Two Ways to Flip the Script for Infertility - National Infertility Awareness Week 2018

By Steven Mavros

It was around this time last year that I started taking the concept of infertility awareness to heart, and started a podcast to help shine a light on the struggles that I’d seen my patients endure.  Once I put it out in the world I began to find a world out there of others doing the same. What has been a silent struggle is becoming a lot less so and that’s a wonderful thing. 

Over the last year it appears the world is waking up to the 1 in 8 - those who’ve tried to conceive a child but find they cannot.  The media is alive with stories. Gabrielle Union discussed how she’s almost lost count of the 8 or 9 miscarriages she’s had.  Documentaries like One More Shot and Vegas Baby are giving you a direct view into couple’s lives as they struggle.  The show Friends From College had an entire episode showing the ardor of IVF injections, and just how crazy it can make you.  Even the Upright Citizens Brigade introduced a taste of improv comedy to the struggle. 

This year’s theme for National Infertility Awareness Week is #FlipTheScript and it couldn’t come at a better time – never before have women’s voices been so amplified to bring about change in how they’re treated and perceived. It’s not just women either – men’s experience with infertility is coming to the forefront as well. Just recently, my podcast interview with a young man dealing with infertility was covered by Main Line Today, further depleting the stigma that it’s something that just happens to women. The women and men who know the pain of this experience have attempted to flip the script for a long time, and it seems as though the world may finally be ready to really look at, deal with, and support those have to endure the agony of waiting for their babies.  

But how DO we #FlipTheScript? There are two things I believe need immediate change: First, we as both the public and providers, need to listen to women.  There’s more and more evidence that women’s complaints, especially of physical and mental symptoms, are more often ignored and given less weight.  Too often, the advice they are given can be downright patronizing. It’s implied that it’s either not important or it’s somehow their fault. I admit that even I have struggled with this as a provider at times, especially when someone presents a problem that I can’t figure out or don’t understand. In my own ignorance, I try to come up with what it is they’ve done to cause this, as opposed to grounding my thoughts in the fact that this is happening to them in spite of anything they’ve done. And it’s not just from male providers. Research has shown this can be true even when the person listening is a woman.  

Women most often get ignored when it comes to pain and discomfort, especially in the realm of their menstrual cycle. In the fertility world, this can be a huge detriment to their future fertility.  This leads to missed diagnoses of problems like endometriosis, polycystic ovarian syndrome, fibroids and more. It happens even to the strongest and the famous. Serena Williams, someone I certainly perceive as a powerful woman and possibly the greatest athlete around, had to fight for her providers to listen to her symptoms after she delivered her daughter.  If she hadn’t been so insistent, they would have missed possibly deadly blood clots in her lungs because her providers thought she was just ‘confused’ after birth.  

Second, for the women and men who are struggling, is control, and the notion that you have none. Infertility presents a huge problem in that so little of what happens with your hormones and reproductive system is something you can control.  On your own you can’t control when your body ovulates, when or if you’ll get your period, whether you were born with sperm, whether your ovaries are producing ‘good’ eggs, how many eggs you have left … you get the picture. Yet there are things you can control, and they can make all the difference both in your outcomes and what that outcome means to you. 

You can control your team; from your fertility specialist to which friends or family are going to be with through it all.  Don’t like your doctor? Get a second opinion. Think you’re alone in this? You’re absolutely not. 1 in 8 who’ve tried to conceive have had trouble just like you. 1 in 4 who’ve been pregnant know what it’s like to have a miscarriage. If you talk to enough people in your world, you’ll probably find someone who’s been where you are.  If you can’t, go online and there’s an entire world of women and men who have.  You can find a mentor who’s gone through exactly what you have or a support group to be part of a cohort going through it with you. You can find a therapist or an acupuncturist to help your body and mind process all the things you have to decide and go through.  You can make time to meditate or practice mindfulness, even if it’s only five minutes a day. You can control what you put in your body, whether it’s medicine, supplements, food, caffeine or alcohol.  

One of the things that is certainly out of control is the cost of fertility treatments, but it doesn’t have to be. My home state of PA doesn’t have a mandate that insurers or employers cover fertility treatments but it doesn’t have to stay that way. Many medical decisions are made locally by state and it’s a lot easier to enact change locally. If you don’t have coverage in your state, pick up the phone and call your state representatives or governor. Tweet at them. Fax them.  An election is coming this year. If the person you’re talking to isn’t listening, help elect someone who will. 

Let this year be the one where we #flipthescript and change the way we look at and treat those who struggle with infertility.