When Your Trauma and Loss Doesn’t Count

Why this infertility survivor is NOT off to see the wizard

Round 1 Part 1

I have an obsession. However, this is not news. I’m a somewhat obsessive person by nature, always have been, and am no different in my infertile life. There are certain aspects of infertility that weigh on my being considerably more than others, and even provoke little social experiments. Like when to speak and when not to, how to speak up, and being honest and loving towards even my darkest of emotions along with much of the world’s seeming need to shut that down in those of us who suffer. The very pre-enlightenment period myths that circulate out there about our disease never fail to raise at least one of my eyebrows, and often call forth in me stronger reactions, being that a funny little thing has happened since 1593 called SCIENCE.

My obsession of the moment though is disenfranchised grief. I often say that, at least for me, the world not acknowledging my losses could almost rival the pain of not getting to have children itself. This truth surprises me in such a way that I don’t quite understand my own feelings, yet, some days I feel as if this disenfranchised grief thing could eat me alive.

My own personal definition of disenfranchised grief is “the pain and disconnection one suffers as the result of society uttering failing to receive a bereaved person as they are.”

Or, another definition from the people over at whatsyourgrief.com – “Grief becomes disenfranchised when we don’t have societal validation of our loss and grieving process.”

And, the disenfranchised grief section on Wikipedia ads, “For disenfranchised grieving there are some complications that are not always present in other grieving processes. First, there are usually intensified reactions to death or loss. For example, the disenfranchised griever may become more depressed or angry due to not being able to fully express his or her grief and are unable to openly talk about the loss recently experienced. Second, disenfranchised grief means society does not recognize the death or loss; therefore, the griever does not have strong support socially, again not being able to openly talk about what he or she is personally dealing with. These are just a few of the complications that come with disenfranchised grief.”

I recently had a week that exacerbated my disenfranchised grief obsession. And you, my cursed lucky readers, of course get to hear ALL about it…………………………………

 

It seems curiosity has killed the cat. Again.

In addition to this being our first holiday season knowing we will forever be without our children, December managed to drop plenty more “gifts” on us amid our grief. Over the course of two weeks, my husband and I were treated to one pregnancy announcement, one birth from a pregnancy we didn’t know about (a birth which yielded a family member’s third child by a third different father), and a major and traumatic upheaval within my close extended family. With by far the least damaging result being my entire family could not come for Christmas as planned. So I thought it would be a great and productive thing to swing up to Stockbridge, Mass., on January 2nd for a weekend workshop on trauma given by a psychiatrist whose work integrates brain, body and social connections to understand and treat trauma. Unfortunately, I tend to be full of such bright ideas.

Although I did say to a few before I left, “Just watch, probably even the trauma people aren’t aware that infertility is a trauma.” Nothing surprises me these days.

From the beginning of the first session I loosely paraphrase: “We are mammals. Trauma is about disconnecting. To heal trauma we need to reconnect. We mammals like to move, and band together, and imitate each other, and have babies…..”

Uh – oh. I am so fucking fucked.

Quite a haughty statement to make being that infertility, like breast cancer, is a disease that effects one in eight people. What if he had added that mammals have disease free breasts to his proclamation? Though from the viewpoint of infertility being a disease, I can see what he said as far as IDEALLY mammals are programmed to have babies. But what about those of us who can’t? “Some estimates suggest between 3 – 7% of all couples or women have an unresolved problem of infertility” according to the Infertility section of Wikipedia.  Far from a majority, but also far from an obscurity. In addition, the child free by choice population, along with those who are childless by circumstance – death of a spouse, break up of a marriage, or infertility resulting from other diseases, leaves a total of about 20% of our population without children. Mammals have babies. True on a level. And a very dumb thing to say to a random group of 130 people on another.

Moments later the facilitators had all of us walking randomly around the room, walking next to another person, dancing with another person, then morphing into groups of four, eight and twelve or more. Completely not what I had expected, but I made an effort to go with it, all while observing in myself a rising level of discomfort. Then out of practically nowhere I found myself sitting with a group of about twelve women. We were told to go around in a circle and introduce ourselves, say why we were there, and tell the group one thing we wanted them to know about us and one thing we didn’t. By this time many of my alarm bells were anxiously clanging. On the telling “what we want people to know” go around, the third or so person let us know she was excited to be a new grandmother.

My immediate internal observation of “I’ll never have that joy” sat silently beside everyone else’s audible pleasant sighs.

The sixth person was thrilled that she had raised two wonderful children.

My private “I’ll never experience that satisfaction, even though I worked harder than everyone else here to get to do that” jockeyed with some soft female cooing.

By the time it came to me, which was around person number nine, I was having a full blown panic attack. “I’m going to pass,” I said. I connected to my breath as the circle finished and started on the “what we don’t want people to know” go around. The mere idea that I should have to take Xanax during a trauma workshop completely pissed me off, and I stubbornly refused on principle.

Should I or shouldn’t I? Flailing for cognition, part of me didn’t want to miss this tiny chance to let people know that we EXIST. And somehow, the words spilled out. “My name is Sarah. What I do AND don’t want people to know is that I’m an infertility survivor. I’m here to learn more about my own trauma, which is especially important when you’ve suffered a trauma, like infertility, that society fails to recognize as such. Oh, and what I don’t want people to know is that being in groups of women gives me panic attacks.”

My pleasure continued as, to my horror, we went around the room and had EVERY SINGLE PERSON introduced by their group leader. There is, after all, no better a depiction of early child losses than the human race itself. Though references to other things in life, such as advanced degrees, softened my experience a bit, I still had to hear things as we went around the room like “I’m here with my son” and “This is so and so, she’s five months pregnant” and “This is so and so. The first time she came to Kripalu she was in her mother’s belly.”

On the outside I hear a chorus of cheerful knowing “Ooooohs”. From my internal emotional body I hear what I’m convinced is its last deep guttural groan, like the kind of sound you hear from a dying animal giving up on its own life. Well. We are mammals, right?

Somewhere in the middle of it all, I play my “what would be more pleasant than this right now” game that I often seem to play during panic attacks. Death by starvation, being submerged indefinitely in freezing water, and sitting on a porcupine all came to mind.

Concerned as to what I’d have to endure in the following days, I went up to speak to him although it was the last thing I wanted to do. All of us in the IF community know that even the smartest, most knowledgeable, eloquent and sensitive of people are typically reduced to dunces when it comes to the topic of infertility. We’ve all experienced this time and time again, our fantasy of being off to see the wizard long ago dissolved in the harsh knowledge that, in terms of understanding and guidance from the outside world, we are truly in this alone. I did my best to open myself a little, and I have to say he was not a dunce. Upon the reveal of my IF survivor status, he didn’t say “what’s that?” which is always a good sign. There was of course the usual lack of an “I’m sorry” or “I’m sorry for your loss” or an empathetic facial expression or physical gesture of any kind. He did make efforts to be understanding and provide suggestions. It was just that through those efforts, it was clear he didn’t get it at all. Quite a lonely wrenching feeling for me who was already feeling such turmoil. He first suggested that I needed to feel myself and get back in my body.

I rejected this. I’m far from perfect at it, but as a general run of the mill yoga practitioner, being in one’s body is a way of life, not the cutting edge profundity it was often presented as in the workshop. And when you’re going through fertility treatments, there are influences on all sides trying to get you out of your body, out of your entire self for that matter, and I rebelled against them every step of the way. I got back on the yoga horse after each and every one of my five IUI’s, laparoscopy surgery, and five IVF’s. I insisted on thinking and feeling as I was, not as the beacon of manufactured peripheral “positivity” that some expected of me. And I quickly recalled the transfer for my first IVF, when I refused to stop focusing on breathing into my pelvis as the catheter was being inserted into my uterus while the eager embryologist tried to “distract” me with the embryology report.

“Well, I’d have to know what traumatizes you, otherwise I can’t help you.” He says. And right then and there I lose the ability to speak as the difference in our “languages” hits me. How could a person who was in the same room NOT see how this scenario would be traumatizing to an infertile? I am flooded with a sense of defeat in the realization that, after having experienced more alienation and sorrow than a human can handle over the course of 2.5 hours, I am unable to turn right around and explain it in a couple of sentences.

He suggests that I need to reconnect to people. “That’s hard though, being that infertility is so socially isolating”, I desperately pump out.

“But this is a warm, safe environment”, he comments while looking at me quizzically. From the viewpoint of the infertile, he could not have been more wrong.

The truth of the matter is that my fellow humans are a cauldron of triggers, the very continuation of life itself my figurative perpetrator. What to do? What to do when connecting with people nine times out of ten brings more pain than isolating yourself from them? The truth of the matter is that during the prolonged group introduction, my being plummeted into the darkest of places where I found myself desperately yearning for any other trauma than the one I got. In that shadowed crevice I was hit like I had never been before with the reality that the very existence of the human race is a permanent and unrelenting reminder of my losses.

Never above giving it the old college try, against my better judgment I met my group for lunch the next day. We were instructed to do so and were told that this would be comforting in the face of the subject of trauma, which is intense and requires a lot of processing.

TO BE CONTINUED…….