The following is a brief summary of a study looking at the experience of EDS patients when they have sought medical care in Utah. Told from the patients’ perspective, it is a preliminary assessment to begin to better understand the needs of the EDS patient population.
The study began with a brief questionnaire that was posted on the EDS Warriors of Utah FaceBook page in the fall of 2016. It invited stories of the diagnostic odyssey and care from the EDS community in any form the patients wished. Over 60 EDS patients and their families responded, and the final study was over 100 pages long. It was presented to administrators at the University of Utah Health Sciences in December of 2016.
The Odyssey of Finding Diagnosis and Care: The Personal Stories of EDS Patients and the Challenges They Encounter Seeking Medical Care in Utah
- A Summary -
The most significant finding of the study was the detailing of the many barriers EDS patients face when they seek medical care. They included barriers of access such as long wait times for appointments, poor financial coverage for tests, difficulties in getting referrals to appropriate specialists, lack of specialists with knowledge of EDS, lack of proper diagnostic equipment and lack of a clinic or program to direct and organize the multiple and complicated care needs of EDS patients.
To make the task more difficult for patients, the barriers they face also include the endemic lack of knowledge of EDS across the entire range of health care providers, and the misinformation used by many physicians to diagnose and treat (or deny treatment to) EDS patients. These result in frequent misdiagnoses and failures on the part of providers to ‘connect the dots’ to see the larger pattern of co-morbid conditions as a whole.
In the absence of conclusive tests for conditions common to EDS patients (causing such symptoms as severe pain, paralysis, blindness or disabling headaches, for example), survey respondents also reported multiple instances of physician’s disbelief and denial of their symptoms. Many physicians rejected outright a diagnosis of EDS as a possible explanation of the patient’s difficulties. When female patients suggested that from their own research and family histories they believed they had EDS, they were told by their physicians not to trust what they found from their ‘amateur’ research. Respondents reported that physicians frequently rejected or ignored a diagnosis of EDS from other physicians.
Patients also gave many, many examples of having their symptoms and their pain minimized, discredited or simply ignored. Many have been told that their symptoms are simply due to female hormonal fluctuations and nothing more. Many have been told that EDS is not a serious condition, and that it can even be seen as a social or athletic advantage.
Female patients also report a very high incidence of being diagnosed with various character and personality flaws and with psychiatric illnesses, even after having been diagnosed with one or more of the many co-morbid conditions of EDS or having been diagnosed as having EDS from a specialist. They report being told they are lazy, malingering, wasting physicians’ time, lying, “faking it,” hysterical, being functionally neurotic, etc.
While many EDS patients report having depression and anxiety disorders, (which may be more common with EDS patients), more than half the respondents reported being diagnosed with various psychosomatic disorders including, most frequently, conversion disorder. The frequency of this diagnosis is so high in this population of women that it is statistically improbable. These diagnoses are frequently given by providers who are not board certified psychiatrists. Patients report being given psychiatric diagnosis by rheumatologists, neurologists, neuro-opthalmologists, gastroenterologists and even physical therapists, among many others.
Patients reported many, many instances in which providers, particularly in emergency rooms, saw the psychiatric and personality diagnoses in their charts, and on the basis of that, withheld medical care. They described being left untreated and sent home with a psych referral and prescriptions for various drugs used to treat depression and anxiety, but with no medical help for their physical crisis.
The cumulative effects of being faced with these multiple barriers has been particularly negative for female patients. They described having “medical PTSD” from (in many cases) years of clinical and medical experiences that were not only ineffective but disconfirming. They described their doctor appointments as causes for stress and anxiety. They report an alarmingly high percent of their clinic appointments as being simply a waste of time, and worse. Rather than being dismissed, some say they have simply stopped seeking medical care altogether. Some reported that they have stopped telling their primary care doctors about their symptoms. Many reported waiting until they are in a medical crisis before they will seek care.
Stories of effective pain treatment were conspicuously absent from the respondents. Patients reported that their pain has been dismissed and minimized so often by physicians that they are afraid to ask for pain medication, afraid that they will be accused of drug-seeking, and afraid they will be told that the pain they are experiencing isn’t real. They prefer to go without prescription medication or get by on OTC pain remedies than go through the experience of having discussions about pain with their physicians. This is particularly difficult because pain is a cardinal feature of EDS.
Many patients and their families report leaving Utah to find appropriate diagnosis and care that they can’t find here. They are willing to endure financial hardship to find good care.
On a more optimistic note, some of the study respondents had praise and gratitude for a few physicians at the U of U who have treated them with compassion and understanding. They were willing to name those providers who have been helpful to them, and who have trusted them to accurately (and rationally) represent what their physical conditions are.
When answering the study question about what they wanted, the respondents universally said they want all their care providers to be more knowledgeable about EDS; they heavily stressed the need for education to everyone in health care settings.
They also want the U of U to purchase the equipment, such as a standing MRI machine and one that performs a digital subtraction myelograms, to make more accurate diagnoses of EDS patients’ comorbid conditions such as Chiari malformation, or CSF leaks. They want a better internal referral system.
Utah EDS patients want a central place (a clinic or service) dedicated to the care of EDS patients and a care navigator to help them manage their complicated, intensive and multiple medical needs. They believe they could actually reduce the cost of their care, and make it more efficient and effective, if they could have a dedicated team to help them manage their care. They are very aware of the extremely high cost of their care and believe that an EDS clinic could significantly reduce those costs and, at the same time, result in better care.
The study’s investigators, Justine Case and Michelle Hawes wish to thank the many people who responded to the initial pilot survey, and contributed to this study with their personal stories. We are in awe of their courage and perseverance, and we deeply appreciate their willingness to share their experiences. They have made a significant contribution toward better understanding of the medical needs of EDS patients.