I have infertility PTSD.
Among the reproductively challenged, it’s often said that “once an infertile, always an infertile.” You never quite shake off that label. In the last 6 years, I had surgery, went through 5 IVF retrievals and 4 transfers. I’ve been pregnant three times. I had a C-section and a VBAC.
I have two children. The oldest daughter is four, which means all of the trauma of my infertility experience should have been long over, starting with the moment I held my daughter in my arms.
All of the tests, shots, failed attempts feel like a lifetime ago. And yet, it’s all still there, hidden under the surface.
I have a close friend who is struggling with secondary infertility. She has been sharing her experience with me, updating me regularly. Along with all of her clinic appointments, she has been seeing a psychologist who specializes in infertility. She also recently attended a local infertility support group.
She is doing all the things I should have done. I don’t know why I never saw a therapist.
Someone suggested it to me, but I guess I thought I could handle what I was going through with my husband’s support. I dismissed a therapist as someone I just told my story and feelings to, but because I was so open about my infertility experience, I felt like I was venting my experience regularly anyway.
I visited some online forums, but was too depressed reading the barrage of stories of people experiencing infertility. I also thought an in-person support group would make me too sad. I couldn’t bear the idea of hearing all of these tragic stories of couples trying and failing over and over. I also worried about the successes. How could I cope with hearing happy news over and over when I had none of my own?
So I pushed through my own infertility experience, leaning heavily on my husband, family and friends. I especially relied on three friends who I call my infertility coaches. They all experienced infertility too and actually understood what I was going through.
I have made it a goal to return that favor, by continuing to be open about my experience and encouraging people to seek me out with questions or their own stories.
I tend to find other infertile people all over the place, and always offer to be a support system for them. People I know refer their friends and family to me. I have made it a mission to give back to the infertile community by offering as much support as I can.
So when my friend told me about her infertility support group, I offered to go with her. I’ve been slowly working on a novel about a group of people who meet in an infertility support group. The first part of the book is a fictionalized version of my experience, but most of the novel would follow the various group members as they face their personal journeys to parenthood.
And yet, I’d never been at a group. So partially, I wanted to go for the sake of research. But, of course, I also wanted to be there for my friend.
I knew the infertility group existed. While I never sought one out when we lived in Manhattan, I knew my PA clinic held meetings twice in month in two of their locations. However, when I was being treated there, I lived in Philly and worked in New Jersey, so making it to the suburbs for a 6 PM meeting just didn’t seem realistic.
My friend had to remind me what floor the office was on. It felt so strange walking down that hall and sitting in the reception area where the group met. For months, I went down that hall on a regular basis, stopping to give blood in the lab first and then heading to the main office for an appointment.
At 10 weeks pregnant with my first daughter, I graduated from the clinic and started seeing a regular OB. I took her back to meet the doctors when she was four or five months old. Not long after, my husband and I returned for a consultation on doing IVF again for our second. We did our initial tests there before I spontaneously got pregnant with my second. I blanked out a lot of that second set of visits. We did the tests in July, I was pregnant in August and had a few visits to make sure the baby was still growing. But I also had a busy one year old at home and hardly remembered those appointments.
So there I was, in the reception area where I spent so much of my old, pre-motherhood life; my trying-to-be-a-mother life.
The group was led by a social worker who had experienced infertility herself. There were three other women there, including my friend. One by one, we shared our stories. Hearing the first two stories was incredibly difficult. One woman had premature ovarian failure. She received donor eggs from her sister, had lost one pregnancy for no known reason and was now trying to decide what her next step was.
Another woman had such severe endometriosis that she had her fallopian tubes and ovaries removed. “All I have left is a uterus,” she stated. Both women were exploring all their options, from donated eggs to adoption. One woman was separated from her husband because he didn’t support reproductive technology due to religious reasons.
By the time it was my turn, my emotions were churning within me. I was nervous to share my story because of the happy ending. Would these women resent me for having had children? I was also heartbroken for them. There’s nothing like a support group for giving a little perspective. Both of these women had much worse diagnoses than I had had. They had no hopes of having a biological child. It was devastating to hear, but also amazing to see how strong they were. They kept trying. They were determined to be mothers, however that happened.
I began to speak, calmly and matter-of-factly sharing my story. I wasn’t very far in before I was overcome with emotion and started crying. I was shocked by my reaction. After all, it had been six years and I had my two wonderful daughters. I had that happy ending that the other women were still fighting for.
What was wrong with me?
Hearing other women’s stories definitely touched a nerve. I guess I had never really dealt properly with my feelings about that experience. Suddenly, in that room, it all flooded back.
Once an infertile, always an infertile, I suppose.
Because the group was so small that night, we were able to chat a bit back and forth. One of the women said she was glad to hear my story since I also had endometriosis. The other woman confessed that when she did finally get pregnant, she was scared she wouldn’t be able to relax and enjoy it. Having had that experience, I confessed that it was very difficult to enjoy a pregnancy, but that with each milestone, you can take a small breath and slowly the infertility experience seems further and further away.
And yet, my very presence in the room and emotional breakdown revealed that it’s never fully gone. Still, at the end of the group, the social worker thanked me for coming. She said she hoped I’d return again because she felt that my experience was inspiration and would be hopeful for other families to hear. The women in the room echoed her invitation.
It hit me that periodically attending this group could help me give back to the infertile community. Sharing my story would hopefully get easier over time and also offer hope to families who might need it. I’d be learning to process my experience, while helping others cope with their current journeys.
Leaving that room, I felt drained, but also filled with purpose. I may have infertility PTSD, but if sharing my story helps me to give back to the infertile community, I will keep telling it, no matter how many tears I shed along the way.