How to Talk to an Infertility Survivor (and Actually Not Suck at It)

A tale of two lovely and informed people

It had become clear we needed some help. The year my husband and I lost our children and thus on the heels of spending $77,000 on NOT getting pregnant he also, with his partner, opened up his fifth restaurant. I know from the outside this reeks of glitz and glam and of fresh new beginnings. I would see it the same way, and being on the inside I’m aware that in the long run I may have nothing to complain about. Being able to invest in an asset is preferable to not being able to invest in one, I always remind myself.

The interim, however, is an entirely different story. The best case scenario long term interim of high stress, low profit margins, and average paychecks is nothing compared to the short term interim of not seeing my husband, an impeded and unpredictable cash flow, and having no control over when and if this all life consuming investment will sink or swim.

As the person in charge of finances in our household, I had been in sort of a pickle as of late. Growing up in a family of school teachers, their low risk – low return life style and mentality did nothing to prepare me for the high risk – hopefully eventually high return but who in the hell really knows restaurant world. And my husband’s third world agricultural background in rural El Salvador, though rich in many non – monetary ways, does not exactly supplement the situation. So I set us up to meet with a fee for service financial planner.

As I made my way through their thorough pre-appointment questionnaire, I quickly became overwhelmed. Some of the questions didn’t apply due to us being nutty restaurant people. But more so I was swept away by how widely infertility had impacted our financial lives, both present and future, and that as a result, there was no way around infertility playing a significant role in our upcoming meeting. Further proof, as if I needed any, that infertility really does effect everything and that the infertility experience couldn’t be farther from the miniscule compartmentalized blip on one’s radar screen most perceive it to be.

I was, in one way, stunned by all that we HAD been able to keep together throughout our unexpected infertility nightmare. We somehow, in spite of everything, found ourselves without credit card debt. In between my endometriosis diagnosis, surgery, and starting what turned out to be five rounds of IVF I had somehow managed to refinance our mortgage with an interest rate 2.375% lower than the original, and pay down our car loan ahead of schedule.

But then there’s the more painful side of reality. Having not a clue about the advisor we’d be meeting with, I delved, naked and scriptless as usual, into setting things up as well and clearly as I possibly could.

In regards to our complete lack of any savings whatsoever, I made sure to indicate that, due to the fact that health insurance still unfairly and unjustly does not cover the vast majority of medical expenses associated with the disease of infertility, we recently were forced to spend $77,000 on NOT getting pregnant. I knew I’d be in no mood to endure ANY lecture on the importance of an emergency savings account, being that the one we should have had was now in the hands of reproductive medicine, drug companies, and holistic practitioners.

I made sure to mention that since our future is in a heartbreaking state of flux as the future we thought we were going to have is now gone, we really don’t know what our financial goals are now. And that one of the reasons we were in need of help with our financial present was that as infertiles we had been in financial survival mode for the past four or so years and were thus concerned we were not seeing our current situation with a healthy semblance of clarity.

Strange thing about the world we live in is that basic things surrounding the raising of children qualify as major legitimate stressors, whereas enduring multiple fertility treatments to the end of losing one’s children qualifies as nothing. I live with a consistent level of disdainful fascination over the fact that, in our society, empty nests and having to finance college are considered significant, burdensome, assaulting and sympathy invoking rites of passage for life worn and weary middle agers, while losing one’s children altogether from infertility warrants only vacant “what are you so upset about” stares and impotent “well at least you can travel now” platitudes. I can assure you there are some days and situations where I know I am unwilling and even downright unable to wade through this martyr riddled swamp of blatant hypocrisy. And I knew that this was going to be one of them. Fortunately, damage control happens to be a forte of mine.

So, in one of the “do you have anything else to add” sections (oh boy, you bet I do), I went to work. Fearing a two hour meeting littered with callous and impertinent references to the financial struggles of people fortunate enough to have children and breezy mentions of all of the great things we can do with our childless lives now, I stated that, as infertility survivors grieving the loss of our children we would get much more out of a meeting where we don’t have to deal with constant references to what I like to call “fertile world problems”. Although we understand that other people find things like saving for college challenging, for us such things are losses we are currently grieving. Any efforts that could be made in this area would be helpful and much appreciated. I made sure to let her know I was looking forward to our meeting and thanked her for reading.

People’s experiences are what they are, and I don’t begrudge them that. I can’t argue with the fact that financing college would generally be a challenge and that adapting to an empty nest would be a noteworthy life transition. But oh how I wish that were my rodeo. And that I didn’t have to have my life wrapped up in grieving the fact that it isn’t. The truth is that, as an infertility survivor, I’ve dealt with such life extremes that my perception of what qualifies as a challenge now exists on a level that is drastically different from many of my fellow humans. I venture to say this is true for anyone who has experienced major loss and/or trauma. I don’t expect people to understand my exact perceptions. But, there are times when I observe it might be important to point out to others that my perceptions are different than the average person’s, and for good reason.

And as it turned out, she couldn’t have been lovelier.

Our financial planner was just plain cool. With a warm smile and seemingly boundless energy, she practically twitched with excitement as she began our session. And it didn’t hurt that she was into random interesting things like organic farming and baroque music. Though practical, her perspective on money also contained a unique depth that easefully encompassed the human aspect of one’s finances.

When our battle with infertility came up, I was able to partake in what is, unfortunately still, practically a miracle. She first expressed condolences for our loss, and very heartfelt ones at that. She indicated that she knew people who had gone through IVF, coming out of it both with and without children. Adoption was never mentioned in regards to me and my husband, that we had reached our end was never questioned.

If she didn’t have the unspoken understanding that a life crisis changes a person, she sure fooled me. She didn’t ask countless disconnected questions on well what do I want to do now and what was wrong with teaching flute lessons and what do I do with all of my “spare time” – as far as the fact I’m now faced with the colossal task of rebuilding my life, she just got it. I’m in the middle of a transition, destination unknown, and really why wouldn’t I be?

She was not dismissive of the amount of money we spent on trying to conceive. She did not tell miracle IVF stories. She mentioned her daughter, not illegal by any stretch, but didn’t go on and on as if we, after everything we’ve gone through, should have endless stores of jubilance for hearing about other people’s children.

The potential future financial positives of being child free were mentioned, but subtly, not with the usual “see you’re so lucky” inference that implies the dumbest line of thinking ever: That the possibility of a little extra financial freedom in our later years somehow makes up for the loss of our children. Financial comfort, should it come, is nothing to sneeze at. But as far as the losses we’ve suffered it’s like putting a band aid on a limb amputation.

It would be easy to think that she was spectacular with us because we were paying her. Not so fast. In my five years of experience, the general population’s inability to respond to the disease and life crisis of infertility trumps all levels of education, all kinds of life experience, high levels of sensitivity and empathy towards others, and every paid position that exists. I see no reason why this can’t change. However as of now, we could pay someone a billion dollars but if that person doesn’t get it their clueless lack of empathy would make for a miserable experience.

That the vacancy of societal acknowledgment and general social support for our loss and losses like ours causes me such angst has also bread in me much confusion. Especially in the presence of all of the “the only person you can control is yourself” running commentaries out there. The hard truth is that receiving compassion from others matters greatly.

The dividends from her response were palpable. I was able to, for once, focus on an important aspect of my life and future and picking up the pieces. I could be as I was without having to incessantly correct and redirect someone to what is important because they don’t realize they don’t get it, and without the instantaneous sting that comes with someone not finding our losses worthy. Resurrection of any kind after infertility is hard enough without having to attempt it while bearing witness to the fact others who should be assisting you are oblivious. I was able to solely attend to the important issue of finances without having to simultaneously exist in my usual parallel universe of disenfranchisement.

As my husband and I then decided to enjoy lunch together, in part to celebrate the fact our meeting didn’t suck and that we were actually able to participate in productive meaningful communication with another human for freaking once, I struggled to locate the verbiage for my all too rare feeling. “Holy crap. I feel like……..um, like…….a fucking human being! It’s weird” I mused to my husband in my usual crude eye rolling face twitching manner. In that moment, my existence actually felt like it made sense and I reveled in it.

In the end, I experienced something I’d like to and need to experience more often: The presence of empathy and acknowledgement. The absence of judgment and dismissive justifications. Seems like a simple enough formula, and even more of a sure thing in that a person doesn’t have to get it entirely right in order for it to still be immense in its effectiveness. Having been quite the infrequent recipient of such eloquence, I found myself in great awe of its beauty and skillful sweetness.

And then one day a few months later, it happened again!! Surprised to hear the voice of one of my former flute student’s moms on a voice message inquiring if I was available to play for an Easter service, I must admit my anticipation of calling her back was laced with some angst. The bulk of my flute teaching life took place prior to my trying to conceive life, so most people I worked for would naturally be wanting to know if I now have children since they knew me during my getting married and helping my husband open his first restaurant part of my life. Immersed in the swirling neurosis that comes from not really being able to prepare, I picked up my phone and dialed.

The conversation started out well, as I was excited to hear the update on my former student’s college and post college life.

And then my revelation that I’m not teaching anymore, followed by her deliciously appropriate “So what else have you been up to then?” Luxuriating in her verbal skillfulness and not specifically assaulted by the typical ultra-feminine dipthongy “Soooooooo……what about children?” charge, I felt a little more secure in divulging.

I filled her in on our infertility struggle and then held my breath. And then much to my delight, another what is sadly still practically a miracle. The conversation went well.

First, she expressed her condolences. Score! She then shared she had a cousin who went through infertility around twenty years ago. I still held my breath, ready for the usual IVF miracle success story, or the topic of adoption. And yes, it was the topic of adoption that came up, but it was raised and handled in – get this – AN APPROPRIATE MANNER. Her cousin had ended up adopting, was that something we thought we might do? Her response to my no and to my elaboration was gracious, non-argumentative, respectful and not a conversation killer. As all of us child free not by choice infertility survivors know, this is often where people just stop talking to us, throwing us into their mind’s eye trash heap of less than significant humans no longer pursuing parenthood.

She acknowledged how tough the IVF process had been on her loved one, and threw in one of my favorites, “I’m just so sorry you had to go through all of that.” Music to my ears. She didn’t pontificate on the benefits of not having children, and didn’t go on about hers, though I hope they are ok. If she’s a grandmother by now, she was polite enough to leave that revelation for a later date. And she wished me well with the rest of my life by reminding me that my students enjoyed me so anything I may end up doing with teaching would be successful. And it was such a re-enforcing reminder, as I embark on my new journey to remember that I so enjoyed my students too.

After hanging up, I found myself sitting rather dumbfounded on my couch, temporarily wrapped up in precious equanimity. My inner hand grabbed the auto pilot part of me that was ready to run out to get groceries. “No, just stay here awhile longer”, it said. And there I sat, awash with the rare comfort that comes from talking to a human who cares and who does not argue with the infertile reality. And even as I got into my car, I noticed a lump in my throat, a ball of relief that inhabited my voice space. It just felt so good, and a few tears of contentment were shed as I embarked on my food shopping.

No doubt these are two special ladies. But their “formula” for speaking to an infertility survivor is far from hard to emulate. As a matter of fact, it is fairly simple, and highly effective even if some of the points below are observed:

ACKNOWLEDGE

1) Acknowledge, acknowledge, acknowledge. “I’m sorry”, “I’m sorry for your loss”, “I’m so sorry you had to go through that”, “That’s so unfair”, anything that validates and does not dismiss what the person went through.

2) Acknowledge gently a quality or an ability the person has, as picking up the pieces of one’s life after infertility while grieving the loss of one’s children is a most daunting pilgrimage.

 

ACCEPT

3) Accept the person is at their end of trying to have children. Do this by taking their word for it, steer clear of “you never know a miracle might happen” or “just when you let it go is when it happens…” delusions. Believe me, those of us who can’t have children have a hard enough time accepting it ourselves, that LAST thing we need is to have it questioned by the outside world.  The end of one’s baby making attempts should be assessed by, and only by those who are privy to the details of one’s medical case.

4) Accept that losing one’s children to infertility is a traumatic grief involved experience for anyone who has to go through it. Do this by not delving into analysis as to why this is so hard for any particular person – losing one’s children to infertility is just unequivocally hard.

 

AVOID

(these women made me feel comfortable just as much by what they DIDN’T say)

5) Avoid bringing up adoption at all, or, avoid bringing it up in a way that implies it’s a simple mindless process (it’s anything BUT). Accept the person’s response whatever it is, no doubt they have done their research. And no doubt the path to their decision was both weighty and painstaking. Be mindful of the fact that adoption is not a cure for infertility.

6) Avoid trying to make it “ok”, whether it’s by painting a picture of the great child free life they will have, or with assurances that everything is “meant to be”. Though people who can’t have children do go on to have great lives, losing one’s children is never ok and there is nothing that exists that can void the natural grieving process.

7) When not knowing what someone’s child status is, avoid addressing the subject directly. If people have children, they will likely mention them. If they couldn’t, they may want to talk about it as much as you’d want to have a stitched wound ripped open. Ignorant lead ins such as “you must have kids by now” or “what about kids” omits the possibility of the trauma and grief that so often results from the pursuit of them.

7 thoughts on “How to Talk to an Infertility Survivor (and Actually Not Suck at It)

  1. I love that you found two people who get it. Or at least who did a great job of making you feel not shitty. These people are few and far between, but are true gems when you do find them. Being mindful definitely isn’t too much to ask.

    P.S.-Diphthong is one of my favorite (non-curse word) words in the English language! 🙂

    • It’s true – a little common courtesy and respect is definitely NOT too much to ask. They were both great examples of how to relate to people who are going through losses like that with which we deal.

      And I’ve been thinking about it – I think I prefer “ovarian asshattery” over diphthong. Just sayin.

  2. It’s nice to know there are empathetic people left in the world, isn’t it? Your “acknowledge/accept/avoid” points should be part of an infertility manual. 🙂

  3. This is so true. I have just gone through my last round of IVF and lost again. People so want to say the right thing and ‘fix’ things for you. I have already had the miracle comments, been asked ‘why’ it didn’t work? And I am sure the adoption comments and child free life comments are on there way. I understand why people do this but it really doesn’t help. The only person who understands is my husbands which makes it very isolating.

    • Hi Kate – I’m so sorry for your recent loss. Though I’ve come a distance in the 2.5 years since stopping treatments, I still struggle sometimes in a world not equipped to comprehend and accept that which cannot be fixed. That said, the shedding of my old needs for answers and reconciling “why” has brought me to quite an interesting place of being.

      As far as the miracle comments, people don’t stop to think how decimating living on slim chances can be, it is far from the romanticized tale it’s portrayed as. What we really need is to have our very real and valid pain honored, and our process forward accepted and abided with, not fixed or judged.

      Though I know it provides little comfort, know you are far from alone in your isolation.

      • Thank you so much for your words, I have started to send a disclaimer out to friends, about miracles and adoptions and for most part it has been really well received. Yes it is the feeling of judgement which is the hardest probably cause we judge ourself pls so harshly.

        Sent from my iPad

        >

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