Ohio Association of Genetic Counselors Infertility #WhatIWantYouToKnow About Infertility

#WhatIWantYouToKnow About Infertility

Sheila Johal, MS CGC
Sheila Johal, MS CGC

Sheila Johal is the manager of the PGT-M genetic counseling team at CooperGenomics. She also provides genetic counseling to patients seeking preimplantation genetic testing. She came to CooperGenomics after more than nine years at MetroHealth Medical Center in Cleveland, Ohio, where she provided prenatal, general, and cardiovascular genetic counseling. Sheila graduated with a master’s degree in Medical and Molecular Genetics with a focus in Genetic Counseling from Indiana University – Purdue University Indianapolis in 2006. Prior to attending graduate school, she also received a Bachelor of Science in Biology and a Bachelor of Arts in Psychology from Kent State University. She has a specific interest in disorders of hemoglobin, CFTR-related infertility, and is passionate about educating genetic counseling students. She currently serves as co-chair of the OAGC Web Design Subcommittee. When she is not working, Sheila enjoys being with her husband and children, listening to baseball on the radio, baking, and reading.

April is here! Finally, we are welcoming sunshine, warmer weather, and blooming flowers. Springtime also conjures images of new life; babies, of the animal and human variety, are seemingly everywhere you look. For those dealing with infertility, this imagery may be more painful than joyful. Perhaps this is also why April is home to National Infertility Awareness Week (NIAW). This year, NIAW takes place April 18-24th. One of the hashtags this year is #WhatIWantYoutoKnow. So, as a genetic counselor who works in the assisted reproductive technology field, and as an infertility patient (although I prefer the term infertility warrior), this is #WhatIWantYouToKnow about infertility.

Infertility is Common

The first thing you read in almost any article about infertility is how common it is. It bears repeating – 1/8 couples will experience infertility1. This means you almost certainly know someone who has struggled with infertility; they just may not have disclosed it. Some of your patients have also experienced infertility. You may not have known, but perhaps some of them were on their journey when they met with you.  

Infertility is Painful

Painful is an insufficient descriptor. Receiving a diagnosis of infertility leaves you broken and grieving. Being told you may never achieve what seems to come so easily to everyone else around you (at least it seems like everyone else around you) affects you viscerally and in ways you may never expect. The most well-intentioned family members and friends are ill equipped to comfort you; most won’t know how. Even medical providers may compound the feelings of grief and inadequacy with questions like, “No kids yet?” or “Just the one kid, huh?”  

It affects women and men

Too often, infertility is seen as a “female issue,” and the male contribution is overlooked. However, in couples diagnosed with infertility, about 1/3 of cases are the result of female infertility, 1/3 of cases are the result of male infertility, and 1/3 of cases are a combination of male and female infertility or have an unknown cause1

Just as importantly, the emotional impact of infertility on men may go unnoticed. When infertility is discussed the focus is overwhelmingly on the female patient. However, men are also affected by the feelings of sadness and grief that accompany a diagnosis of infertility. While they may process these emotions differently than their female partners, their feelings should not be dismissed. 

Infertility is Expensive

While you are navigating the explosive emotions that come with a diagnosis of infertility, you also get a crash course in financial planning. Infertility evaluations and treatments are expensive and are not always covered by insurance. Currently, only 19 states have some form of mandated infertility coverage. These state laws vary widely in their scope, with some requiring coverage only for the tests needed to diagnose infertility, and others mandating coverage of treatment procedures, including in vitro fertilization (IVF). Depending on where you live, a single IVF cycle may cost more than $15,000, and the majority of patients need more than one cycle to be successful. For a lot of couples, the cost determines if they will pursue IVF at all, how many times they will cycle, and when they stop treatment. 

Genetic counselors can help

As genetic counselors, we are in a unique position to educate our physician and nurse colleagues. We know genetics plays a role in infertility; we must continue to educate about the role of genetic testing, genetic evaluation, and genetic counseling in the infertility space. When a genetic reason for infertility is identified, it may help guide treatment decisions, it may bring to light previously unknown reproductive risk, and it often provides a sense of closure to the couple searching for answers. 

We must also continue to advocate for our patients; no one is better suited for this than genetic counselors. Let’s continue to normalize patient first language (a woman/man diagnosed with infertility, not an infertile woman/man) and let’s be cognizant of how we elicit a family history of infertility. When a patient reports a family member who does not have children, if that information is not relevant to your session, try not asking a follow-up question. If it is relevant, try asking, “Do you know if he/she was diagnosed with infertility?” rather than, “Was that by choice?” Your patient will likely be able to answer the former (yes, no, I don’t know); they may not have an accurate answer to the latter.

You do not need to have experienced infertility or know someone who is experiencing infertility to be supportive. Be cognizant of the types of questions you ask – of your patients and of your family and friends. Be mindful of the language used to describe infertility. Never make assumptions about a person’s family status. You may never know how many people’s infertility journeys you have made easier by doing so. #ThisIsWhatIWantYouToKnow

References

Chandra, A., Copen, C.E., & Stephen, E.H. (2013). Infertility and Impaired Fecundity in the United States, 1982-2010: Data From the National Survey of Family Growth. National Health Statistics Reports, 67, 1-19. 

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