of life and the people in it suddenly seem foreign and you find yourself plastered daily with emotions too clobbering to be named. When you are forced to learn the skills of acceptance and self compassion at an inhumanely high rate of speed while simultaneously realizing the rest of the world is not going to be there for you unless you educate them with all of your NON-EXISTANT energy.
It was around this time that I noticed my brain, in my waking moments, writing. My experiences were spilling forth as stories, my pain dressed itself up as satire. Perhaps it was the best way to attempt to process my relentless trying to conceive experiences, or maybe it’s a normal human thing to organically create a narrative for your crisis when the outside world is lacking one. Either way, I was able to point out to myself that I was writing. And that I’d be writing whether or not I ever sat down at a keyboard, so I may as well sit down at some point just to see what happened. A diagnosis of endometriosis ensued, followed by surgery, recovery from surgery and deciding on a direction with IVF. “I’ve just got to sit down for an hour or two and get some things off my chest,” I’d say to my husband, and one day I finally found the time. I ended up sitting down for more like eight hours. And I couldn’t stop.
I DON’T remember clearly when I started posting, however. It was somewhere mid – shit storm of my third fresh cycle of IVF in 6 months. I recall feeling torn between the need to vent – as 3 years of trying to conceive amid multiple medical procedures, an indifferent world all with no time to process had left me engorged with indignation and rage – and the need to produce something useful that would educate. I remember a distinct yearning that people “get it” coupled with a sense that it was all vastly more complicated than that. Before I could be constructive, I needed to be true. Would the two be one in the same, or drastically different? Would my truth-telling result in the rejection I so feared? In the meantime, I was finding writing to be explosively therapeutic. After all, it gave me what the human race had failed to at the time – validation, and the ability to process my experiences without judgment.
But yet, the societal expectation of silence from people like me still hung heavy in the air, and there was not a shred of my being that was ok with it. Walking out into the world was like squeezing into a pair of ill – fitting jeans. I constantly felt as though I had been seriously maimed in a car accident, and was lying on the roadside with life threatening injuries while everyone who drove by waved and smiled. Part of me was less than thrilled over my voracious need to post my writing on a blog. I’d like to say it felt like being naked, but it was more than that. And let’s face it, as an almost 3 year infertility patient I had become a pro at being naked in front of multiple strangers. That wasn’t no big thing. Posting my writing was more of a total, supreme internal kind of nakedness. But I was tired of having the ball only in my court. That’s not how the survival of crisis and trauma are supposed to work. So I informed all family and friends and started posting with the secret desire to be understood along with the rational view of having no expectations.
And of course there are many who didn’t read and some who drifted away from me on purpose, but I don’t focus on them. Because along the way, something unexpected has happened – people who read my blog are the ones to whom I’ve become closer, the ones who I’ve come to feel organically comfortable around. And I can’t put my finger on what makes this so, exactly. There seems to be a better unspoken understanding between us. They seem to have a clearer sense of the gravity and depth of my experience. These things somehow make me feel respected and emotionally safe, something I know the value of as the result of so often not feeling this way around people anymore.
When we were out with our significant others, one friend out of nowhere said something to the effect of “If I bring up a topic that’s off limits, we need a code, because I don’t always know.” We agreed on a hand signal. It was the most generous offering ever and I think it made both of us feel good. Another friend has a niece with three children. Her second child was stillborn and my friend shares much of her niece’s journey with me, while having cultivated the knowledge that I, as someone who never got pregnant with my partner, have lost my children too. And, she’s always encouraging my writing and any other IF related endeavors I mention. My visits to the chiropractor are much more comfortable and real than they would otherwise be because my chiropractor also reads my blog. I notice that the topics of infertility and childlessness flow in and out of the conversation much more naturally with these people, it’s as if they possess the unspoken yet complex understanding that our infertility changed me forever, it’s a big part of me right now, it’ll always be a part of me but it’s far from being the whole of me.
Opening oneself to someone’s hard story means opening oneself to someone’s pain. And that often means having to look at the world and life in a way that is different from which one has known it. Ultimately, this willingness is something I appreciate. And value.
And I get it, reading a blog, especially one as long-winded as mine, is a big deal. There are things to deal with in life besides other people’s traumas. It can be cumbersome, and can feel like not such a fair trade especially in our closer relationships where we expect an often unrealistic level of evenness. But also being on the other side of things, I find blogs to be immensely helpful.
A close childhood friend of mine was unexpectedly widowed four years ago. She started writing soon after and I, admittedly, coming out of my round of five failed IUI’s and trying to figure out what to do next, was not always up for it. I didn’t understand the need to share that crisis stimulates, nor the importance of self – expression to the mourning process with the depth that I do now. But it would be infinitely harder to grieve a dead husband than it would be to abide with someone doing so, I reasoned. If she could do it, then I could damn well witness her doing it. I wanted to know how my friend was doing and what she was going through, so, I read whenever I could.
And it ended up being interesting. Tragically, heartbreakingly so. I was opened to the emotional and life ramifications of middle-aged – widowhood and better schooled on what to do and on what not to do in the face of something one can’t understand unless they’ve been through it. Her blog posts provided bridges for our in person conversations. They helped to clarify our quasi common ground (turns out those grieving untimely deaths get a lot of platitudes too, oh and hey guess what – the plight of the childless widow goes invalidated and is often ignored in the widow community – what a shocker) as well as that which never could be. Ultimately, I’m richer and better educated for opening myself to her pain and am grateful for her sharing.
While some may see having a blog as self – indulgent, I look at it differently. A blog is an effort to educate, to connect and a plea for understanding. It fills in the blanks that passing conversation and daily life leave, it delves into the complexities of primarily visceral experiences to which the verbal realm cannot do justice. And, in the case of “taboo” life experiences, a blog is a brave first step in attempting to heal the destruction of silence.
Just as having a child changes one’s perspective, so does struggling to get to have one. Neither transformed perspective is better. And constructing an unexpected childfree life while healing from multiple failed fertility treatments and grieving the loss of parenthood entirely? That’s about as life altering as losses come (such situations arrive not by choice, following much trauma, sans manual and void of social validation, after all). There just might be something people could learn from bearing witness to that.
So read an infertility blog, people!! The truth is already out there in your friendly neighborhood infertility blogosphere, just a mere google away for those who don’t know someone with a blog. Please keep any unsupportive comments to yourself though, out of respect for the immense amount of pain and loss many of us are often dealing with. And please be sensitive to the fact that many in our community struggle with guilt and shame – you know, for the boatload of ABSOLUTELY FUCKING NOTHING we’ve done wrong and all.
The days of outward conformity to a life with easily conceived children are slowly eroding. It is no longer our job to remain silent in the face of the traumas, losses and childlessness that are normal aspects of human reproduction. I dare say the IF blogosphere offers much untapped wisdom and perspective. The catalyst for change already exists. People just need to start looking.
16 thoughts on “Unexpected Benefits of Infertility Blogging”
Yet again BIG THANKS to you Sarah! You have succinctly & poignantly articulated 99.9% of my experience living w IF. We spent over 10 years TTC (naturally & consciously for many until diagnosis of endo at bloody 40 y.o., then 7 failed & miserable IVFs + some ‘bonus’ lost friendships…), we gave up TTC approx. 2 yrs ago & although I am healing, the grief & loss will always be with me, regardless of how my life may grow from here. However irrational perhaps, I now seriously fear some things more, like losing my husband early. Anyway, I share yr blog via my totally unrelated biz Twitter account in Aust in the hope it will help people like us everywhere! xx
Hi Desiree – thanks for the shares!!
I can relate to the fears you mentioned and I don’t think they are irrational. Losing the future we thought we’d get to have will make everything we go through from here different. Sure we don’t know in what way, but I feel there’s a lot of recalibrating that goes on. I know my friend who lost her husband feels more intensely about the prospect of her parents dying as she won’t be going through it with the love of her life. In addition to sharing your fear of losing my husband early, I also fear having to battle a disease – not for the disease itself but having to hear about how everyone else going trough it is “getting through it for their children”. Random, I know.
I was diagnosed with endo at 40 too. Seriously!! The medical profession has totally dropped the ball with our disease, that’s for sure.
Amen, sister! I feel like there would be so many benefits to society being more open about the struggles people can face surrounding pregnancy. I, and probably most people, came into this with no idea how difficult it would be or how very common IF is. I wish I’d had a more realistic set of expectations rather than an assumption I’d just easily have babies! I also had no idea how common miscarriages and even stillbirth can be and how devastating that is. I haven’t been there myself, but some of my best friends have. No one should have to suffer these losses in silence!! Anyway, thanks for this. Appreciate your blog 🙂
Thanks so much!
I totally hear you on the realistic expectations (or lack thereof). Since we started trying to conceive when I was 38, I was not expecting it to happen right away. And that was the end of me being “informed”. I figured that if I ran into problems then reproductive medicine could fix it (my entire being just groaned as I typed that). How was I supposed to know reproductive “medicine” often sucks at fixing reproductive things?
The space between reality and perceived reality regarding human reproduction is massive…..but I do think we can change this for the better.
There have been so many wonderful and unanticipated benefits for me, too. I think it’s great that infertility is sneaking it’s way into mainstream media, but there are problems with that, too. The first problem that I can think of is that they often focus on the medical aspect of infertility, which is important, but only part of the picture. Secondly the mainstream articles that I see often whitewash over the emotional impact of it. And one needs to do no more than browse the comments section of any article about infertility to observe the gross lack of understanding (and general douchebaggery). Blogs are needed because they provide raw, unfiltered accounts of those in the trenches. Everyone who reads may not be able to be supportive, but at least they can get a better understanding of the depths of grief, pain, etc. experienced by people who battle infertility.
I started reading blogs (just reading, not even commenting) probably six months before I started my own. In reading I knew I’d found “my people”, people who truly get me. Then I started my blog probably two months before I pressed publish on my first post and still have probably a dozen posts in my draft folder from the very beginning. I wasn’t expecting anything…..I was mainly doing it for myself. But the friendships that I’ve developed as a direct result of my blog blow me away on a daily basis. And my healing has been immensely helped by writing. Maybe someday I’ll even be strong enough to not blog (semi) anonymously.
Also, randomly, have you heard Disturbed’s cover of Sound of Silence? You should look it up if you haven’t. 🙂
I’m totally into your analysis of mainstream articles vs infertility blogs. I think your point on everyone not being able to be supportive but at least they’ll be more aware and informed is spot on. Actually, I was kind of feeling like your comment should be its own post…..an elaborated version would be interesting.
That you started you blog for yourself is probably one of the reasons why your blog comes across as so authentic. What is it about that writing/healing relationship anyway?? It’s amazing.
PS Will do on the Disturbed cover:-)
I read every word of this, and as I wrote my first post on my blog last week “coming out” with our infertility, I’d found that what you say is true. There is talk going on out there about IF, and the more people read about it and give a voice to what we have to say, the better off we will all be.
Congrats on your “coming out”, Elizabeth! We need silence sometimes to protect ourselves emotionally. But I’ve always found it strange that infertility, while normal, is still so far from being normalized. Good for you for adding your voice.
Excellent post, Sarah! I was nodding vigorously throughout…more than a few passages jumped out at me as they were reminiscent of my of experience. I will highlight two in particular:
“It was around this time that I noticed my brain, in my waking moments, writing. My experiences were spilling forth as stories, my pain dressed itself up as satire.”
” …A blog is an effort to educate, to connect and a plea for understanding. It fills in the blanks that passing conversation and daily life leave, it delves into the complexities of primarily visceral experiences to which the verbal realm cannot do justice. And, in the case of “taboo” life experiences, a blog is a brave first step in attempting to heal the destruction of silence.”
Now I am off to Tweet this blog post as I hope it will serve as catalyst for change! xo
Thanks so much!! Did anything change yet??
And as always thank you for validating my experiences – validation for me is a priceless drop of light that shines on a things that have been perceived and felt mostly in the dark.
I’m off to go work on my patience – have a feeling I’ll need a lot more than I currently have for this social change thing.
I love this so much. And I love that you said, “…the IF blogosphere offers much untapped wisdom and perspective.” I’ve often said that I wish parents would realise this, and would reach out.
I agree that here in the blogging community, the “catalyst for change already exists.” But I doubt that people will start looking. Not until we’ve pushed on out there a lot more than we have yet. (And I know how hard that is for so many of us). But we’re making progress, taking small steps, and we might get there. One by one, people might start looking. I’m hopeful at least. You’re doing a great job here of promoting it!
I doubt that people will start looking too, Mali!! I laughed when I read that. The question as to what will end up informing people and creating a societal shift in awareness seems to be a never ending one. And thanks for mentioning the difficulties involved in putting ourselves out there. As a still bereft and traumatized individual, I’ve only got so much gas in the tank. There are many days where I’m sure my vulnerabilities outweigh my strengths and many situations where I need to be taking care of myself as opposed to playing advocate. But I’m hopeful too things will somehow someday change.
Thank you Sarah for another awesome post. Much respect for you, Bent not Broken, and Pamela for what you have done to get this message out there. Writing has helped me but I’ve kept my journey to myself slowing coming out to others as it feels right and I have not blogged a thing. I think it’s important to remember how individual this journey is and the more we get it out there the better. Your courage gives me courage.
PS…the Disturbed cover gave me chills. So good. Thank you Bent for sharing.
It’s awesome to hear that writing has helped you too. Wishing you all the best in any “coming out endeavors” you chose to take on, the key being as you said, “as it feels right”. It’s all so hard. I’m hoping at some point in the future all aspects of IF are more normalized, in the meantime we have to serve ourselves in whatever way is right for us.
I am a million years behind on my blog reading and just read this. I love all of it. It’s so true. I definitely have gotten the feeling people have felt like I was being self indulgent with my talking about cancer/infertility. Like I’m still grasping for sympathy. But, it totally fucking helps to write. To get it out of your head. To keep all that inside is too much. It’s unhealthy. And sometimes people won’t or can’t listen. So we have to write and find some sanity, find some people who understand. I’m so glad you that did. Reading your words has definitely added to my life.
Your comment got me wondering about the untrue connection people make between mourning and self indulgence. More cultural misguidedness, I guess, on personal responsibility, wisdom, trauma and loss. I think self expression in the face of trauma and loss is often looked upon as weak, however we all know it’s one of the bravest things a tattered soul can initiate. I’m so glad you’re writing too, I’ve learned much from all you have to share. xxoo