Infertility Diagnoses and Peer Support Groups

empty crib with teddy bear due to secondary and primary infertilityWe all feel pain about infertility and fertility treatment. Modify that; most of us, at some point or another, do feel frustration, disappointment, fear and/or upset at one point or another after we realize that becoming pregnant and staying pregnant to deliver our baby is not coming easily.

 

Whether conception is elusive because of ovulation, uterine, tubal, male factor, PCOS (polycystic ovarian syndrome), endometriosis, diminished ovarian reserve or unexplained problems, the feelings are very similar and mainly, we get past the differences and see where we meet on common ground, especially in peer support groups.

 

I have spent decades proclaiming that pain is pain is pain is pain. What the reasons are, don’t really matter. If you have experienced pain, then you have the capacity to be empathetic because you know what pain feels like. The specific details don’t get in the way of relating to the other person or cause.

 

Why then does getting a group of people together who are experiencing similar problems work so well about finding support?

 

Because it’s comforting to speak with and be heard by others that truly get “it”. The specific “it” that you are hurting over. Peer support groups and professionally led support groups are an emotional relief because there is a group of someone’s who are addressing your flavor of pain, so to speak.

 

I have not been an advocate of separating out for specific reasons when it comes to infertility. Look back at my original list of reasons on why infertility is occurring. None of those specific problems prevent us from hearing about another’s pain about not conceiving. We don’t generally feel jealous or envious about another’s pain. Not generally. There are almost always sparks of “I wish” in groups. “I wish I had better health insurance; I wish I had started trying to conceive earlier; I wish I had a better support system; I wish I had more money for treatment.” There’s almost always a moment during a group where a participant feels that way. It does not seem to get in the way of offering and accepting support from one another. Even the acknowledgment of those feelings create an atmosphere of honesty that encourages digging deeper and offering more in a loving and genuine way.

 

Lately, there is an exception to this list of infertility diagnoses that has caused more of a rift than any others that I listed.

The Divide Between Secondary and Primary Infertility

That exception is secondary infertility. (Informal secondary infertility definition - having a child whether or not through fertility treatment and trying for another child.) My personal bias is that I have wanted to keep those women in our groups. That theirs is also a different “flavor” of pain, but pain nonetheless, requite with very specific aspects. And for the five years that Carrie Van Steen and I have run Ladies Night In, through Reproductive Medicine Associates of Connecticut (RMACT), we have excluded no one. Everyone has been welcome.

 

Mainly, that has worked over the years. Right now, it’s working less well.

 

The big, white elephant in the room with secondary infertility is this: there is a big, gaping chasm between “mommy” and “not mommy”. The fear that is present with those with primary infertility is that they will never be mommy.

 

Their reality is that they are not yet mommy’s. And their fear is that their dreams will not come true to become mommy’s. I know. I felt that. It is not an irrational fear either, unfortunately. Fertility treatment does not work for every single man or woman who seeks to have a child.

 

Not being a mommy is not the fear with those hoping for their next child. I am not in any way diminishing the pain that secondary infertility patients feel. Their hopes and dreams about having their precious babies have a sibling. Having the painful questions, often from that child, about why there is no baby brother or sister and that there might not be one. Being around other mommy’s and their pregnant bellies with no escape because you have a child in pre-school and absolutely have to be there. It can be awful. Painful. Hurtful. Please believe me when I say that I get it. It’s the reason that I didn’t want to separate people with secondary and primary infertility to begin with, many years ago.

 

And still. We recognize the privileges that our secondary infertility patients have. Holding their child. Putting them to bed. Singing a lullaby. Wiping away tears when necessary. Seeing them smile when they see you.

 

They are mommy’s.

 

Those of us with primary infertility are not. The resentment between members is more poignant and pointed when that is the dividing line rather than having a different diagnosis.

 

The conversations are different when you are already a mommy. The concerns are different. The pain has a different flavor. We want mommy’s to be able to discuss what they need to discuss. We just don’t want to do it at the expense of the women in the group who have not become mommy’s yet.

 

I’m rethinking my stance on this. Carrie and I are considering new models. It may very well be that we, RMACT, offer more specific groups so that discussions can happen more freely and openly.

 

Tell me. What do you think?

 

 

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Topics: secondary infertility, Support, Primary Infertility

Lisa Rosenthal

Lisa has over thirty years of experience in the fertility field. After her personal infertility journey, she felt dissatisfied with the lack of comprehensive services available to support her. She was determined to help others undergoing fertility treatment. Lisa has been with RMACT for eleven years and serves as Patient Advocate and the Strategic Content Lead.

Lisa is the teacher and founder of Fertile Yoga, a program designed to support men and women on their quest for their families through gentle movement and meditation.

Lisa’s true passion is supporting patients getting into treatment, being able to stay in treatment and staying whole and complete throughout the process. Lisa is also a Certified Grief Recovery Specialist, which is helpful in her work with fertility patients.

Her experience also includes working with RESOLVE: The National Infertility Association and The American Fertility Association (now Path2Parenthood), where she was Educational Coordinator, Conference Director and Assistant Executive Director.

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