Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

What a lifetime of gaslighting by other doctors feels like

Sarah Cohen Solomon, MD and Linda Bluestein, MD
Conditions
June 30, 2022
622 Shares
Share
Tweet
Share

“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

Prev

What I learned after being hacked on social media [PODCAST]

June 29, 2022 Kevin 0
…
Next

Are you guilty of anchoring bias?

June 30, 2022 Kevin 0
…

Tagged as: Rheumatology

Post navigation

< Previous Post
What I learned after being hacked on social media [PODCAST]
Next Post >
Are you guilty of anchoring bias?

Related Posts

  • Suboxone for pain makes sense. Why don’t more doctors prescribe it?

    Hans Duvefelt, MD
  • Why do doctors who hate being doctors still practice?

    Kristin Puhl, MD
  • Doctors: It’s time to unionize

    Thomas D. Guastavino, MD
  • 3 reasons why doctors don’t unionize

    Baird Brightman, PhD
  • When doctors are right

    Sophia Zilber
  • We’re doctors. We signed the book.

    Jonathan Peters, MD

More in Conditions

  • Physician autonomy and patient interactions in corporate health care

    Michele Luckenbaugh
  • Vague criteria can lead to misdiagnosis and prison

    L. Joseph Parker, MD
  • U.S. maternal mortality crisis: a deep dive

    Alan Lindemann, MD
  • Contemporary weight loss: Unveiling the quest for elusive elixir

    Osmund Agbo, MD
  • Why patients write: stress relief, self-care, and sharing experiences

    R. Lynn Barnett
  • Misinformed claims and the offensiveness of discrediting COVID-19 vaccine development

    Angel Garcia Otano, MD
  • Most Popular

  • Past Week

    • Reigniting after burnout: 3 physician stories

      Kim Downey, PT | Physician
    • I’m a doctor, and I almost died during childbirth

      Bayo Curry-Winchell, MD | Physician
    • I’m tired of being a distracted doctor

      Shiv Rao, MD | Tech
    • Inside the grueling life of a surgery intern

      Randall S. Fong, MD | Physician
    • Ketamine for mental health conditions: What every primary care physician needs to know

      Carlene MacMillan, MD & L. Alison McInnes, MD | Meds
    • Using the language of art to create work-life balance

      Sarah Samaan, MD | Physician
  • Past 6 Months

    • Medical gaslighting: a growing challenge in today’s medical landscape

      Tami Burdick | Conditions
    • Balancing opioid medication in chronic pain

      L. Joseph Parker, MD | Conditions
    • I want to be a doctor who can provide care for women: What states must I rule out for my medical education?

      Nandini Erodula | Education
    • Mourning the silent epidemic: the physician suicide crisis and suggestions for change

      Amna Shabbir, MD | Physician
    • Reigniting after burnout: 3 physician stories

      Kim Downey, PT | Physician
    • 1 in 4 attempt suicide: the persecution of autistic physicians

      Patricia Celan, MD | Physician
  • Recent Posts

    • Using the language of art to create work-life balance

      Sarah Samaan, MD | Physician
    • Levamisole is good for your dog, but bad for your cocaine

      Robert Killeen, MD | Meds
    • Physician autonomy and patient interactions in corporate health care

      Michele Luckenbaugh | Conditions
    • PSA screening: What you need to know [PODCAST]

      The Podcast by KevinMD | Podcast
    • Vague criteria can lead to misdiagnosis and prison

      L. Joseph Parker, MD | Conditions
    • U.S. maternal mortality crisis: a deep dive

      Alan Lindemann, MD | Conditions

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 2 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

CME Spotlights

From MedPage Today

Latest News

  • Black Patients at Higher Risk for Physical Restraint in the ED
  • Compassion Is a Learnable Skill
  • When a Video Visit Leads to Real Connection
  • Smaller Lesions, Better Baseline Visual Acuity Bode Well for Submacular Hemorrhage
  • COVID Conspiracies Return; Norovirus on the Hiking Trail; 2nd Pig Heart Transplanted

Meeting Coverage

  • Loneliness Needs to Be Treated Like Any Other Health Condition, Researcher Suggests
  • Stopping Medical Misinformation Requires Early Detection
  • AI Has an Image Problem in Healthcare, Expert Says
  • Want Better Health Outcomes? Check Out What Other Countries Do
  • ERS Roundup: Cell Transplant Boosts Lung Function in COPD Patients
  • Most Popular

  • Past Week

    • Reigniting after burnout: 3 physician stories

      Kim Downey, PT | Physician
    • I’m a doctor, and I almost died during childbirth

      Bayo Curry-Winchell, MD | Physician
    • I’m tired of being a distracted doctor

      Shiv Rao, MD | Tech
    • Inside the grueling life of a surgery intern

      Randall S. Fong, MD | Physician
    • Ketamine for mental health conditions: What every primary care physician needs to know

      Carlene MacMillan, MD & L. Alison McInnes, MD | Meds
    • Using the language of art to create work-life balance

      Sarah Samaan, MD | Physician
  • Past 6 Months

    • Medical gaslighting: a growing challenge in today’s medical landscape

      Tami Burdick | Conditions
    • Balancing opioid medication in chronic pain

      L. Joseph Parker, MD | Conditions
    • I want to be a doctor who can provide care for women: What states must I rule out for my medical education?

      Nandini Erodula | Education
    • Mourning the silent epidemic: the physician suicide crisis and suggestions for change

      Amna Shabbir, MD | Physician
    • Reigniting after burnout: 3 physician stories

      Kim Downey, PT | Physician
    • 1 in 4 attempt suicide: the persecution of autistic physicians

      Patricia Celan, MD | Physician
  • Recent Posts

    • Using the language of art to create work-life balance

      Sarah Samaan, MD | Physician
    • Levamisole is good for your dog, but bad for your cocaine

      Robert Killeen, MD | Meds
    • Physician autonomy and patient interactions in corporate health care

      Michele Luckenbaugh | Conditions
    • PSA screening: What you need to know [PODCAST]

      The Podcast by KevinMD | Podcast
    • Vague criteria can lead to misdiagnosis and prison

      L. Joseph Parker, MD | Conditions
    • U.S. maternal mortality crisis: a deep dive

      Alan Lindemann, MD | Conditions

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

What a lifetime of gaslighting by other doctors feels like
2 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...