Imagine having a disease where 99 percent of the population has never heard of it. Now imagine included in that group are medical professionals. Or if they’ve heard of it, it was just briefly in school, not since then, and now you appear like a sparkling zebra out of a story book. This is my life.
I have Ehlers-Danlos syndrome (EDS), and basically this means that due to a genetic defect in my collagen, I have all-over weakness, joint instability, severe pain, fatigue and multiple comorbidities. EDS literally effects everything in my body from my skin and my blood vessels to my digestive tract. Even though I have shown signs of EDS since infancy, it took 32 years for me to get a diagnosis. Living with pain is something I have unfortunately gotten used to over the years. From eight surgeries forendometriosis and my gallbladder (endometriosis can be associated with EDS), to daily back and joint pain from my hypermobile joints that bend the wrong way and can sublux at any time (ever sublux your shoulder while sleeping? Good times!).
The one thing I will say has been harder for me to accept as someone living with an invisible illness is the lack of knowledge and understanding from just about everyone. If I only had a dollar for all the nasty stares I get when I pull into the handicapped spot, using my placard that my doctor approved for me. Or the comments “You’re too young to have so many problems.” “You look fine to me,” said by a doctor! “You need to eat a steak,” said by a rude older man at the grocery store, in reference to my small size.
Recently my husband and I packed up our family (two pit bulls and a kitty) and moved to Florida in hopes that the warmer weather would help. In trying to find all new doctors, I yet again was faced with a challenge of being a zebra in a herd of horses. In medical school they teach an analogy: When you hear hoofbeats, think of horses not zebras. This is to teach doctors to think of the most common things first. But zebras do exist, and this is why the zebra is the mascot and ribbon color for EDS.
After being outright denied by some doctors, without even an explanation, I finally was offered an appointment with one, and I was nervous but hopeful. This doctor came into the room and couldn’t pronounce Ehlers-Danlos! He made several incorrect statements about my disease and after a short while, when I was certain he was going to be yet another one of those doctors who saw me as a faker, drug seeker, and who was clearly uneducated and unwilling to help me, I left as quickly as I could. I had to pull over a block away because I was sobbing. How is it that medical professionals don’t know what to do with me? Why can’t someone help me?
Later that day my phone kept ringing. It was that doctor’s office. They called and called. Finally the next day, the doctor left a voicemail. When I called back, he admitted that he didn’t know about EDS; they only learn very little about it in school and it’s rare to ever see it again in practice. He had researched my condition and was willing to keep learning in an effort to help me manage my symptoms and live a better life. I can honestly say this has never happened before. I’ve been told by many doctors they can’t or won’t help me. I’ve been told (pre-diagnosis), “You probably have that, but no point diagnosing you, because nothing can be done to help you.”
I couldn’t believe what this doctor was saying in some respects. Yes, I was very, very aware of the lack of knowledge and understanding of EDS among the medical community. But for him to actually admit it and say to me that he wanted to help me, wanted to do more research in order to better care for me, that was shocking. No doctor had ever said that to me before. None had ever expressed a desire to further their learning in order to help me. Why aren’t there more doctors like this, I’ve thought? Why aren’t others willing to learn to help their patients?
So needless to say, the doctor that made me cry in my car, that I thought was just another doctor who was unwilling to understand, has become my new doctor. I was so wrong about him and I’m so glad I gave him a second chance and thankful that out of the tons of doctors I’ve met, I’ve finally found one willing to help me. It also makes me sad, not only for me but for the thousands of others out there that suffer from EDS, that this is such a shocking occurrence. In my opinion, this should be the norm, not the rare. It’s almost like finding a doctor willing to help a zebra was like finding a zebra of my own. So very hard to do!
I finally felt like someone understood after talking to my new doctor. He now gets just how hard it is for someone like me (and the many others who suffer with EDS) who go for years being told they’re either faking or misdiagnosed. No one should have to go 32 years to get a diagnosis because the medical community lacks knowledge in their disease. It’s an amazing feeling to know my search is over. Years of always searching and holding your breath, each time you see a new doctor. They label you a “doctor shopper” all because you have your best interest at heart and you see doctor after doctor, looking for someone who understands, someone who treats your condition and is willing to help you.
It is my wish that everyone who doesn’t know about invisible and rare diseases educate themselves, and learn that they do exist, and to be sensitive to people suffering from them. The judgment and lack of understanding hurts so much deeper than the physical pain. I hope one day our doctors and nurses will be better educated on rare diseases. My story is not unique. For all the other zebras out there who share a rare disease, please keep looking. Your doctor and support system is out there, too. We all have to be there to help each other. Don’t give up. Help is out there.