Thank you, Ed Coghlan, at the National Pain Report for your follow up piece to the Los Angeles Times op-ed about women in pain often getting the “it’s all in your head” misdiagnosis.
In my opinion the only way out of this labyrinth of medical abuse is to walk away from the western healthcare model and turn to self-management and integrative care.
When I read Emily and Gracie’s stories, I was actually relieved because we women in pain have come so far since I became ill with CRPS in 1982. It took me 13+ years to get a diagnosis – and 15 years to get care.
Always a self-advocate, I saw over a hundred doctors and was dismissed with a plethora of insults, including “you’re making up the pain to get secondary gain from your attentive partner”, “you have stage fright”, “you have tendonitis from Mars”, “you’re folding up your contracted arm with your mind just the way one levitates oneself” and the classic, “you’re only a woman anyway, it doesn’t really matter – just shoot yourself in the head.”
We women in pain lose most everything, including a chance for a cure, due in large part to this abuse. I lost my beloved career as a performer, my family and friends ran for the hills, my 37-year partner and I couldn’t marry as I would have lost my healthcare benefits, we couldn’t have a baby. I lost the chance to live a moment of my life without severe pain and fatigue and I lost the chance to walk more than 100 feet without a wheelchair. To this day I’m housebound and unable to drive.
On top of all this loss was associated depression and anxiety, and the last thing I needed were doctors spewing cruelties while disregarding my pain. These doctors stain our psyches so severely, few of us are able to fully recover, reinvent ourselves and move on with a different life.
I’ve said it many times before, and I’ll continue saying it. When it comes to high-impact pain, the western healthcare model is a broken disaster chocked full of abuse, ignorance and clinically-induced trauma. This system focuses on surgeries, procedures and medications, most of which make us sicker. In my case, they broke my arm, gave me severe pelvic pain, put me on an infusion drug that almost killed me and insisted on giving me an intra-thecal pump, two spinal cord stimulators and ketamine infusions. This is but a partial list.
I finally found better care and wellness about 15 years ago when I walked away from traditional care and saw my first integrative medicine doctor. When Dr. Brodsky walked in, I was ready for battle, strongly making my case for not wanting the many procedures, drugs, etc. When he stated that he didn’t believe in invasive care, I knew I’d made my way home.
Dr. Taw has since taken over – and his respective bedside manner is wonderful treatment in and of itself. He listens mindfully and after I describe a problem in detail he asks me what I think we should do. Dr. Taw then shares his ideas about life-style balance and stress management. We truly work as a team. No discrimination, no gender-based dismissal, no God complex. In fact when I call Dr. Taw (which is infrequent), he gets on the phone with me. That’s the key to the integrative medicine model – these are MDs trained in traditional and alternative care who place the patient front and center. These doctors know pain and fatigue conditions as most women in pain end up migrating there after the western model has left them sicker for years, even decades.
While Emily and Gracie’s stories remind me that we’ve come a long way, there’s still much work to do. At For Grace’s September Change Agent Pain Summit: Part One, we’ll gather men and women in pain and their caregivers to discuss barriers to care and possible solutions. We’ll highlight the NIH’s National Pain Strategy, one that promotes the integrative care model as “best practice.”
The day will be like a big focus group – and everything we glean will be shared with healthcare thought-leaders, legislators and the media at our 2018 Summit: Part Two where we’ll work to implement the National Pain Strategy in California.
Join us to be a part of the collective voice of people in pain and their caregivers. There is a better way.