I’m three-quarters through Maya Dusenbery’s phenomenal Doing Harm, and it’s by far the best book about healthcare I’ve ever read. I’m lapping up every right-on-the-money page as she delves deep and raw into gender bias toward women, most who are women in pain.
This tome is stirring powerful emotions in me, so much so that I’m re-experiencing the doctor-induced trauma I suffered after becoming ill with chronic pain and fatigue at age 21. And like all good therapy, it’s ultimately helping me come to terms with it.
While the book is extraordinarily sad (hey, the topic of gender bias in healthcare is nothing but a tragedy!), the awareness it provokes is our hope for a better future. Doing Harm is a brilliantly researched and fact-based gem that’s filling in every missing piece of my journey through the abusive male-dominated healthcare system.
Many times I’ve wanted to throw the book, often finding myself trembling and yelling. Dusenbery draws a centuries-long, historical perspective about how and why women are belittled, dismissed and tortured. It’s a rough read, even for the well indoctrinated. Ultimately, this feminist author grips me with her sharing of many gut-wrenching stories about real women’s real suffering. More than once, I’ve broken down and sobbed for them. Or were the tears for me?
A key-theme of Dusenbery’s is that, though improved, gender bias in healthcare is alive and well. She emphasizes that if you’re in pain (or having another illness symptom), you should never submit to being labeled an anxious, hysterical woman. Know that what you’re feeling is real and if your doctor says you’re crazy, it’s his problem, not yours.
To my surprise and horror yesterday, I put this book’s message to practice. I thought my gender bias hell days were behind me, but not even close.
I have an anxiety disorder that was triggered by consuming potent marijuana when I was 18. My worst symptoms were de-realization (the terrifying feeling that nothing around me was real), obsessive-compulsive disorder and panic attacks. I was able to keep my stuff together until I got CRPS, and eventually had to leave my performing career. The subsequent implosion of my future re-ignited my anxiety disorder to the nth degree. Not only were things around me unreal, even the sound of a phone ringing was so distorted I’d cover my ears. Before long, I could only lie in bed and stare at the wall wishing the cracks would appear real.
One of the most reassuring days of my life was when I was diagnosed, learning that this disorder was so common, especially among pain folk, my doctor could tick off symptoms before I could. He put me on 4 mgs. of the benzodiazepine, Klonopin – and that was my miracle drug. Not only did the anxiety lessen by about 85%, I went into a partial CRPS remission. My doctor expected this pain relief, so I got a 2-for-1’er.
Klonopin has kept my anxiety in check ever since, so I was stunned several days ago to have my prescription refill denied with no explanation. I made an emergency appointment after discovering that my internist was on maternity leave. I was assured by the scheduler that the male doctor covering for her (wasn’t thrilled by that!) needed only to lay eyes on me before refilling this Schedule IV medication.
When Dr. Hyde entered the room, I immediately sensed hostility, intimidation and an agenda. With barely a hello, he launched into a diatribe about the evils of long-term benzodiazepine use and how there would be nothing but doom and gloom if I stupidly continued down this path. He repeatedly insisted I take one of his anti-depressants (Celexa) as a common-sense replacement.
Instead of a caring exchange with a healthcare provider, this was a mansplaining intervention, one perpetrated by the all-knowing male doctor to the naïve, getting-up-there (yes, he brought up my age) frail femme. This monster suspiciously asked, “Do you even have ANY pain, anywhere?” He went on to insult my last two PCPs (both of them women) for witlessly prescribing this menace.
Hyde didn’t pause to ask why I was taking Klonopin or if it had worked safely and successfully all these years. He didn’t bother to ask how I felt about trying something new. Instead, he capped, with righteous indignation, that it was his duty to “first, do no harm.”
In that moment, my pain spiked and I surely did feel damned harmed. I reached into my bag and held up Dusenbery’s book. He got the message with its big, bright cover title. That stopped him in his tracks.
In the end, I got my refill, but at a great cost. I felt insulted, diminished and violated. I’m dictating this post while lying in bed due to my pain flare – and am exhausted from losing a night of restorative sleep because the emotional upset triggered my chronic fatigue.
As I’ve shared in many media interviews, “these doctors stain our psyches so profoundly, I don’t think we ever fully recover.” Gender bias (dare I say misogyny?) in healthcare is still full throttle in this era of #MeToo and #TimesUp.
Please read Doing Harm. We need to get educated and sharpen every tool we have to push back conscious and unconscious acts of bias-induced harm.
Stay strong, fellow sisters in pain…
Cynthia Toussaint founded For Grace in 2002. It is a non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.