#Listen Up: Eight Ways to Support People Living With Infertility Now

With National Infertility Awareness Week on our door step, here are some ways friends, family, co-workers and community members alike can support the infertile community.

#1 HALT THE BABY MAKING MYTHS

Just relax and take a vacation. When you stop trying, it happens. It will happen when it’s meant to. Here, let me give you some sexual pointers……

Every person going through infertility has these falsehoods and many many more (nowhere near enough room here!) tossed their way.

It is rare people are comforted or even feel neutral in response to these proclamations.

In my first few years of trying to conceive, I had to pinch myself to realize I had not in fact been kidnapped and transported to a parallel medieval universe.

These myths marginalize and stigmatize people who are already suffering through no fault of their own. They don’t have to be in use, they only exist because we allow them to.

Instead, try:

“I’m so sorry for your loss/losses”

“You are amazingly strong”

“I can barely imagine what you must be going through”

“I’m sorry you have/you had to go through that”

“How can I/we support you right now?”

And if you hear the aforementioned myths spoken by others, feel free to address them. Just relax and take a vacation is not an appropriate response to someone’s medical condition, infertility or otherwise. There are boatloads of people who stopped trying only to have NOTHING happen – when it comes to pregnancy the placebo affect is not a thing. Very few if any people are comforted by the notion that their children aren’t meant to be. And the way a couple “does it” is not the cause of their infertility. That one sounds like a myth spawned from a junior high sex ed class, but yet it’s continuously spouted by full grown adults.

#2 KNOW THE NUMBERS

According to the CDC, 12% of women in the US between the ages of 15 and 44 will have difficulty or find it impossible to get and stay pregnant.

The World Health Organization’s revelatory research estimates that one in four couples in developing countries is affected by infertility.

Approximately one in every four pregnancies ends in a miscarriage.

One in every 160 births is a stillbirth in the US.

In 2012, 1.5 million assisted reproductive technology cycles were performed world wide. Approximately 1.1 million failed. This clocks treatments in at a global failure rate of almost 75%. The CDC reported the failure rate in the US in 2014 to be approximately 66%.

Close to 20% of the female population in the UNITED STATES (and in many other countries around the world) does not parent. This group includes those who are child free by choice, by circumstance (i.e. battling disease or not having met the right partner before the end of their fertile years) and child free due to infertility.

These numbers tell a story. These life altering experiences affect far too many to be extricated from the human conversation.

#3 LISTEN, LISTEN AND LISTEN

Just like people who go through any other life altering traumatic loss, people living with infertility and its related traumas need to be heard every bit as much as we need privacy. We need abidance, acceptance for wherever we are at and most of all empathy.

Judgements as well as attempts to fix and pathologize incite disconnection. So does un-solicited “advice” from those who haven’t been there. I’m no more qualified to tell someone who lost their spouse mid life or someone who is in the process of a gender transition how to be than is someone who received the privilege of living children qualified to tell me.

Sadly, normal emotional responses to experiencing infertility and loss are often dismissed as crazy, petty, selfish, exaggerated and misguided just to name a few.

Given the uprooting nature of reproductive crisis, coupled with society’s imposed gag order and the unimaginable emotions that are an inevitable part of any traumatic loss, an open human ear and heart is a most powerful and precious offering.

#4 HAVE A REALISTIC VIEW OF ADOPTION

Nothing says “I completely do not acknowledge your pain” quite like “Why don’t you just adopt?” This statement also succeeds at minimizing the unique challenges and positions that can arise in being an adoptive parent and child.

Of all of the things said to those of us in the throws of repeated failed treatments or natural cycles, recurrent pregnancy loss and especially in the face of involuntary childlessness, this is hands down the most aggravating.  Like the realities of human reproduction, adoption is also veiled in many a misconception.

First, please know adoption is not a solution, nor is it a cure for infertility.  It’s adoption.

Adoption is expensive, somewhere in the range $40,000. Not everyone can afford such a price tag, especially on the heels of costly fertility treatments.

These days, the demand in the adoption business far out weighs the supply. Getting chosen by a birth parent is not guaranteed, for a couple in their forties wanting a semi open adoption it is unlikely.

Involving a third party is not the right thing for every family. Open adoption, which is what is currently promoted, allows for the birth family to have a level of presence in the child’s life.

Most international adoption programs have folded – for political reasons and due to corrupt and unethical practices.

The desire for a biological child is a universal feeling that should not be shunned. If it weren’t, then obviously more fertile people would adopt.

People who try for biological children and can’t have them need to grieve regardless of what they do or don’t go on to do. Not everyone feels right about entangling an innocent child in their grieving process, not everyone is through their rougher stages of grief in time to meet adoption agency age requirements (many have a 45 year old age limit).

There are many who are not in a position to take on children with special needs. Especially those of us coming out of multiple reproductive losses, as we are often traumatized and in need of care ourselves.

#5 RESPECT THE GRIEVING PROCESS

Dr. Alan Wolfelt aptly defines grief as “what we think and feel inside when we lose something or someone we value”. Any reproductive loss will result in some sort of grieving process, whether the person is consciously aware of it or not.

Mourning, the outward expression of grief, is essential to the healing process. Outward expressions of grief should not only to be tolerated, but encouraged and supported.

So many friends and loved ones are biding their time, waiting for the person who went through the crisis to return to normal. There really is no such thing, there is only moving forward, as trauma and loss have the capacity to fundamentally change people. Generally speaking, the greater the depth and breadth of the loss, the more dramatic the personal changes. The acceptance of friends and loved ones are needed as the person moves through numbness, pain, building a new life and a search for new meaning.

Those who are willing and able to grieve in a way that is healthy will work to integrate their losses into the fabric of their lives and being. Some forms of this are writing, activism, volunteer work and starting a charity or other organization. Friends and loved ones taking an interest in and supporting these things make the griever feel less isolated and alone.

Supporting ritual is also important, especially since most of us in the infertility/pregnancy loss community have to create our own rituals. Very few, if any, formal ones exist. I myself planted a white garden surrounding the burial site of the photos of our 24 beautiful embryos. And on the anniversary of the loss of our children (in January, the height of non gardening season) my husband and I buy white flowers and light 24 white candles. I love it when people accept these things into the conversation and take an interest, but it’s rare.

#6 SET REASONABLE SOCIAL EXPECTATIONS

For those of us living with and/or coming to terms with our infertility, observing the normalcies of daily life can be very painful. We are bombarded with emotions we never could have imagined existed, all of which are normal. The perpetual nature of trauma and loss we endure is not to be underestimated. We are constantly surrounded by that which we just lost, or in many cases, can’t have ever.

One study of women who had endured repeated failed fertility treatments found almost half of its participants with a diagnosable rate of PTSD. All of this while society’s social expectations to respect, empathize and abide with these experiences seem dead set at zero.

More often than not, people living with infertility and involuntary childlessness do suffer frayed relationships and family disconnection when they step up to take care of their mental and emotional health.

Abidance and support from others in coping with and avoiding certain social situations is both helpful and necessary.

Let’s take the good ole baby shower, for example. Not attending a baby shower in the midst of fertility treatments, following a stillbirth or in a life of unexpected involuntary childlessness is an act of compassionate self care by any sane measure. And yet, people are harshly judged and admonished for doing “such a thing”. If whether or not your loved one attends a baby shower is more important to you than their physical, mental and emotional well being, something is very very wrong.

Respect for one’s need to emotionally self protect in the face of the crisis of infertility makes a huge difference for the better.

The bottom line: We see the world through the lens of our experiences. When it comes to human reproduction people have many different experiences, so we need to adjust our expectations accordingly to what those struggling with fertility issues may need. I may not, for example, be able to swoon over a friend’s pregnancy in the same way as her fertile friends, and that’s ok. I am however, incredibly well equipped to be present in the face of unexpected loss.

#7 PRACTICE INCLUSION IN THE HUMAN CONVERSATION

I’m struck every day by how much of the human conversation is wrapped up in parenthood related themes. There are plenty of people who don’t share this reality, many of whom worked incredibly hard to have it.

The human conversation is currently driven by the following assumptions:

1) Anyone who wants kids can have them
2) There is little trauma or loss involved in the path to parenthood
3) All people without children didn’t want them

The human conversation clearly has a problem. None of the above is true.

The invasive “When are you going to have kids?” question has reduced me to rageful tears on a few occasions.

The seemingly innocent “Do you have kids?” question is a landmine in disguise. People who ask this often seem blatantly dysfunctional in their ability to conversationally switch gears. My answer of “no” is typically met with befuddled, cross eyed silence at least, or the rude prompt of “soon?” or the even ruder assertion of “why not?” If someone is only prepared for the answer of yes, it leaves me thinking they really should not have asked the question in the first place.  Upon answering “no” to this question I’ve even had people not say a word, turn their back on me and start talking to someone else.

The “Do you have kids” question is maddening because it is dripping in irony – it is capable of evoking much unnecessary pain while being, in most cases, entirely unnecessary to ask in the first place. Since when has someone with kids not talked about them ever?

The above questions are exclusionary. They allow little room for experiences other than easily procured parenthood. I often wonder how much better things would be if people stopped for a second to think before speaking:

What if this person just had a miscarriage or has suffered repeated miscarriages?

What if this person is in the midst of a round of IVF right now?

What if this person tried to have children and couldn’t?

The numbers presented back in #2 show the chances of these things being the case are not so unlikely.

How might my mindless and unnecessary questions make people feel?

Inclusionary conversation involves listening and taking an interest when someone is sharing a different experience, such as struggles to conceive, carry to term, or involuntary childlessness. Inclusionary conversation allows others to take the lead on topics like having children. And inclusionary conversation moves away from topics to which the other party is not responding.

#8 HONOR THE CESSATION OF THE PURSUIT OF PARENTHOOD

As a survivor of infertility who is also involuntarily childless, for me this one carries a special importance.

Let’s start with some hard and important truths:

Alternative paths to parenthood are in many cases not feasible.

Some medical cases have such a low chance of “success” they are not worth the agony and financial investment of IVF.

In the pursuit of parenthood, people can run out of resources on all levels – it really is that hard.

At the end of our 4 years, one surgery and ten treatments my husband and I were shot mentally, physically, emotionally, financially and spiritually. There was nothing left in any tank and no reason to go on, the lack of reproductive technology’s success in our case was all-encompassing.

People who stop are often also finding themselves wanting to live again. This is a healthy thing that should be supported.

It is unfortunate that those who stop the pursuit of parenthood are often judged as having given up and not wanting it badly enough.  The infertile community itself can be one of the most ardent promoters of the “persistence always pays” illusion.

Exiting the pursuit of parenthood is typically met by others with attempts to fix (just adopt!), lectures on the importance of parenthood or the complete opposite – indifference. This position is made more torturous than it already is by absence of acceptance and acknowledgement that all too often meets it.

I was in one of these discussions once that ended rather nicely when the person to whom I was speaking validated me: “Either way, that must have been such a hard decision to make.” I thanked him for his empathy, as he totally nailed it.

Pursuing one’s dream of parenthood to the desired end result at all costs takes tenacity, no doubt. But so do plenty of other things.

Acknowledging the reality that one is at their breaking point takes strength. So does opting out of treatments all together. Walking away to rebuild a new life I hadn’t envisioned has hands down been the hardest part of my journey.

In this day and age of beloved “succeeding against all odds” stories, few want to hear that often times ceasing the pursuit of parenthood is the most reasonable and healthy thing to do. But in the infertility journey, this is where people need the most support.

14 thoughts on “#Listen Up: Eight Ways to Support People Living With Infertility Now

  1. Such a great list. You know you could have made it a series, and then you’d have had eight new blog posts? lol!!

    I particularly liked your list of adoption facts, and this – “… Not everyone feels right about entangling an innocent child in their grieving process.” For this reason, I know that a clear requirement of adoption here and in the UK (for example) is that all efforts to have biological children are over, and the worst of the grieving process is done.

    • Ha – I’m so not shrewd like that. Strange, because in the non-creative aspects of my life I can be incredibly efficient:-)

      For my husband and I, allowing ourselves our rightful grieving process was a necessity and we felt strongly the early parts of it did not create an appropriate environment for children. It’s interesting to know – I had forgotten – that this is actually mandatory in some places.

  2. #8 is a really good point. The number of people who feel they need to weigh in on our decision and give us advise has been surprising, especially when both of us aren’t quite on the same page yet (apparently very normal/common for couples going through this) – they don’t see that telling us they think we should keep trying isn’t actually supportive, and that it’s actually putting stress on us and our relationship!
    Great post, thanks 😊

    • May I take a wild guess that the people who are weighing in on your decision haven’t been in the position you’re in and have not had the experiences you’ve had? Very interesting and important point about the affect this has on couples who are in the process of merging onto the same page, or reconciling their different feelings, whatever the case may be. I can really see how that would cause more stress – thanks for sharing.

      Our biggest surprise/hurdle has been people not being able to imbibe the concept of OVER when it comes to having children and the pursuit of parenthood. I once expressed to someone that we had tried very hard to have children and couldn’t, and that this was and still is a very sad thing for us. He continued with “Well, WHEN it happens…” and I had to shut him down right there with “Like I said, it isn’t going to”. Then there’s the “I believe in miracles” crew. Either way, in my first couple years out of treatments I needed to be spending my energy trying to fathom and adjust to “over”, I did not need to be explaining the concept of over to full grown adults who didn’t have to go through it themselves. Ok, rant OVER:-)

      • Your wild guess is very accurate. And yes we’re having to explain OVER too…recently had someone say “but you could change your mind”. They didn’t seem to grasp that to cope with & heal from ‘over’ it needs to be ‘over’ not ‘maybe over’.
        I guess this all comes back to how society needs more conversations about this experience.

      • Absolutely, “maybe over” is an incredibly merciless place to be. I was unwittingly there for about a year after treatments due to the mere existence of my lovely menstrual cycle.

  3. This is profound!!!! This community, hell our global society, is long overdue for this list. Too often, the focus has been on comforting those outside looking in, sacrificing the mental, emotional and physical health of those living with infertility in the process. The harm that is done is as traumatic as the diagnosis. Which is why it needs to end. Recognition is just the start.

    Thank you for this.

    • Boy are we on similar pages! Great point about the focus being on those who are surrounding the person who is dealing. It reminds me of all of the people who expressed how hard it was for THEM when my good friend’s husband died unexpectedly. I felt some of those feelings too, but I sucked it up, took my flawed and misguided self and dealt with my feelings so I could be there for her because after all, her husband was dead and mine wasn’t!!

      I’ve also become more attuned to all of the commentary out there on the things we can do for ourselves, which is necessary, great and constructive on a level. Goodness knows we practically need a PHD in self care to get through this. I’ve noticed very little though in the way of what society and our loved ones can do to support us. As the support of humans is essential to the healing process, this component is every bit as crucial as what we do for ourselves. I’m preaching to the choir, I know.

  4. Just WOW! And THANK YOU. This is profound and insightful. I have been wondering for months whether I should include a section for family and friends on my blog – not for my own family/friends, obviously, but for anyone who is looking for guidance while their loved ones are going through infertility and loss. Because you see, some people are thoughtless, but others really want to support us. They just have no idea what behaviour would be helpful. So they say some things that only make it worse. Some education is needed very badly, and I admit that you are quite ahead of us here in Europe, at least in the German speaking area where I live!

    As to the concept of OVER (cf. comment above), my experience is quite similar. As to the miracle crew… I struggle for words as it seemed nearly impossible for me to find a good way of dealing with them. Some people really don’t seem to be able to accept that the pursuit of parenthood can take everything we have: our energy, health, money and even our marriage, if we are not careful. Yet, that pursuit may not end how we wish, and we may have to take care of what is left of us and our marriage. I love how you include the statistics – this adds relevance to all of this!

    I am bookmarking this and maybe – if you don’t mind – I might refer to it in the future by translating parts of your text into German for my readers (of course adding links to your blog). It really is such a wonderful, important post and the message is worth spreading! Greetings from Switzerland.

    • Hi Elaine –

      So glad this resonated and feel free to translate whatever sections you wish. I too am going to have a section on my blog, which I’m in the middle of re-working design wise, dedicated to how others can support us. I feel that we as a community need to expect and ask for more outside support and inclusion. Plus, the health of our healing process depends so greatly on the quality of support we receive.

      I wanted to link more sources to the statistics, maybe we can stay in touch regarding this.

      The miracle gang is a tough one, any rebuttal claiming that a pregnancy is not going to happen (I reminded someone once I have a scientific understanding of all we tried that didn’t work, while they don’t) is interpreted as negative, which is then chalked up as one possible (and mindless and entirely idiotic) reason I didn’t get pregnant. Other people’s aversions can be a real bitch!

      • Thank you, Sarah.
        Oh yes please, let’s stay in touch regarding the sources :-). I’ll let you know when I’m starting to translate your post!
        Take care!

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