IBD & Fertility: Let's Talk about Stigma

Now that I’ve shared my journey to motherhood, and talked about the emotional parallels between IBD and infertility, there’s another piece of overlap that I find critically important to discuss. I didn’t know about it until I began walking through it, but like IBD, conversations about fertility come with an associated stigma.

I was always very private about my IBD

As many IBD patients have probably experienced at one point or another, being open about the intimate details of Crohn’s disease or Ulcerative Colitis with family and friends may be challenging. I remember when I first became symptomatic, I tried to remain as vague as possible. Even though it was one of my main frustrations, I completely avoided the word diarrhea. I used to feel like it was too embarrassing to say out loud! Without being comfortable talking about how I was feeling, I became a much quieter, more introverted person during the first few years I was sick. I felt like my private life had to hold all of my secrets, and it became easier to put less and less out into the world.

Fertility is not often discussed

In the time my husband and I have been trying to conceive, I have realized how little fertility is discussed. Everyone celebrates pregnancy announcements and births, but in many circles, things like timed intercourse and tracking ovulation are not talked about. In my experience, when we were unable to conceive naturally, this divide in conversation became increasingly pronounced. Within a few months of our wedding, family and friends started asking when we were going to grow our family. I found myself saying open-ended and non-specific things like “we want to” or “it’s something we are hoping for.” It felt completely off limits to tell them that we were trying everything we could to conceive. I started to wonder why I was prohibiting myself from being honest, and I realized that I felt ashamed about failing to get pregnant on my own.

Parallel emotions

Similar to when I first began struggling with IBD, I felt like maybe our challenges with infertility could somehow be my fault. Although this is of course not the case for either situation, I realized I was feeling parallel emotions - embarrassment, frustration, fear. By not talking to my friends and family, I was re-creating the conditions that led me to fold up around myself years ago.

It wasn’t until we had been working with a Reproductive Endocrinologist and Infertility Specialist (REI) for quite some time before I began sharing anything with even my closest friends.

Each time we went through another cycle of IUI, each time I trudged through the two-week wait, and each time I found myself looking at another negative pregnancy test I realized that this journey should not be walked alone. It was becoming extremely difficult to ignore the things I was experiencing personally in my friendships and relationships. I thought about how the IBD community has offered me advice, resources, support, and even friendship over the last decade. I recognized that my heart needed that in relation to our infertility struggles as well.

Sharing has brought support

Recently, I have been sharing little bits here and there, and I have been overcome with the support that has come quite literally out of the woodwork for me. During National Infertility Awareness Week, I briefly posted about why conversation about infertility is important, about how 1 in 8 women/couples experience this and about how it’s more challenging than I ever imagined. Social media contacts I had not talked to in years sent me messages telling me that they got pregnant through IUI or IVF, and sharing words of wisdom and support in the same breaths. I cried so hard with relief as I realized that opening my heart to others made this journey feel so much lighter.

What I have learned is that whatever you are going through - whether it’s physically, mentally, emotionally, financially, or really in any other aspect of your life - I promise you, people you know have experienced it too. I know that opening up about things that hurt us is incredibly difficult. It’s something I’m sitting with right now as I write this. But, I can tell you that the healing that comes from sharing your burdens - it’s unparalleled. Living with IBD presents enough challenges for us. In my experience, being silent about it, about the way it impacts every part of our lives - it’s not worth it anymore. The idea of stigma only exists because we perpetuate it. If we each start with opening up in our own circles, with our own tribes, I have a strong feeling that stigmas may start to fade.

One last note. If your community doesn’t feel like a safe place to start, then start here. What is weighing on you, and how can I help? Please feel free to share below.