Understanding infertility and how to support those going through it ~By CN Board Member-Julie Potter Richt

Infertility.  Let’s 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 producing it. 

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 attack. 

• 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 all. 

• 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!