Infertility: Resources for Family, Friends, and Practitioners

by Bethany Johnson and Margaret M. Quinlan

Hyperfertility myths harm real women’s health; how can we counter their effects?

Supporting our infertile friends and family becomes harder when we aren’t working on our own internalized assumptions and incorrect information (e.g., not knowing accurate infertility rates). Practitioners can also offer informed support when they become aware of historical and longstanding cultural stereotypes that influence our beliefs and behaviors.

We’ve therefore created this page for both patients and practitioners. Please read more about our research here.

Suggestions for Friends and Family

We acknowledge that attempts to be supportive can be inadvertently hurtful, and we’ve published on this—we want to use our unearned privilege to draw attention to these issues. Specific suggestions include: stop telling people to relax; go on vacation; have some wine; or try a specific position during sex. Don’t tell them “I know you’re going to have a baby” or “it will happen soon!” or “just wait! When you least expect it!” This can hurt when you are disappointed every month while people around you are announcing their pregnancies. A better choice would be to listen. Consider saying something like, “This sounds really hard. I’m happy to do whatever you need—do some laundry, drop off a meal, or sit in the waiting room with you.” Offer to be there, and then show up—without advice.

Resources for Women of Color Struggling with Infertility

There are so many great resources available, and we often direct women to find their “tribe” on social media. The organizations we describe here have Facebook pages, as does RESOLVE and many other organizations working to spread awareness about infertility and to “de-bunk” fertility myths. We also recommend finding people to follow on Instagram—there are sub-communities for people with various diagnoses and in various stages of testing and treatment. Researching private Facebook groups (e.g., secondary infertility, endometriosis support) and Instagram groups (#ivfsucks, #ttc, #ttcsisters) helps as well—you can ask questions you are planning to ask your medical team, get perspective before your appointment, and have a crew of people cheering you on, even when you don’t feel ready or able to share your journey with friends and/or family.

Online Resources:

RESOLVE

Fertility for Colored Girls

The Broken Brown Egg

GloZell Talks about Pregnancy

Recommendations for Practitioners

For REIs, OBGYNs and family physicians, we can offer further suggestions. We advocate for listening closely and taking female patients seriously, which can help get to these diagnoses more quickly. Research suggests that the pain of female patients (generally, not just in terms of reproductive health) is not acted upon as quickly, and is not rated as highly (on 1-10 scale) by practitioners as it is for males. This could mean ER doctors are sending women home with active and growing endometrial tissues, ruptured or rupturing cysts, deepening fibroids, hormonal imbalances, etc. All these issues, left undiagnosed and/or untreated can cause short and long-term issues with infertility and reproductive health more broadly. Further, there is ample evidence of racial bias skewing and complicating medical diagnosis and treatment of various kinds. Unfortunately, racial and gender bias act together (a phenomenon often referred to as “intersectionality”) to further complicate practitioner-patient interaction for women of color seeking REI diagnosis and treatment.

REI specialists/clinicians

Consider pursuing continuing education (CE) specifically related to practitioner-patient communication. Our major local health system encourages all new doctors to go through a program called Curo, which is Latin for “to care for,” and the training is structured around the acronym:

  • C– connect. How do we connect to our patients and hear their voice and story?
  • U– understand. How do we use empathy and actively listen?
  • R– reveal and relate. This is the teaching health education portion of the condition or diagnosis.
  • O– outcome. Both on the patient and provider side there are positive benefits. These and similar training systems around the country provide specific methods for meeting these goals, and allowing space for patient narratives, encouraging empathy, and active listening can help every patient feel engaged, heard, and supported. This may be a particular need for patients of color who may be battling stereotypes to even come to an REI office.

Using practitioner-specific trainings to build or expand a communicative skill set is a great place to start. At this time, Curo only operates within one healthcare system, but there are similar, effective programs available in other health systems.

    • Offer a connection by sharing your story. As a practitioner, if you have your own infertility story, tell it! Even if there is a racial divide, this will help build trust. However, don’t assume you know what the experience is like for patients of color. Empathize, but don’t project.
    • Know something about a patient other than the infertility that you can ask them about. Sometimes this helps lower anxiety. Many of our study participants recalled that doctors didn’t make eye contact, use their name, or make any kind of small talk during a visit. Make eye contact and say the patient’s name at every appointment. In terms of crossing racial divides, make sure you make eye contact, and describe procedures before you begin them, as well as throughout the process if that is possible. Be aware that patients may have previous negative experiences with practitioners and embrace the opportunity to provide a markedly different, personal, and affirming experience.
    • Acknowledge intuitive and faith-based knowledge, even if it doesn’t guide your treatment decisions. In other words, if a patient of color expresses that this is part of her or his perspective, honor it. Ask your patients what resources they have outside the office for emotional support. For patients who are connected to a church community, encourage them to turn to this community as an emotional resource if they feel comfortable doing so. This acknowledges that your patients of color may need extra support from their peers, and it confirms that they should consider having a plan in place without directing it.
    • Offer links to trusted informational videos, articles, books, etc. How can patients get their questions answered if they can’t get in touch with a doctor or nurse? In terms of racial prejudice, it might help if your office had a private server and/or smartphone application that allowed all patients, and particularly patients of color, to protect their privacy while having adequate access to staff and information.
    • Provide a wide range of social and emotional supports. Do not assume patients can pay for counseling (that many need) on top of their treatments. Place all resources together in one document so no one feels singled out, but be sure to provide resources specifically for people of color (e.g., Fertility for Colored Girls, The Broken Brown Egg).
    • Consider giving patients a supportive book when they begin this process, and let them choose one of two or three options. We recommend books that represent a wide range of individuals such as Fertile Soul by Randine Lewis, Silent Sorority by Pamela Mahoney Tsigdinos, Inconceivable: A Woman’s Triumph over Despair and Statistics by Julie Indichova, Hold on to Hope: Stories of Black Women’s Fertility, Faith & Fight to Become Mommies, by Rev. Dr. Stacey Edwards-Dunn, and Birthed: Finding Grace Through Infertility by Elizabeth Hogan. These books represent people of various races, ethnicities, classes and faiths.
    • Acknowledge patients’ experience by giving a sympathy card after failed treatments—many of our study participants felt bereft after failed treatments and received absolutely no follow up from their REI, except for directions on beginning the next cycle, which isn’t always a given, and shouldn’t be assumed. (Cards and books can be kept in stock in office to alleviate extra time spent procuring them.)

OB/GYNs

    • See recommendations above for REI specialists.
    • Be aware of the history of obstetric abuse in the African-American community. As a result, obstetricians can focus on taking pain assessments seriously, and assist patients of color in closely monitoring their reproductive health from a place of empowerment, including training in patient-centered pelvic examinations and/or trauma-informed pelvic exams, and giving detailed explanations on required tests, exams, and diagnostic results.

Embryologists

In both our qualitative and quantitative research, we found that embryologists did some of the most emotive communication with patients (e.g., reports on fertilization rate, success/health of embryo development, recommendations for transfer), and yet received the least in-house support and training in patient communication. Endocrinologists deserve specific training in “breaking bad news” and/or translating their findings into non-specialist terms, as well as directing patients to support resources elsewhere at their REI practice or outside their practice if they operate independently. A method referred to as SPIKES is used in oncology practices and we believe some of these same methods would translate well to REI practices.

Administrators

Since receptionists are often the first to greet new clients and seasoned patients, provide forms, and direct individuals to their next steps (e.g., blood draw, billing, etc.), they desperately need any communicative training or professional development other practitioners receive. Receptionists might contribute to a patient’s discomfort, unease, or grief by giving unclear directions or requesting payment without acknowledging the emotional toll of a certain visit. It is vital these individuals become experts in communicating with patients, and given the particular strains and stresses experienced by women of color in healthcare, sensitivity to these issues will be important as well.

 

Bethany Johnson (right), MPhil, M.A., a Research Faculty Associate in the Department of Communication Studies and Associate Faculty in Women’s and Gender Studies, specializes in American medical and gender history. She has published in Health Communication, Women & Language, and Women’s Reproductive Health; her auto-ethnographic work appeared in Departures in Critical Qualitative Research. In 2016, she discussed her research as a guest of “Charlotte Talks” on National Public Radio (NPR).

Margaret M. Quinlan (left), Ph.D., is an Associate Professor of Communication and a Core Faculty Member of the Health Psychology Ph.D. Program at the University of North Carolina at Charlotte. Her scholarly work relates primarily to issues of equality and to the structures that constrain and empower all who are involved in giving and receiving care within and outside the US medical establishment. Quinlan has published approximately 40 peer-reviewed journal articles and 15 book chapters and co-produced three documentaries in a regional Emmy award-winning series, Courage of Creativity.

 

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