UnDoing the Harm

doing harm

Doing Harm, by Maya Dusenbery, engaged me right from the start.  The material was clearly of great interest to me, but the actual way the book unfolded is what had me completely captivated.  The female pelvis was not the focus of this book, but pelvic conditions were definitely addressed.  The book is divided into three sections.  Overlooked and Dismissed: A Systemic Problem lays the groundwork for everything that follows.

The first chapter addresses The Knowledge Gap.  I really thought that I was pretty in the loop with the ins and outs of the health care system in the U.S.  I did not know that women have been nearly entirely excluded clinical trials.  And, that because women often present with different symptoms, like when experiencing a heart attack, that their experience of pain or pathology has been too often discounted and/or dismissed.

“Sex/gender differences have been observed in the prevalence, severity, symptoms, and risk factors of countless diseases.  To take just a few examples: Women are two to ten times more likely to develop autoimmune diseases.  Women are more likely than met to recover language ability after suffering a left-hemisphere stroke.  Women who have lung cancer are more likely than their male counterparts to have never smoked.  Women more commonly do not have any chest pain when experiencing a heart attack” (pg, 42).

That last point is revisited over and over with women who have been turned away from the hospital when experiencing a heart attack or appendicitis or whatever condition that doesn’t fit the symptoms of male model that was taught in medical school.

Of course, the catchall diagnosis of “hysteria”, both historically and currently, was explored and Ms. Dusenbery offered example after example of women being caught in “A Double Bind: Either You’re Hysterical or Nothing’s Wrong” (pg. 97).  Which is worse?  The woman needing care is unlikely to receive it because she is either mental or making it up.  Heart disease, Lyme disease, fibromyalgia and chronic fatigue are all covered in depth.  I had never heard of postural orthostatic tachycardia syndrome (POTS) so I appreciated that introduction.

And, pertaining to the female pelvis…. I wish I could say that I loved the subheading “’Just Use More Lube’ Is Not Sufficient Medical Advice”, except that is actually what a woman who was experiencing vulvodynia was told by her practitioner.  “A 2013 survey of eighty-five patients eventually diagnosed with provoked vestiboldynia” found that

35 percent of them reported that it took over fifteen doctor’s appointments to get a correct diagnosis, and 37 percent said it took over thirty-six months.  And, course, studies like that capture only the experience of those women who do ultimately get diagnosed, not those who gave up after one dismissal of who couldn’t afford to get a second opinion or who never sought help to begin with. (pg. 239)

You can’t even call that health care.  The endometriosis section is also packed with women who have had to fight and fight to get treatment.  Ms. Dusenbery really went into depth about the secret handshake that some doctors have that once they find out your symptoms have been dismissed by another doctor, each successive doctor will too often just follow in the same with the same dismissal.

Interstitial cystitis (IC) is another condition I am just learning about in terms of prevalence it is and how it contributes to pelvic pain.  “According to a 1993 study, 43 percent of IC patients had been told they had an emotional disorder before being properly diagnosed an average of four years later” (pg. 184). “This once-rare psychosomatic condition of postmenopausal women is thought to affect 8 to 10 million Americans” (pg. 186),

Doing Harm took me on a journey of heartbreak and inspiration.  I can’t even find the words to describe people and a system that seems so willing to not only just discount another person’s suffering, but to then actively add to that suffering.  There were also many inspiring stories of women who finally got the someone to acknowledge and assist in resolving their symptoms.  I hope that through this book, and with each women who shares her struggle, that the next woman will sit across from a health care provider who will listen and support her on her healing journey.