Dear Doctor: Don't Be Afraid to Acknowledge the 'Zebra' in the Room

I am sitting in your office, or the emergency room. I know that, chances are, before you walked into the room you looked at my chart. I know my chart can be overwhelming; between my diagnoses, my medications, my allergies and my past testing it can be hard to decide on what to look at first.

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

You come into the room and introduce yourself, and within the first couple of minutes you ask about my medical issues and I quickly rattle them off: Ehlers-Danlos syndrome, seizures, Cauda Equina syndrome and post-traumatic stress disorder (PTSD). Chances are I am sitting in front of you because of some complication from my Ehlers-Danlos syndrome. Within a couple of minutes I quickly get a feel for what type of doctor you are. You are the type that is afraid to utter the words “Ehlers-Danlos.” You continue on in the conversation with care to not mention anything about my EDS. You may even completely ignore the fact that my dislocation is because of my lax joints.

After all the years of dealing with medical professionals I understand why it may be scary to talk about Ehlers-Danlos. We are a rare diagnosis – one you often don’t see. I may end up being your only patient with EDS. I understand we are incurable. I also understand that treatment is hard, as every single one of us has our own set of complications. I know many doctors go into medical school to heal people. But you can’t fix me. When I leave your office, I will go on fighting a battle with EDS that leaves me living with an unnatural fear.

But it is not OK to ignore this elephant (or more rightly so, the zebra) in the room. EDS is invariably a regular part of my life. My every move is carefully planned to not cause a dislocation. On good days I have to remind myself to take it slow so that I am not paying for it the next day. I get it – you’re scared, you can’t fix me – but please, utter the words Ehlers-Danlos. By prancing every which way around saying it means you’re not acknowledging the fact that I am fighting this battle. It discredits something that is part of me. EDS has caused my life to veer off in a direction I didn’t expect. I had to leave behind my dreams of becoming a doctor because of it, I had to face Cauda Equina syndrome and even experience being two steps away from death’s door. It’s caused me to experience every emotion imaginable: sadness, joy, fear, loss – just to name some.

So please, I am asking you, stop ignoring the zebra in room and please acknowledge my diagnosis, Ehlers-Danlos syndrome. It will go a long way with building trust.

Thinkstock photo via Peerajit.