Evolvement in the midst of crap, trauma, and toddlers in fertility clinic waiting rooms
Below is a repost (with some new thoughts added on at the end) from this past fall from my old space on Blogspot.
I was in the middle of my fourth round of IVF in nine months and not feeling it at all. Every procedure, drug delivery, drug side effect, and doctor’s visit was a total slog. “I can’t stand this anymore. I really don’t want to be doing this. I cannot stand this stupid stupid fucking shit. I just want it to end. I just want it over. This is horrible. I CAN’T believe I’m still here. I would not wish this on my WORST enemy” was the soundtrack that played over and over and over in my mind. When you have had a total of 14 embryos transferred, 11 of them grade a, that have amounted to nothing, the notion that you might be working towards getting pregnant fades real fast. I was at the “I need to do everything I need to do to confirm we CAN’T get pregnant so that we can move on” point.
During this time I was sitting in my doctor’s waiting room anticipating yet another glorious vaginal sonogram. Having already started Lupron I was in the desirable mood of someone who had been forced to transition into menopause over the course of about 10 minutes. And as my luck would have it, it was also during this time that another patient in the waiting room had chosen to bring her little brat child along with her to her fertility doctor appointment. Ahh, the children of secondary infertiles in fertility clinic waiting rooms. Although a few clinics have signs up in their waiting rooms stating things such as “Due to the sensitive nature of our practice, we ask that you make prior arrangements for child care prior to each office visit. Thank you,” the vast majority unfortunately choose not to deal with this issue. I used to talk about it with one of my former fellow infertiles who much more kindly would refer to these brats as “junior”. She had just gotten pregnant, however, so I was down a texting buddy and left to fend for myself. As it would turn out, junior was in some kind of form that day. Although his grandma was with him and could have made herself useful by keeping him occupied in the car, or ANYWHERE ELSE AWAY FROM ME WHO IS LIKELY IN THE PROCESS OF NOT GETTING PREGNANT, junior did as he pleased. He paraded all around the waiting room, came way too close to me for comfort, and babbled up a storm with no prompts to quiet down (or SHUT THE FUCK UP as I was silently willing him to do). Junior had a “special” liking for the big Poland Spring water cooler bottles that lined one of the walls and had no trouble discerning which ones were empty so that he could toss them about the waiting room. What a little genius! For someone who has gone through all that I’ve gone through, scenarios such as this are not only annoying but are actually downright traumatizing. My heart rate goes way up, I start to shake, and I have to work to control my breathing. Keeping in mind that our nervous systems don’t recognize the difference between physical and emotional threats. Even worse, there were some patients in the waiting room who dared to be amused by ill-behaved narcissistic junior. “Should I join in their banter?” I sarcastically wondered. “Hey, this is my fourth IVF and I might not even get to have a child, but isn’t that adorable chuckle chuckle?” or perhaps “So nice of you to sic your toddler on me when I’m in the process of being denied children he’s sooooo crafty!” or better yet “Hee hee isn’t that cute I’M part of the 30% of patients for whom fertility treatments fail to work.”
The scenario culminated with the big crescendo of mom sitting down and snuggling with junior on her lap. Right in the chair next to me of course. Where else. I let out a big noticeable sigh, got up and informed the front desk I’d be waiting in my car, and sauntered out of the waiting room. The one thing I’ve learned about human reactions to trauma triggers is that they are nonnegotiable. My body’s reactions to triggers such as babies and young children are natural and normal for what I’ve endured. It’s not something that can be willed away and does not result from an attitude or way of thinking. The receptionist called my cell when it was my turn, and I made my entrance back into the waiting room giving mom bitch the most disgusted look I could muster.
Sitting on the exam table with my pants off and covered by a thin paper cloth, I am torn. Having been traumatized in a waiting room is important, yet I do not want the raising of the issue to detract from my medical treatment. And the fact that I’m not wearing pants and am about to have something inserted into my vagina might indicate that now is not the right time to address issues of panic and ptsd. I’m not sure, I’m on the fence, I know that what I say will not change things yet I feel compelled to speak, but, this is a tricky tricky situation, maybe I should just forget it………my doctor opens the door and in a flash all I can see, out of nowhere, is Grandma Esther’s face.
Grandma Esther was my sister-in-law’s grandmother. Julio and I didn’t know her well and I could count the situations where we spent time together on one hand, probably with room to spare. But she made quite an impression on me and Julio and from what I was told, she was somewhat smitten with us as well. We spent the most time together at my brother and sister in law’s wedding where we learned she was quite the blunt spitfire. In the middle of the ceremony she and I lit the unity candle together. Not sure what to do or if the minister was going to talk us through it clearly, I shot her a look as if to say “what do we do?” And she, up in front of 150 people, twisted up her face, emphatically held up her arms and shrugged her shoulders as if to say “I don’t know…it’s not MY problem……” I guess she had more important things on her mind, like changing into her sneakers so that she could dance to the Bee Gees at the reception at age 80. I believe she had made it clear prior this was what she wanted to do and I think my sister in law arranged for the dj to play a Bee Gees set early in the evening so that Esther could partake. The day after the wedding we were mingling at my sister in law’s childhood home. Sitting around in a circle, Esther said something, I forget what, and my sister in law’s mom told her to be quiet. Before Esther could respond I offered my empathy, telling her that I know how it feels because a lot of people tell me to shut up too. “WELL,” Esther said with defiant conviction as she leaned forward in her chair, her head bobbing, “I hope you tell them to go to HELL!!” She leaned back in her chair with a huff as we burst out laughing. We were still replaying the scenario on our car ride home from the beautiful Adirondacks the next day, repeating “I hope you tell them to go to HELL” and laughing for much of the ride home. And from that day forward, even after she passed, this scenario would come to mind in situations when I wasn’t sure what to say or if I should speak at all. “Maybe I should give it an Esther.” I would think. But never had she come to me in such an instant non thought out flash like this, as if she were being purposely shown to me, and the moment I saw her face I knew I had to say something. Not only that, I suddenly felt like I could.
Not that my goal was to tell my doctor to go to hell. I like my doctor. But the real and lasting message I had gotten from Esther’s outburst was to not let myself be silenced. If I have something to say then I have the right to say it, whether anyone else wants to hear it or not. And let’s face it, even the nicest of people in the fertility business would prefer that the issue of children in the waiting room not be raised. There’s the unspoken expectation that we’re all going to be good little infertiles who will have, or at least fake, a never-ending stream of happiness for those who receive what we are being unfairly and unjustly denied. And then there’s the ignoring of, or perhaps the downright delusional aversion to the fact that repeated failed fertility treatments traumatize a person.
Doctor: How are you?
Sarah: I feel rattled.
Doctor: (surprised) What?
Sarah: I feel rattled.
Doctor: Why?
Sarah: When people are allowed to have their children in the waiting room, it’s upsetting. And for someone such as myself who might not get to have children at all, it’s an unfair and unreasonable situation.
I put my feet in the stirrups and slide down the table, assuming my infertile position.
Sarah: Just sayin. (I shift around on the table).
Doctor: I know it’s a difficult issue, but I can’t really tell people not to bring their children. I rely on people to use their judgment and have someone keep the child outside or whatever.
I don’t relent, yet I choose to stay silent, hoping that the absence of an “oh, that’s ok” or anything like it would speak volumes. I’ve made my position clear, and I know this is not true. I didn’t fall off of the infertile turnip truck yesterday. I have been to my share of doctors and clinics as well as knowing a few infertiles who go to other doctors where they have signs in their waiting rooms. Unfortunately these are few and far between but they do exist. A practice can ask people not to have their children in the waiting area, or they can CHOOSE not to. I’m glad my doctor is not entirely dismissing me but I’m wishing he would just own that this is something he is choosing not to prioritize. And the combination of the notion of people using their judgment coupled with junior’s actual waiting room escapades of the day are enough to really get me talking. Conveying this subject matter in a way that my doctor would want to listen to me is like trying to thread a needle with Niagara Falls. So I pull the reins on my true nature and decide less is more.
Doctor: (The wand goes in) Were there children in the waiting room today?
Sarah: Yep. (Pause, staring blankly at the ceiling) Sitting right next to me.
I’m not talking about this when there’s a wand in my vag, I’ve decided. My doctor and I move onto the medical stuff, as it should be.
For someone to be overtly doting on their child while prancing and parading them through a waiting room that could also, at any given time, hold the permanently childless, those who have suffered numerous miscarriages, and those who have even lost babies of their own, is a stunning act of unkindness. This holds true whether the practice addresses this issue or not. The policy of not addressing this issue clearly caters to “repeat customers”, those in the infertile community who more often than not have had it the easiest, while leaving those of us who have made it to the edge of the “I really may not get to have a child” cliff to fend for ourselves and suffer in silence. It is a choice that clearly throws the least amongst us under the bus.
I’m not saying that those dealing with secondary infertility have it easy. I stand up for them whenever I can when I hear stupid comments such as “she should try to be grateful for the child she does have.” Really? Now wanting more children makes one “ungrateful”? Gimme a break. People dealing with infertility have every right to try to have more children, and owe no one an explanation for it. There’s no reason they don’t deserve to expand their families just like everybody else. I can see how going through fertility treatments with a child would present a definite set of issues and challenges. A definite set of issues and challenges AS A MOTHER, however, not as someone who doesn’t get to be one. Therein lies the difference.
“Who could DO such a thing??” I exclaimed to my infertility counselor at my next appointment. There is, after all, something extra violating in being traumatized and disregarded by people who are supposed to be part of your own. I figure that many (though not all) of these people probably had to do IVF for a clear medical reason, but got it on the first try. Although they had to work a little harder than the average person, getting to be a parent was never in question. Or even worse, they got pregnant on a pathetic little IUI. (By the way, does anyone actually even get pregnant with those? For me they were just a smoke screen that prolonged my torture and warded off any kind of REAL diagnosis….). I also figure the people who cheerfully join in the child parade in waiting rooms either 1) haven’t had to work that hard yet and are therefore not yet traumatized OR 2) Are just as traumatized as me but don’t have the balls or the self-compassion to be truthful about it.
I run the interaction with my doctor by her, and she plays it back for me as she is so artful at doing. That the way I handled it was great, that I was clear and to the point but not aggressive. That I didn’t attack and my approach was not accusatory. “You led with your feelings, I like that, “I feel rattled””, she said. She also pointed out that I was letting the other person know where I was but not preventing them from speaking.
As she plays this back to me I feel like I’m watching a movie. The person she’s describing sounds like someone I always wanted to be. Possessing the ability to reign in clarity every now and then, strong in herself, balanced on a good day even. And then it dawns on me that she IS describing me. And something I did that I couldn’t see because being in the situation itself had felt so horrible and was unscripted so I had to work very hard to get it right. Was that really ME? Me, who once upon a time referred to myself as “the head”, leading with an EMOTION?? Hark. “I wouldn’t have been able to do that 2 years ago.” I said. “I never would have led with an emotion, I would have either gotten mad and exploded, or said nothing at all. And I wouldn’t have been honest enough with myself to go to my car either. I would have been less aware of how I was feeling and way more hell-bent on fighting it. Wow.” We pause. My eyes fill with tears as it hits me how far I’ve come. “I guess I’ve still been able to grow and evolve in spite of being in the middle of all of this crap. I just don’t always see it because shit keeps happening to me and I keep getting kicked down and it takes so much work just to be, to just get through moments.” I sniffle. “But I guess I really did do the things you were describing.” I then break into a smile. “And I even was able to do them with my pants off! Now how ‘bout that!”
So I took your advice Esther. And I even, I don’t know how, managed to do it in a productive adult manner under much adversity. I hope you’re watching.
Epilogue:
Being a few months away from ART I can say that not only has my opinion on the issue of children in fertility clinic waiting rooms not changed, it has become stronger. It seems to be only at a distance that I can appreciate how vulnerable and in how much pain I was towards the end of our four fresh IVF cycles done over the course of nine months that produced nothing. Having children, especially babies and toddlers, in fertility clinic waiting rooms is no kinder than making soldiers returning from war with PTSD watch battle footage while waiting for their medical treatment.
I wonder if the under acknowledgement of this issue on the part of the reproductive medical profession is, on some level, a selfish attempt to divert attention from the fact that fertility treatments do not work for everyone. I can accept a few “life happens” situations where the baby sitter cancels and every now and then people have to bring a child. What is disgustingly fascinating, however, is that so many who bring their children make no effort to be courteous and respect the pain of others. (Which is, after all, what I assume they intend on teaching their child or children, is it not? A little personal practice might be a good idea). Rather than sitting quietly and making an effort to have minimal interaction with those in the waiting room, many try to be as conspicuous as possible. They offer hurtful chatter, announce milestones, and fuss over their children as though they are in contention for an academy award. Worse, one of the nurses at the clinic I went to would stab us (while we were of course already fighting off strangulation) by always fussing over the babies and toddlers people so rudely brought. If we had been soldiers with PTSD being forced to watch battle footage, she would have been the one pointing to the TV and cranking the volume.
The Romper Room tone that was often in the waiting room was one of the many reasons we quit ART. I could no longer disrespect myself by going to a place that chose to be evasive towards the fact that I was traumatized and suffering. Below is an example of a scene I had to try not to puke on view while having our last embryos transferred this past January.
Yes, the unnecessary bastion of baby holiday cards that should never be put up in the first place tragically stayed up through the SECOND week in January. It was displays like this that brought me to swear that if I got a baby out of this, I would never ever send a picture. Out of respect for my infertile community alone. And if anyone wanted to see the baby that badly, they could come to my house. Too bad I never got the chance. Should we go on to adopt, I’ll be sure to send an announcement to my old doctor with a grand scale ADOPTION heading, perhaps along with instructions to post it in their waiting room.
To be clear, this is not a situation that can be fixed with new age pop psychology. Don’t let my trauma symptoms be conveniently misinterpreted as a misplacement of anger or bitterness towards the success of others. They are neither. The way I and most people feel in these situations is not “our problem”. Rather, it is evidence of a deep and significant wound we did nothing to procure that needs to be considered and respected by others. Especially in the places where we are receiving medical attention. PTSD, for women who have suffered repeated failed fertility treatments, is indeed real.
One of my friends and fellow IFers said it best. “Having children in fertility clinic waiting rooms hurts people. When you get up in the morning and decide to bring your child to a fertility clinic, you are deciding to hurt people that day.”
I feel so flattered to have been featured in the last line! And I agree: the holiday cards are a way for the clinic to flaunt their competence at the expense of the suffering RIF patient. Many doctors have a lot to learn about real empathy.
My heart goes to all of the RIF victims. Nothing but being through this compares. I personally was blessed with twin pregnancy after ICSI nr 3, 6 transfers and one miscarriage and now i shiver before every scan in case it is bad news again. The 5 years of meds, retrievals and transfers left us so traumatised we cut off most social ties. After miscarriage I was determined to kill myself and suffered so badly I started cutting myself to relieve the emotional pain. The last 5 years of ART were pure hell. Unaffected people will not understand, much like we probably don’t understand the unique hell of having cancer, mental illness, a disabled child or one of countless heartbreaking conditions that plague humanity. I wish all ART patients endurance and luck as this is what a lot of ART comes down to.
I am so sorry for all of your pain but thank you for bravely sharing it. I believe speaking out about these experiences is an important part of getting the trauma of infertility recognized. True, unaffected people will not understand, but I do look forward to the day when they are more acknowledging and respectful of the life crisis of infertility.