Thursday, May 20, 2010

No One Needs EDS Awareness More Than Doctors

"I don't get it. I mean, I've had less than helpful doctors in my life, but none have denied the existence of my conditions or symptoms or refused to help me feel better. Why do you suppose you and others have been treated this way?"

So asketh Ashley.

Ignorance is the biggest problem.

It's classified as a rare disorder so doctors aren't familiar with it. They haven't heard of it, aren't really sure what it is, don't know how to manage it. What information they do have is often incorrect. The ignorance of Ehlers-Danlos Syndrome is so profound that parents have had their children taken away on suspicion of child abuse.

Why does this happen so much with EDS as opposed to other disorders? EDS is a disorder that is almost as invisible to doctors as it is to the average person walking down the street.

Despite causing intense pain, x-rays, CT scans and even MRIs of the average EDS patient are clean. There are no inflammatory markers in the blood most of the time. The number one sign of EDS, hypermobility, is overlooked by doctors. Dysautonomia, another common complication is also unable to be detected by the average tests.

This means that the only way for doctors to diagnose it is to recognize it. But as I've just mentioned, most of them don't. Even those doctors who have heard of it tend to not realize how serious it can be.

A lot of doctors (dare I say most?) are arrogant creatures. They think their mother was a wood nymph and their father was Zeus, making them demigods. I have never once had a doctor say to me, "Yvette, you know, I really don't know enough about EDS to properly treat you."

Instead of admitting they lacked the experience to care for me, they would act as if there were no such thing as EDS. When I look back at the most heinous doctor's appointments since my diagnosis, all the doctors involved treated me as if EDS didn't exist.

When I told the internal medicine doctor I saw during my last hospitalization that the early satiety and delayed gastric emptying I was experiencing were related to my EDS, she sent me a psychiatrist whom she told I was anorexic.

When I went to a rheumatologist seeking help for my increasing joint laxity and pain, she treated me as if my only problem was a bad attitude and laziness and at one point told to follow my mother's lead and get a job. (I find it ironic that she acknowledged the fact that my mother also has EDS, if only to deride me further.)

Lastly, doctors don't want to treat pain. They really don't. As a young Black woman, I fall squarely into three categories of people who tend to have their pain underestimated and undertreated. When I had to go to the ER with 9/10 pain that wouldn't let up no matter what I tried, the first thing the doctor said to me was, "Ehlers-Danlos doesn't cause pain."

"That's not what my doctor told me," I said through gritted teeth. Chastened, he said, "Well, how is this diagnosed?" In saying so, he indicated that he didn't know much at all about EDS. But he thought he'd try to tell me it doesn't cause pain.

This reluctance to treat pain often has consequences. In my case, my rheumatologist was so focused on not treating my pain that it took me four months (and a different doctor) to find out that the pain in my hips was coming from bursitis. Once I got a steroid shot in either hip, I was able to walk much easier.

This entry has gone on for longer than I expected...but does that kind of give an idea of why doctors might behave the way they do? May is EDS awareness month, but doctors need awareness more so than anyone else, for the reasons I've mentioned here.

I can only speak for myself, but I have heard similar stories from others people with EDS. I feel that many people are similarly baffled as I am.


Anonymous said...

I'm off facebook - are you still going to ednf conf in july? jilly

Yvette said...


Yes absolutely! I saw you were off and I was worried about you. Do you have my e-mail?

Anonymous said...

Cool! Yes - emailed.

loveable_homebody said...

Ashley here! Thanks for the detailed answer to my question and the link to my blog!

I think when we say "invisible illness" it encompasses more than what we see by looking at a person. It involves what isn't easily found through medical tests. Unfortunately, if there isn't an easily detected problem, doctors don't always seem to be interested in helping or even doing further investigation. I agree, I think part of it's arrogance; I also think a lot of doctors are more in the business of treating than caring. If it's not potentially life threatening, at least according to their perception, you might have to fight harder for treatment. It seems to me that your doctors were more willing to believe the tests than your narrative.

I also have a couple of little-known conditions. It can be very frustrating when only your specialist understands your condition... Otherwise, you have to educate doctors who may be... well... Less than willing to listen.

I'm taking a break from a Public Relations certificate... I really want to work for a not-for-profit organization dealing with social health issues in an awareness and engagement capacity. These organizations educate the public, doctors and other health professionals -- and even the government about conditions, and they also provide support to those affected. Do you have an EDS organization in your country or local area? I think you would be great at doing some advocacy.

I think it's great you are so informed about your condition and are doing what you can to help yourself.

I will continue reading your blog, of course! I want to know how you're doing!

8Bit-Emma said...

I don't understand what happens to doctors and nurses when they finish their training and go out into the world that makes them just seem to stop learning or questioning. Not all of them are like this, but I think your description of them as demigods (which made me laugh bitterly, but it was soo good) is accurate.