It’s a Hush, Hush Word…Infertility

SHHHHHHHH…..I’ve got INFERTILITY ISSUES! People put autism puzzle stickers and breast cancer survivor stickers on their cars, but I have yet to see an “Infertile Couple” awareness sticker. Is the diagnosis of infertility any less of a diagnosis? Insurance companies lead us to believe this by their lack of coverage for medically necessary infertility services (a blog for another day).  Although infertility may not be life threatening like breast cancer, it is a painful and limiting condition that profoundly impacts many lives.NEW YORK - MAY 24: Actress Sarah Jessica Parker attends the prem

I assume that the stigma of infertility in part stems from the fact that SEX is broken. Who wants to admit that their sex doesn’t “work”? And, although Sarah Jessica Parker may have normalized talking about explicit sex over the dinner table, many of us don’t want to share the intimacies of our relationship with friends, let alone strangers. In my mind, one of the beauties of intimacy is that it is something shared just between my husband and me. And, although I don’t shy away from joking about sex with friends now and then, I don’t make it a habit to share what I do in private. Talking with girl friends about periods, child-birth, and boobs is no big deal. But, infertility doesn’t naturally or comfortably fall into that “normal” girl talk.

Our culture is inundated with sexuality, but the idealized kind filled with Victoria’s Secret Angels, Tatum Channing physiques, and Ryan Gosling charm (okay, and physique!) Infertility is poor performing sexuality. Who wants to talk about that? Not men, and not most women. No, men hate bringing up (sorry for my choice of words here) their struggles with erectile dysfunction. Most aren’t even able to verbalize their complaint. Instead, they just point at their crotch and stutter, “I can’t, umm,” followed by a fill in the blank. And, in the past 15 years I have only had one woman come to me concerned over her lack of orgasmic ability.Lovers

Thus, infertility falls into the hush, hush sensitive topic category. It is sensitive, but the shame and stigma associated with it prevent women and men struggling with infertility from getting the resources and support that they need. Breast cancer used to have a similar stigma associated with it. Women should not openly talk about their breasts! How improper! Yes, it was cancer, but the “unmentionable” kind. Thankfully, the shame that used to accompany the diagnosis of breast cancer has been diminished due to proactive campaigns encouraging and empowering us to embrace our womanhood, “feel our boobies,” and kick cancer in the butt. This change in culture has led to life saving advancements in breast cancer research and treatments.

Can a similar cultural revolution transform how infertility is viewed? Yes, but only if people are willing to step outside of their comfort zones. If thirty year olds still refer to their genitalia as their “junk,” how are we going to have a real conversation about infertility. Using real words and talking about real life problems is a good starting place. Acknowledging that the human body often fails us, and that infertility is one of these physical and biologic failures that is out of our control, lessens the stigma, even if slightly. Normalizing the idea that infertility is incredibly common may also empower men and women to open up more readily about their struggle toward parenthood. The more that people talk about this culturally uncomfortable issue, the less uncomfortable it will become.Group of multiethnic babies crawling isolated on white backgroun

Reducing the stigma of infertility will positively and powerfully impact the infertility world. Infertile couples will have a larger support system if more people are willing to share their stories. This in turn will lead to increased social networks and social capital. With increased unity focused on the cause of infertility, more money will be raised for research, leading to improved infertility treatment options. Awareness campaigns may lead to political activism, forcing insurance companies to take infertility seriously and cover necessary treatments. Imagine a world where people have increased fertility because of improved infertility treatments and insurance coverage! If population control is your thing, then this may not excite you. But, for those of us hoping to add to the human race, this thought is utopia!

From The Mom in Me, MD

 

Our Infertility Journey (1.6): Time to Tell Someone Our Secret

I wrestled with idea of sharing our infertility struggle with others. At times I wanted to shout it from the top of the Empire State Building. My whole world now revolved around trying to make a baby the unnatural way. I needed support. I needed prayer. I needed encouragement. I needed an army of shoulders to lean on.

I was hesitant to share this part of my life with even my closest friends and family. Saying out loud that we couldn’t get pregnant and that IVF was our only option for biological children somehow felt like confessing a deep dark secret. How would I even start the conversation? What would they think? Would they look at me differently? Would they pity me? I didn’t want their pity. I didn’t want their opinions.

I mustered up the courage to tell my best friend from childhood first. It’s strange how sometimes talking to someone other than family is easier. Actually, telling a stranger probably would have been the easiest! As children, teenagers, and young adults, Renee and I had always shared our secrets, our struggles, and our dreams. She felt like a safe place to start. I knew that she wouldn’t judge. She wouldn’t try to fix me. She would listen and she would keep my struggle to herself. For now, that’s what I needed…someone to safeguard my broken, yet hopeful heart.Sad woman is talking to the phone in bad, in home.

Next up was my family and Dave’s. I started with my sister first. Her reaction was marked with intense emotion. I could even hear her tearing up on the phone. Somehow, I felt the need to comfort her…to tell her that everything was going to be fine. Funny how the patient role often makes you the comforter. My sister’s second reaction was to ask if Dave had done something to cause this-as though a spell of infidelity had made him infertile! I reassured her that Dave was a model husband, and nothing that he had done had caused our situation. In fact, all of his tests had come back normal…no genetic anomalies, no autoimmune anomalies, normal testosterone levels…nothing to explain his scarce supply of sperm. Although I call his supply scarce, Dave would chime in that he still has millions of sperm… just not millions enough!

After telling my sister, I moved onto my parents. In the process of telling them our situation, I also had to educate them on In Vitro Fertilization. I was glad that they didn’t know that much already because some circles have distorted IVF, making it into something bizarre and immoral. IVF babies are not test tube babies. To be specific, they are petri dish babies. In the past, IVF may have been used irresponsibly, but most states and infertility clinics now have regulations regarding how many embryos they will transfer and what will be done with embryos that do not survive. The lab at our medical center was very conservative. We were not throwing away viable embryos, nor were we transferring excessive numbers of embryos at one time.

My parents were fine with the idea of IVF if that was our only option. However, my mother questioned our timing. She was concerned about the effect the medications might have on my body and my emotions. She was also concerned about my support system. Dave was working insane hours as a surgery resident, and I didn’t have any family closer than 10 hours away. Although her points were valid, I felt my frustration rising as I listened to her suggestions over the phone. Shouldn’t I wait until Dave finished residency? Shouldn’t I consider other options?

“NO!” I firmly replied. I was doing this on my own time table. I had already waited for years to have a baby. No timing was ever going to be ideal. I didn’t have the luxury of time…my fertility clock was ticking. Who knew how long it would take us to get pregnant! What if we never got pregnant and instead decided to adopt. That process could take forever as well!Empty Swings 2

My mother innocently started dishing out advice. “You need more rest. You need to make sure that you are taking all of the right vitamins. You need…You need…” I love my mother, and I value her advice, but what I really needed was to feel that I was in control of an out of control situation. What I needed was to have baby…yesterday. I knew that I was overly sensitive, but I felt entitled to my emotions. I asked my mother to support me and love me through this, but not to give me advice. I had never said anything like that to her before, but that was what I needed. I think that she was slightly taken back, but she respected my request (which I’m sure wouldn’t have been easy for any mother).

I asked Dave to tell his family the bad news. His mother knew more about IVF than my family had. Her education had come from watching The Giuliana and Bill reality TV show on the Style Network. I think that it was difficult for Dave’s mom that our infertility was his “fault”. On several occasions she asked if I could also be part of the problem. This may be me reading into the situation, but I assume no parent ever wants something to be wrong with their child. Since my workup had been normal, I told her that it was actually a good thing that we only had male factor infertility. Because Dave’s morphology and motility were both normal, we had a much better prognosis of getting pregnant with IVF.

Next, I decided to tell my friends who lived in our area, many of whom were in medicine or married to someone in medicine. I loved this group of girls. They became my adopted family for the years that we were in residency. To this day, we have all stayed in contact even though we have spread across the country. They were supportive, but none of them had first hand experience with IVF…yet. Only one had experienced infertility, but she was consumed with mothering her newly adopted baby. It was a little hard to fully relate when several of them had easily gotten pregnant within a few months of trying. They threw out suggestions such as getting away for the weekend, having less stress, etc. Although they were good intentioned, none of these suggestions were helpful. No amount of weekend get aways was going to change our situation.healthy middle aged woman doing fitness stretching outdoors

One of my coworkers had gone through infertility treatments several years prior. She became my mainstay of support. She understood much of what I was going through. My situation sounded pale in comparison to hers! Her only option for getting pregnant was IVF as well, but this was because she had been diagnosed with ovarian cancer at the age of 19. Because her ovaries had been removed, she needed an egg donor. Her sister generously volunteered, and my friend got pregnant on her first round of IVF. This gave me hope and a profound sense of support. Having a fellow infertility patient to confide in and lament with was incredibly therapeutic.

Out of necessity I told my boss and the office manager. I knew that my schedule would radically change with daily ultrasounds and frequent procedures. They were incredibly understanding and supportive. My manager had family members who had been through IVF cycles, and I also learned that another coworker had success with IVF on the first try…with twins…! Twins! Oh boy, two for the price of one was not my idea of a bargain.

I started to realize that although I felt alone, I was not alone. Many couples were struggling with infertility. Many weren’t talking about their struggles because of the stigma that infertility brings. But, those who were willing to open up about their struggles made my struggle just a little easier. Call me weak, but I needed a support system. Who doesn’t? I wanted to talk to someone without feeling shamed or embarrassed or broken. I wanted sympathy, but I didn’t want pity. Although my family and friends never knew the perfect things to say, knowing that they cared about my struggle was support in and of itself. I didn’t need them to say anything. Most of the time I needed to talk. I needed to vent. I needed to be hopeful, sad, mad, desperate. I needed to voice my frustration and my devastation. I needed advice free listeners.Vintage Women

I swore them all to secrecy. I entrusted my most precious struggle with them, and I asked them to handle it with discretion. I didn’t want everyone knowing my business. I was new to the world of infertility, and I didn’t like the label. The longer that I’ve worn it, it has become a little less scratchy. Clearly, I’m now sharing my story with the world!

From The Mom in Me, MD