Six truths of delayed diagnosis and misdiagnosis
By Arielle Dance
This piece was originally published by Women Enabled International : Rewriting the Narrative.
The word "diagnosis" is highlighted in green. The tip of the marker is within the frame. Credit: Canva
Across the globe, people are actively seeking care and answers for their discomfort. Sadly, the time it takes to name their diseases or disorders can take years. Delays in diagnosis and misdiagnosis can have devastating effects. According to Dr. John Ball, who is a part of the Committee on Diagnostic Error in Medicine, "everyone will experience one meaningful diagnostic error in their lifetime".
The cause for late diagnosis can be blamed on lack of research or funding for a condition, poor access to specialty care, and medical gaslighting or disbelief. Addressing these systemic gaps is imperative to reduce the occurrences of late diagnosis, misdiagnosis, and some of the deadly impacts of the latter.
In this post, Sai Kaustuv Dasgupta (he/him), Jessica Lane (she/her), Arwyn Swanger (she/her), Dennis Tran (he/him), and Emerson Wheeler (they/them) — members of the Diversability Leadership Collective — , shared their experiences of delayed diagnosis and misdiagnosis. Across the board, there is common ground in the repercussions and life-altering impacts that each person experienced.
Join me to explore the six recurring themes in their experiences.
1. Overmedicating
Swanger — a neurodiverse adult with ADHD/ADD, CPTSD, and Autism — was prescribed over 30 meditations in search of a diagnosis. These medications were prescribed for her supposed diagnosis of Bipolar Disorder. "At 33, I finally received my diagnosis of being Neurodiverse and talked about my Autism, which is still getting an official diagnosis. I was poked, prodded, talked down to, told that there was something wrong with me," Swanger says.
Against a light blue background, there are 5 pill blister packs and several loose pills. Credit: Canva
Lane lives with endometriosis and adenomyosis after over two decades of misdiagnosis. Her providers prescribed birth control pills and painkillers constantly without a clear understanding of her disease. "I continued to see countless doctors in my twenties. Doctors never had answers for me but put me on numerous medications," says Lane, adding that for endometriosis, "interventions are based on harmful drugs which the pharmaceutical industry greatly profits from, not on actual helpful interventions".
2. Medical Gaslighting
Medical gaslighting describes a behavior in which a medical professional dismisses or downplays a patient's symptoms or attributes them to something else, and it can take many forms, including someone telling another person they are imaging that they are ill or questioning their sanity. Swanger blames gaslighting as a primary cause for misdiagnosis and delayed diagnosis.
Lane recalls her experience of medical gaslighting, and shares that "doctors had no idea what was wrong but brushed it aside saying pain is normal for women! I knew this level of debilitating pain was not normal." Wheeler had a similar experience. When they were seeking diagnosis, medical providers misdiagnosed them with anxiety and vasovagal syncope. Once they received a diagnosis of Postural Tachycardia Syndrome, Ehlers-Danlos Syndrome, and associated neurodivergence, Wheeler felt relieved.
"To know it's not 'all in your head' is so important. It was one of the first steps toward recognizing and working on healing.... It helped me realize that the medical gaslighting I experienced had caused me to start invalidating my own experience, and that the way providers treated me had enabled me to start dismissing myself in my mind, too."
3. Numerous procedures
While seeking diagnosis, many people have multiple exploratory procedures and tests. While seeking a diagnosis for endometriosis, Lane underwent several procedures in hopes of pain relief. Untrained medical providers could not easily diagnose or treat Lane's disease but turned to procedures that Lane described as traumatizing and unhelpful. Dasgupta, in turn, believes his doctors were using him to learn more about Osteogenesis Imperfecta. "Doctors were treating me just like I was a medium of experience and testing," he shared.
4. Traveling Long Distances to find Specialists
Because of the complexity of many medical conditions, specialist care comes with a high price tag and far travel. Lane shared that even after her first failed endometriosis excision surgery, it took her "traveling to another state to see a well-renowned specialist." This surgery helped reveal the added diagnosis of adenomyosis.
As a child, Dasgupta visited the distinguished specialists in his area. Dasgupta recalls that after a week of observation, one doctor found the disease and its root. Both Dasgupta and Lane had to search for specialized care because of the lack of awareness of their disease and lack of access to specialized medical facilities.
5. Self-Advocacy
While seeking answers about their health, many people are forced to become strong self-advocates, searching for — and sometimes creating — their own resources so they can educate medical providers. From online support groups to attending conferences about their suspected condition, many patients have built their own networks. Lane relies on social media resources and organizations that are focused on endometriosis. "There are answers and there is hope if others are suffering with disabling pain and symptoms from these conditions," says Lane. Dasgupta is actively researching how to improve medical facilities for the rare disease community, with a focus on accessible travel. "I want to put an end to the types of problems I faced during my diagnosis and treatment afterwards," he adds. This level of taking ownership over one's own circumstances is the type of self-advocacy that can be intimidating for medical staff.
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6. Sense of Clarity and Relief
Overall, people admit a sense of relief and clarity when they received their diagnosis. For Swanger, getting her neurodivergence diagnosis made it more clear why she struggled in every aspect of her life. Tran, in turn, experienced "lots of clarity after some grieving." Similarly, Lane shares she experienced an enormous sense of relief that there was a name for what she had been experiencing. "I also felt outrage that it took 20 years and dozens of doctors to receive my diagnosis," she adds.
Whether your condition is rare or gleaning, the clarity of diagnosis should not always take years. Shortening diagnosis times can improve the quality of life for so many. This reassurance would also give people a sense of restored faith and relief when answers finally come.
About the author:
Arielle Dance is a Content Writer at Diversability who identifies as a Black queer woman with disabilities. A Ph.D. in Mind-Body Medicine, Arielle is published on multiple online platforms and has a children's book, Dearest One, which focuses on mindfulness and grief.
The author thanks members of the Diversability Leadership Collective, Sai Kaustuv Dasgupta, Jessica Lane, Arwyn Swanger, Dennis Tran, and Emerson Wheeler