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To the Doctors Who Are Uninformed About Our Illnesses and Won't See Us

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“She won’t see me.”

“What do you mean she won’t see you?” I ask dumbfounded. I recently recommended my rheumatologist to a friend with Ehlers-Danlos syndrome – hypermobility type, a disease I was diagnosed with a year ago. “She says she won’t see me unless I have a genetic test proving my diagnosis.”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

“But they haven’t found all the genetic markers for hypermobile EDS!” 

I am beyond frustrated at this point. The top geneticist in my mid-sized Midwestern city has told me this before, too. I’ve traveled to EDS learning conferences and met with the doctors who created the diagnostic criteria for EDS-H, I’ve donated my DNA and photos of my facial structure to studies attempting to pinpoint genetic markers, I watched live as doctors announced the results of their May 2016 symposium to define the diagnostic criteria for EDS-H; heck, I’ve read the Wikipedia page that says, “Negative genetic test results do not rule out the diagnosis, since not all of the mutations have been discovered; therefore the clinical presentation is very important.” Yet, I continue to meet doctors who won’t treat us without a positive genetic test result. 

I know in many ways it is good that those doctors won’t see us, because who needs a doctor that won’t do the research or won’t listen to patient concerns? When I lived in New York City or Los Angeles, I probably would have shrugged it off and said, “Find a different doctor.” However, since moving to a much smaller market, this has become a much bigger problem. When the two well-known geneticists in your area, who everyone else refers you to, won’t peruse the documentation or research on the Ehlers-Danlos National Foundation website, you can feel lost. Alone. 

There were even times I wondered if I was crazy. I felt medically gaslighted; I wouldn’t go to doctors for my symptoms because I was sure it was all in my head. The shame around my illness grew. I felt if only my meditation practice was stronger or I smiled a little brighter or exercised a little more, I would be better. I feared that EDS sentenced me to a life of painful facades and condescending judgment.

Thankfully, my will to live a quality life peeks through these bouts of depression. Thankfully my Googling abilities have helped me find geneticists in neighboring states who are aware of my illness and respect my input. Thankfully I have resources, insurance, and support that have allowed me to go to said doctors. Thankfully, today I have one or two doctors who know and trust me and can tell me when a symptom is concerning and when it’s just irritating. They give me light and hope and answers in a sea of confusion and shame. 

However, some people don’t have the time or resources to find attentive providers.

To doctors treating the chronically ill, I know it must suck. Answers are murky, insurance companies are difficult, and I have no idea how you identify the actually ill from the addict or the physically afflicted from the stressed hypochondriac. However, I implore you to be willing to be wrong, be open to new information, and reach out to colleagues when you are under-informed. You went through a bajillion years of schooling and grueling internships to make a difference in the lives of your patients. The way you make a difference isn’t by knowing everything, it’s by listening. Please be willing seek first to understand. 

To the chronically ill: It’s OK to keep looking for a doctor. You are not crazy. Find a doctor who makes you comfortable. Find a doctor who is confident enough to say, “I don’t know, let’s find out…”

Originally published: October 6, 2016
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