If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder?
Dysautonomia occurs when the autonomic immune nervous system– which controls involuntary functions like breathing and heart rate– is impaired.
Many patients report their health care providers take the attitude, “If I haven’t heard of dysautonomia, it mustn’t exist.”
This disbelief results in the patients being treated as if they are exaggerating or lying about their symptoms. And it doesn’t help that most people who are symptom-free have never heard of dysautonomia, either.
Dr. Rebecca Fox, who suffers from dysautonomia, understands the difficulties faced by patients who are seeking treatment. Dr. Fox was one of the lucky few who recognized the underlying cause of her symptoms and was able to receive specialized care for her dysautonomia within weeks.
For most people, it takes an average of six years to be correctly diagnosed and begin treatment.
As an active member of several online communities for people with autonomic dysfunction, Dr. Fox noted a common theme among posts from other patients—they aren’t believed, and are often blamed for causing their symptoms.
This results in an even longer path to diagnosis, and with disorders like postural orthostatic tachycardia syndrome (POTS), and Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome), the delay translates into months or even years of living in pain.
Thanks to social media, disgruntled patients have found some recourse.
Many patients with rare diseases find their way to online support groups, where they can share their stories, successes, and also their complaints.
Dismissive doctors are often called out by name, and in these tight-knit communities, a practice can quickly be blacklisted by dozens of potential patients.
In a community of people who often feel marginalized by the very people who are meant to help them, it can be cathartic to rant about a doctor who scoffed at their symptoms. The simple act of listening to what a patient has to say can make a world of difference, both to the patient seeking answers and to the doctor whose reputation may be at stake.