How Is This Not a Thing?

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.

READ  The Invisibleness of Infertility: To Pass or Not to Pass?

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?

READ  All Women Are Infertile Most of Their Lives

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

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9 thoughts on “How Is This Not a Thing?

  1. Pamela, this is my favourite word-swap that you’ve done! Absolutely we are long past due for listening, and emotional care. I don’t have endo, but it infuriates me that this takes so long to diagnose. That people assume women are more likely to imagine their pain, called “hysterical” etc. When my mother was dying in hospital with a broken hip, the nurse suggested to my sister that my mother was making up the pain. (They used to roll her around on her broken hip to make the bed, before pain meds were given!) My mother was the most stoic woman I have known. And when I had dengue fever, my boss admitted – after I got the diagnosis, which in NZ took a month because it was so rare – that he thought I was imagining it, that it was psychosomatic. I would say, “don’t get me started,” but clearly that would be way too late!

    Fortunately, though, those lucky women who find your blog, or any of the other Silent Sorority/No Kidding/Road less travelled blogs or groups in cyberspace, will find empathy, understanding, gentle honesty, listening, love and support. Definitely a case of better late than never.

    1. Pamela Tsigdinos

      Wow. So troubling that both you and your mother experienced such terrible medical care and lack of trust for your very real concerns.

      Agree, Mali, that there is much room for improvement! Glad we’re helping to change the narrative.

  2. i recently bought (& hope to soon read) a new book called “Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain” by Abby Norman. I do not have endometriosis (that I know of, anyway), but I firmly believe that if men experienced some of the issues that women do, there would be a lot more advances made in medical research & treatment….!

    Your word swap exercise (love these!) made total sense & highlighted the lack of care & compassion we receive as infertility patients & survivors. I do remember reading, when I was in treatment, that infertility patients’ stress is equal to or even greater than that experienced by people going through cancer, which was quite an eye opener (not to mention validating) for me.

    1. Pamela Tsigdinos

      Yes, Loribeth, the PTSD and stress levels are often overlooked. So appreciate your continued writing and work in this area. I know how much you, Mali and many others have contributed to our community of women and to the greater body of knowledge.

  3. Excellent word-swap! It certainly resonates with me.
    I agree 100% with what Loribeth says, too. I have often thought that if MEN had to endure the pain, there would certainly be a cure. I have endo myself and was only diagnosed four years ago, after having taken painkillers and spent countless weekends (and even entire vacations) on the sofa for 21 years.

  4. Yes!!! Infertility emotional care. Why is this not a thing?? It infuriates me. I think of the people who deal with infertility, not as an underserved population, but as an UNserved population. I have plans to change this in whatever big or small ways I can. One of my dreams is open a private practice to provide support for people dealing with infertility. I hope it’s not bad etiquette to link to a post of mine because I wrote about the need for infertility after care here: https://infertilephoenix.blogspot.com/2018/01/grieving-my-dog-questioning-fertility.html. Thank you for writing about this. Please let me know if you do, read, and/or hear anything else about this topic. It is a true need that I hope support is offered for soon worldwide.

  5. So true regarding endometriosis. Mine wasn’t diagnosed until age 40, AFTER 2 years of trying to conceive and 5 IUIs. No excuse given this is a disease that affects 10 % of the female population. And that my endo was, I later learned, detectable by a basic pelvic exam.

    I too, love your swap. I’ve found that it seems to floor people when infertility is put into a similar league as cancer, as well as when I reference my grieving process as similar to that of someone who lost a physical child. Think we need a deeper understanding, or at least I do, of this intense societal drive to minimize all things infertility and childlessness.

  6. BnB

    Endometriosis is a topic that gets me fuming! It took 23 years, numerous doctors, and a whole lot of pain before I was finally diagnosed at age 35 after we’d already given up on having children. I’ll always wonder if it caused my infertility, and on some level blame myself for not yelling loud enough to get the diagnosis and surgery sooner (though, let’s be real, a 12, 13, 18, 25 year old female talking about malfunctioning lady parts to mostly male doctors is frequently brushed off). I was told that my symptoms were psychosomatic so many times that I began to question if it was really in my head.
    Hell, I’m pretty sure the doctor who finally did the surgery and found it didn’t actually believe me until she cut me open and found it (then spent close to three hours removing as much as she could).

    Anyway, also love your swap! Thank you for your continued writing and advocacy for our community!

  7. I’ve told my diagnosis story before but I’ll tell it again in the hope that it helps other women. In my late 20s/early 30s I started to get intense period pain that kept me up all night, with shooting pains down my legs. Plus a lot of bowel involvement. The first (female, Irish) GP I mentioned it to said “Well, pain usually means that things are working properly down there”. At the same time, my periods had become unusually light and short. I Googled this extensively and found it linked to HIV and other conditions, and also (anecdotally) to some cases of endometriosis. I mentioned the intensely painful yet very light, two-day periods a number of times to (female, Irish) doctors and was told: “Lucky girl! You must save a lot of money every month”, and (from an annoyed female GP) “We wouldn’t consider light periods to ever be a problem. Come back if it gets really heavy”. It was only when I was 36 and trying to conceive that my stage 4 endometriosis was discovered – everywhere.
    It irritates me to recall how none of these female doctors thought it was strange that periods could go from normal 5-6 day affairs to weirdly scant, very painful 2-day ones with chronic bowel problems. Why wouldn’t that be investigated? GPs and sexual health workers here in Ireland are affixed to the idea that you have to be suffering from severely heavy periods to have any sort of problem. Just getting that out there in case anyone else has the same symptoms and has been fobbed off in the same way….
    Thank you Pamela

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