“If your shoulder were really injured, that maneuver would make you scream in pain,” he told me confidently.
My husband and I recently established care with a new family doctor. I was frightened and scarred from a long history of medical gaslighting that still tightens my throat whenever I meet a new physician.
Will this doctor believe me? Will he understand?
Years of dismissal made me wary of a new start, but we were in a new city. I didn’t have my network of connections with rehab doctors and physical therapists who could squeeze me in between my busy shifts. Trusting them had taken years, and this was not a reassuring start.
I took a deep breath.
“Dr. Jones,” I began, a little shakier than I’d hoped. “I’m sure it was unintentional, but I feel like you’ve dismissed my pain as if it doesn’t exist or isn’t important. I am both a doctor and a patient, and I’ve become an expert in my own disease. Having hypermobile Ehlers-Danlos Syndrome (hEDS) means I live my life in pain, and acute pain impacts me differently. Please respect that.”
To his credit, he took a deep breath and apologized. However, I left without what I needed — help.
He claimed he was unfamiliar with the appropriate local specialists and didn’t want to refer to physical therapy himself. Once again, I was on my own. Crying, I got into the car.
Once a virtually unheard-of rare disease, hEDS has been making headlines recently in news outlets from the Washington Post to E! Magazine. Celebrities like Jameela Jamil, Yvie Oddly, Lena Dunham, Sia, and Halsey share their diagnostic odyssey and the impact of EDS on their daily lives.
The Ehlers-Danlos Syndromes (EDS), disorders of connective tissue, were reclassified in 2017 into 13 subtypes, with hEDS being the most common. Currently, a clinical diagnosis since the cause is unknown, the Norris Lab at MUSC identified a candidate gene that will hopefully help identify hEDS patients more efficiently.
Patients experience a kaleidoscope of symptoms, covering every organ system and requiring many specialists, all of whom never connect the dots. However, one unifying hEDS experience is the lengthy and frustrating journey to diagnosis, heavily laced with dismissal, blame, and gaslighting along the way.
As a patient and doctor, I am in the unusual position of bridging this divide.
My journey started young. I spent my adolescence trying to find answers to my painful joints, headaches, and fatigue.
When I demonstrated how my wobbly ankles affected the rest of my skeleton, the chief of orthopedics at our state children’s hospital shrugged and called it normal.
Several specialists told me to exercise more and suggested I needed a psychologist because the symptoms were likely “all in my head.”
Sometimes they’d go so far as to claim I was attention-seeking, making up symptoms because my father was concurrently dying of cancer. One pediatric rheumatologist evaluated my hypermobility and brushed aside my chronic pain since he saw no swelling or inflammation. Instead, he quipped that my extreme flexibility would make a man very happy someday. I was 14.
Despite the obstacles, we kept searching until a family friend, himself a physician, mentioned a recent patient with similar symptoms and suggested seeing a geneticist. My twin sister and I were formally diagnosed with hypermobile Ehlers-Danlos during college. It was both validating and life-changing.
Stress and poor exercise hadn’t caused my defective collagen — my genes had. Understanding my condition helped me to advocate for myself and enabled me to graduate college with honors and pursue my dream of medicine.
When I finally reached clinical rotations and peered behind the curtain for the first time, I was dismayed but not surprised to hear the remarks the doctors — now my educators — made about patients like me. “Lazy,” “whiny” and “needy” are the most palatable examples, but “exaggerating” may be the most harmful.
Patients who navigate chronic pain can always tell what a doctor thinks. We quickly learn we are instantly and irreversibly being judged — from the makeup masking our fatigue to how energetically we behave.
Too many histrionics and the doctor will label us as an anxious hypochondriac — or worse, drug seeker. Too little, and we simply get brushed aside with a note that reads: “findings unremarkable, ntd.” Nothing to do, no help here.
As a student, I felt powerless. I wanted to advocate for patients whose experiences mirrored mine, but I was afraid to publicize my diagnosis.
I had already experienced discrimination as a disabled medical student, and after a slew of injuries, I was struggling to keep up academically. I was at the mercy of my evaluators.
So, I compromised and published an article on KevinMD framed as if my perspective was limited to witnessing my sister’s battle with chronic pain from hEDS. I described how physicians approach patients who are suffering and how patients must prove their pain is both real and valid. I concluded that inadequate medical education and empathy place the burden entirely on the patients.
This burden is enormous.
EDS patients take an average of 10 years to be diagnosed.
In that time, the pain from microtrauma and joint instability can become unbearable. “Just exercising more” can backfire, causing injury and disability and creating a cycle of added stress from chronic illness. But the biggest challenge is when our physicians are our opposition. It’s been more than 20 years since the first time I tried to convince a doctor to believe me. I was just a child, and the trauma of repeated dismissal still haunts me at every new appointment.
Thankfully, I am a physician myself now, and I am no longer powerless. I can advocate for myself AND my patients in ways most people cannot. I can navigate the system and find specialists independently. But I shouldn’t have to, and neither should our patients.
And none of us should fear what our doctors say about us when they leave the room.
Sarah Cohen Solomon and Linda Bluestein are physicians.
Image credit: Shutterstock.com