Understanding infertility and how to support those going through it ~By CN Board Member-Julie Potter Richt
start with the basic definition of the word because I think it is safe to say
we all know there are lots of “meanings” of infertility. According to the Office on Women’s Health
official website, infertility is defined as not being able to get pregnant
after one year of trying (or six months if a woman is 35 or older). Their definition also continues to say that
women who can get pregnant but are unable to stay pregnant may also be
infertile. This affects 10% of women in
the United States, which may seem like a low percentage, but in numbers…that’s
6.1 MILLION women.
My first go-round with infertility I was determined to be
open about our journey, talk about it with everyone to bring some normalization
to the topic. I also felt that if I
could beat anyone to that dreaded question, “when are you guys going to have
kids”, I could explain what was going on.
I was controlling the message, but really I was putting on a front about
being comfortable with infertility. At
that time, I had no self-awareness that it was only a defense mechanism.
Luckily, in our first experience we were able to identify the
issues at hand, create a plan, and got pregnant. Looking back now I laugh because, how easy
was that?!? I would read blogs and posts
online about other infertility journeys and it really brought perspective to my
world. There were many stories I read
that were absolutely devasting. I was
convinced that I really didn’t suffer from infertility because we didn’t “have
it that bad”. I considered us
“struggling to conceive”. I knew my
issues, knew how to address them, and was convinced that having kids was no
longer going to be a problem for us in the future.
Second time around…not so easy. I was unprepared for what was to come our
way. We started down the same path as the
last time, but after 4 months, we had to have a tough conversation with our
doctor about my numbers. Since trying 3
years prior, everything had changed for the worse. My FSH was low, estrogen was low, progesterone
was low, and I was facing a whole new set of infertility issues in addition to
my compromised cervix and fibroids – egg production & egg quality. All I needed was ONE good egg and I wasn’t
We did another 4 cycles with increased injectable medication,
but after 3 cysts and 4 more failed IUI’s, we were approached about moving to
the next step, which was IVF. We did
IVF, got pregnant, had a miscarriage, and ended up having to do two D&C’s
because they did not get all of the fetal tissue the first time. It was difficult and so much to process
within just a couple of months. Even
more so, it was difficult because we hadn’t told anyone we were doing IVF. My emotions were all over the place.
The openness of our fertility journey became so daunting to
me that I didn’t want to see people or socialize. I wanted to hide. I wanted to escape from others so that no one
could figure out I was hurting. I didn’t
want to let anyone know how much I was suffering emotionally. I wanted everyone to think that I was in
control of our infertility issues just like last time. I had lost control. I had lost myself in the process. I realized quickly, infertility was becoming
who I was. I let it define me. And then I let it control me. I let it take over all my decisions about
what social events to attend, what group of people I hung out with, when I
traveled, etc. It controlled everything.
It became too hard for me to talk to anyone about what I was
feeling and experiencing. I found a way to redirect the conversation to
anything else but “so…are you pregnant”.
There were so many times that I was not drinking, not working out,
eating differently, or super tired that threw people off and gave them an
indication that I could possibly be pregnant.
I wanted to be invisible until I could share good news. I was losing confidence in things working
out, hated admitting failure, felt judged and couldn’t tolerate people’s
insensitive comments anymore.
I know that my friends and family knew we were trying, but weren’t
always sure what to ask, how to support us, and what was (or was not)
appropriate to ask. Here’s a little
perspective to understanding infertility and how to be a supporter…
Be there as a listener.
That support alone allows for them to release pent up emotions,
thoughts, and questions they just may need to sort out. Let them open up to you without feeling a
sense of discomfort or judgment. Part of
the experience is telling “your” story.
It is a long road and one day is a high and the next is a low. As someone going through it, you don’t always
know what that day will unfold, so it is a reactionary process and hard to
control your emotions as you hear any news.
So as a supporter, hear them out.
Let them speak out their frustrations, goals, dreams, and plan of
Understand that they are not coming to you to solve their problem. When they are struggling, it is natural to
want to help them or provide them with answers to their unwavering
questions. However, when sitting in the
other seat, it comes off as trying to minimize their feelings of helplessness
or that you are not hearing them by
trying to provide them with solutions.
Knowing full well that is not your intention, it just feels defeating to
have those conversations with people that go right to solutions based on other
people’s experiences or simplifying your situation. Rather than directing the conversation to a
solution, let them guide the conversation and come to their own conclusions. Support the plan, no matter what it may be,
and provide alternative thoughts or solutions if input is asked for. My advice is focus on helping them feel good
about making smaller decisions or help them manage outside stressors. Making a meal is simple and one of the best
stressors to take off their plate. Help
them to not to think about other daily life issues while going through it
Recognize the uniqueness of their experience. There are no two infertility experiences that
are the same. When you’re going through
it, you don’t want to be compared to another person’s story. Doctors already make you feel like a “number”
when trying to identify key factors or issues.
When you are telling your story to a friend or family member, you just
want them to hear out your experience and again allow for processing to
occur. Each person’s experience will be
defined by what they find difficult, which may not necessarily be the same
difficulty for another person. Just
remain open to their experience and hear their story. Let them work through their perspective of
things and offer support with questions about how they are feeling or what they
think are next steps.
Be cautious of triggering language.
There are certain cliché statements that can be upsetting to any
fertility patient. People that have
never gone through infertility and easily get pregnant don’t get it. Plain and simple, you don’t get it. Common phrases like:
“Just relax. It will
happen if you aren’t stressed out about it”
“It will happen if it is meant to happen”
“At least you have one kid”
“Just be thankful for what you have”
“It might not take as long as you think”
“I know someone who had issues…and now they have twins”
“You’re overthinking things”
“You can’t think like that”
We know your intentions are
good. However, in that moment of
self-discovery or venting, it’s hard to not assume your point is that stress
level is to blame or that timing
solves the problem. It minimizes their
feelings and makes them feel like they cannot talk to you about these issues
because you’re not hearing them out –
you’re trying to make them feel better, but it just feels worse. Keep in mind that that best way for you to be
there for someone is to open the window to the conversation and let them run
with it. “How are you doing today”; “I’m
thinking of you”; “Let me know if you need to talk”; “Any new updates to
share”. Checking in on your
friend/family member is important and you don’t want to be worried about saying
“the wrong thing”, so just hear them out.
Give them space if needed.
It gets dark…really dark sometimes.
Month after month of failure, rejection, false hopes, and tedious
medical intervention is exhausting.
Sometimes all they need is space.
Text them, write them a card, but they don’t want to talk about it
anymore, nor do they want to socialize with others and their beautiful, perfect
kids. I know this sounds cliché as well,
but it isn’t “you…it’s them”. They know
that they will not be emotionally able to handle one more pregnancy
announcement or celebrate someone getting married, which means they will be
getting pregnant soon. The best advice I
would give anyone going through it – remove yourself from the situations that
make you feel less than or do not lift you up in a positive way. As a supporter, don’t abandon them necessarily. Rather invite them but let them know you
understand this isn’t their scene and it’s okay to not come. You can be empathetic for them while also
giving them an easy out of attending certain events that might be for them to
handle understandingly so.
Optimism vs Realism. There is a
difference. Being unequivocally
optimistic makes it seem like you are not grasping the reality of the
situation. Anyone going through
infertility is preparing for unbearable news at any time. They are preparing their minds and bodies for
trauma to attack. And the news isn’t
something you grieve for months or years.
You have to deal with that pile of trauma for the rest of your
life. It wasn’t your choice to not have
kids. It’s a long grieving process. So, we prepare, mentally. But realism is there to ground us in our
perspective. We know that many of the
feelings are only for a moment in time. We
realize that this may come to a screeching halt with one simple phone
call. We also prepare for the surprised
reaction of good news if we should be so lucky to receive it. Trust me when I say, we play out both sides
of that scenario in our heads ALL the time.
Do we have hope – of course! We
wouldn’t be shooting ourselves with needles for 10-14 days a month to have a
shot at getting pregnant if we didn’t have hope. They are coming to you to for support. Ask specific questions about some of the
details you may know will help focus them on what they can control. Or give them praise and confidence for why
they are doing this in the first place.
Remind them that it will all be worth it in the end. “The lengths you are going to in order to
have a family is commendable”. “You’re
one of the strongest people I know”.
Build them up!