Medical Gaslighting: How My Diagnostic Trauma Unfolded

Medical Gaslighting: How My Diagnostic Trauma Unfolded
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I have a history of abusive relationships with medical providers. My trauma history stems from medical mistreatment and being dismissed while experiencing serious symptoms.

My story is not uncommon.

Disclaimer: This is not a piece to hate on doctors. I have a history of healthy, productive relationships with medical providers, too. In fact, I owe my life to some of the women and men in the healthcare profession.

Losing confidence

Mental health challenges arise from years of feeling sick, scared, and in pain for no determined reason. The more I began speaking up about my body’s sensations and about feeling rejected by doctors, the less confidence I had in my pain experience. After years of this cycle, I lost trust in my judgment and began to question the validity of symptoms.

Weeks and months of waiting to see a specialist seemed like a waste of time when my test results would come back normal and I’d receive the brush-off with anxiety scripts. Even when hospitalized with acute attacks, I experienced dismissals because my severe pain was invisible, and therefore easy to disregard.

By the time I was 32, I had spent much of my life searching for answers about bouts of severe abdominal pain. In August of that year, my condition escalated to a point that my colon shut down. Finally, I told emergency room doctors about my pain and they agreed with me. This time, they could see something was seriously wrong, and I was admitted to the hospital.

It wasn’t all in my head

The soft scent of lavender greeted me upon waking. I was tucked into my hospital bed with a homemade quilt, finding both comfort and love under its weight. I turned my head and was surprised to find a neatly dressed woman sitting next to me, legs crossed. I had been in the hospital for the better part of a week, but the psychosis made it difficult to determine the day or time, or remember the members of my own care team. This woman wore a name badge, but she didn’t seem familiar to me.

She introduced herself as a clinical counselor. She surveyed me over her glasses, and then glanced at the clipboard in her lap. Then she shared all of the details about my case that concerned her: my generalized anxiety disorder diagnosis, my refusal of food and drink, and my insistence of severe pain with no medical explanation.

I immediately felt like I needed to defend myself and point out the cognitive processing therapy I’d been doing, with the help of my therapist. But this counselor wasn’t there to comfort me while I cried. As it turned out, she was there to investigate my doctor’s suspected diagnosis of borderline personality disorder.

Admitting to a medical professional that I needed help took a lot of courage and mental energy, because I was trying to avoid this exact type of situation. Yet there I was, shivering under my colorful quilt, face-to-face with an embodiment of my own shame and disbelief. Sadly, she wasn’t the only one on this medical team to tell me it was attention that I was seeking.

Well, OK, yes, I was seeking attention — medical attention!

Shortly after she left my room, I began to spasm and convulse. My eyes briefly lost focus, and knowing my sodium was very low, I wondered if I was having a light seizure.

I asked my healthcare team about it, but they didn’t seem to be concerned.

I remember the head nurse telling me that it was just anxiety.

I’ve had panic attacks, and this experience felt different than any anxiety I’ve ever had.

Hours later, I was discharged with a recommendation to see a new therapist. It took an additional two months and more gaslighting by medical providers to receive my rare disease diagnosis of acute intermittent porphyria.

Clinical and diagnostic trauma

Medical gaslighting occurs when health professionals minimize or disregard disabling or dangerous symptoms. This can be by refusing to perform lab tests or insisting that symptoms are related to mental health disorders. Assuming symptoms or a diagnosis are based on race, sex, gender identity, ethnicity, age, weight, or income level is another form of medical gaslighting.

I don’t see a lot of discussion about mental health in the rare and chronic disease community, but it is a constant struggle to live day-to-day when the trauma you experience occurs within your own body. When I was looking for answers to my pain, I didn’t want sympathy or pity, I just wanted to be heard and believed.

I will continue to raise my voice and address any stigma that comes from living with and accepting mental health challenges. For anyone experiencing trauma from medical gaslighting, you are not alone.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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2 comments

  1. holly bucciarelli says:

    Hi Claire.I went to a neurologist who specialized in mobility 2 weeks ago. Over the past 6 months my all over body tremors have gotten much worse. As I was telling the Dr. About my symptoms she stopped me in mid sentence.She informed me that she will be asking the questions and its my job to answer them.At the end of the appt she told me that my blood pressure was 176/126 and it was clear to her that my tremors were caused from nervousness from being in a Dr. Office. This morning I went to my GPs office because I am in full attack triggered from a med they perscribed last week.She said that I couldn’t be in pain because med allergies don’t cause pain.I explained to her that I didn’t have an allergy. Certain meds trigger porphyria attacks which cause pain. I tried to give her the APFs number but she refused it. I tried to show her the list of bad meds from the APF and she said she wasn’t interested.Instead I got a lecture on drug addiction

    • Holly- It pains and frustrates me to hear your story. Thank you for sharing your experiences with me and other readers. I believe our stories are the most powerful thing we have to combat adversity and create awareness of our rare disease. It sounds like you’re doing great advocating for yourself, even if it feels like you’re hitting a brick wall with your doctor. I hope you are able to find someone who is open to listening to you. Sending love!

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