Warning: mentions suicidal / trauma
In case you missed this paper (below) it is about traumatisation of people with hypermobility Ehlers-Danlos syndromes (hEDS) or Hypermobility Spectrum Disorders ( HSD) and we believe this happens for those not formally diagnosed osymptomatic hypermobility or are children but disbelieved by those in privileged positions such as medical health care practitioners.
It is an an important paper but the issues are not new to many of us and we receive many, many harrowing accounts which are generational. The issue of trauma and disbelief experienced by individuals with hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD), or symptomatic hypermobility is a significant concern. Patients with these conditions often face skepticism from healthcare professionals, leading to unmanaged pain, anxiety, despondency, and even suicidal thoughts.
There is typically a significant delay in diagnosing hEDS and HSD, with an average of 14 years between the onset of symptoms and diagnosis, but we have members still being diagnosed, in their 60s after decades of other diagnoses but no understanding of what was happening to them or why. Sometimes extending beyond 28 years. These delays often result from a lack of awareness and understanding among healthcare providers, leading to misdiagnoses and inappropriate treatments. This exacerbates both physical and psychological suffering, underscoring the necessity for improved education for medical professionals.
Many people are not allowed a diagnosis as most tests come back negative. These are a handful of common responses many people face :
This diagnosis is 'too trendy'
You already have other diagnoses like ME/CFS Fibromyalgia IBS, why do you need another one?
So you think your child is ill (again)
We do not believe your child is ill but is neurodivergent
We are concerned about your child(ren) and alerting safeguarding
Do you not like your job?
You are just overweight.
Your are just underweight
Neurodivergence is separate from physical health
Everyone has aches and pains at some point
You are too young to have a chronic illness
Your are too old to have a chronic illness
You are just anxious
You are Autistic, ADHD so we can put in place social emotional and mental supports, cbt and mindfulness for this
You are just a bit sensitive
Why does it matter ?
Quotes from the paper:
that they had previously been suicidal as the result of unmanaged pain for which they felt no hope of treatment and for which they felt too despondent and anxious to seek further care’
These individuals felt that clinicians acted overzealously in their role as gatekeepers’
The psychological toll of disbelief and inadequate care is profound, with patients frequently reporting feelings of despondency and anxiety, which further discourages them from seeking necessary medical care, like a flight/fight response. This creates a cycle of neglect and worsening symptoms that severely impacts their quality of life.
by J Green MBE Chair www.sedsconnective.org
Read more here : https://www.sciencedirect.com/science/article/pii/S2667321523000215
Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes
Authors- Colin M.E. Halverson , Heather L. Penwell, Clair A. Francomano