How Is This Not a Thing?

You know how you hear or read something, and your first thought is, “Huh? How is this not a thing?”

In my case this response usually has to do with infertility-related topics.

Thing One: Endometriosis

How is a proper and timely diagnosis for endometriosis still not a thing?

The superb Samantha Bee recently highlighted this on her show Full Frontal.  In a segment on women’s health called The History of Women’s Pain, Bee also explains not only is there no cure for endometriosis, it takes an average of six to eight years for a woman to get an accurate diagnosis.  Further, hormones have long been the one-size-fits-all for women’s repro health — whether merited or not. In short, very little time or energy has gone into understanding and properly treating the underlying causes of endometriosis and its ugly companion, infertility.

Doctors prescribe birth control to deal with a whole range of issues that have nothing to do with preventing pregnancy, “because,” as Bee says, “women’s healthcare is still shrouded in the same fear, shame, and condescension that has been surrounding the female body since some dude made up a story about some lady stealing an apple to justify why he hates women.”

I’ll go a step further on infertility diagnosis and treatment. Consider a few questions: Why is there still an ‘unexplained’ category?? And why is IVF the default procedure — whether medically indicated or not?

endometriosis

Glad to see Samantha join us in highlighting the need for better answers.

Thing Two: Infertility Emotional Care

During this morning’s coffee and a scan of The Washington Post headlines, this article caught my attention: Some basic acts of kindness found to help patients dealing with cancer.

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Among other things author Leonard Berry is a fellow with the not-for-profit Institute for Healthcare Improvement in Cambridge, Mass.  (His piece ran originally in The Conversation.)

As longtime readers know, I sometimes do a word swap to show the lack of attention paid to the emotional impact of infertility.  In this case I’ve swapped in the word ‘infertility’ in places where ‘cancer’ was used.  Read along and see if these examples resonate.

Infertility may not be life-ending, but it usually is life-changing. An infertility diagnosis instantaneously turns life upside down for patients and families. Infertility care is a “high-emotion” service, and the care team must not only effectively treat the disease but also address patients’ intense emotions.”

Infertility care is about more than the science, which has led to important advances in treatment. High-touch needs to complement high-tech. In a recent paper, co-authors and I explore how six types of kindness can improve infertility care.

The care areas highlighted by the author seem obvious from the patient perspective. However, it appears care-givers need them spelled out. They are:

  • Deep Listening
  • Empathy
  • Generous Acts
  • Timely Care
  • Gentle Honesty
  • Support for family caregivers

Gentle Honesty and Intrinsic Hope

I’d like drill into the area of Gentle Honesty. Let’s use my word swap exercise to spotlight how rarely ‘gentle honesty’ is used with infertility patients:

Infertility is a high-potency word, a word without any positive associations,” states an infertility patient. Asking patients how much they want to know about their illness is informative and kind. Most patients want to hear the truth in honest, well-chosen words that convey a sense of partnership and that guide them through difficult decisions.

A doctor commented, “Far too often, patients and doctors are too optimistic. Realism is needed so that patients and their doctors can make good decisions.” A nurse practitioner said, “A doctor may say, ‘We can continue treatment or we can just do supportive care.’ We have to take the word ‘just’ out of that sentence.”

Doctors face complex personal pressures to give patients every chance to live, and they face external ones – from patients or family members who do not want to give up.

Although patients initially hope for cure or remission – focused hope – clinicians can guide them to intrinsic hope when the disease is advanced and cure or remission is improbable.”

Things That Would Help

So, dear readers, wouldn’t you agree we’re long past due for deep listening, empathy, generous acts, timely care, gentle honesty and support?

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Wouldn’t it be so very nice if all of the above were, indeed, things for infertility?