The Good, the Bad and the Ugly….

Doctors are like lawmen- some are good, some are bad and some are just plain ugly.

I am lucky enough to say I have never had to deal with ANY in the ugly category, and so far, my dealings with the Bad have only been second hand.

My favorite Good Doctor is my neurologist. The one who put up with me being an insanely frustrating patient all last fall and into this winter. I presented as a classic Myasthenia Gravis Patient. Everyone was sure that was what was wrong with me. Even me. When test after test came back negative, he switched to the other likely candidates, and even the unlikely ones. We were to the point of last resort. He went to battle with my insurance company for tests they wanted to deny, when I uncovered the EDS link. EDS was well outside of his area of expert knowledge. He later told me they had a lecture or two on it in medical school and that was all he knew. Although he was starting to mumble about somatization disorder, when I emailed him about EDS, he was excited, positive and congratulated me on my good detective work.

When I recently had a “last follow up” to basically dismiss me, unless I develop pinched nerves or neuropathy, we spent the entire session with him eagerly learning as much about EDS as he could. He had frequently talked about the increasing number of frustrating cases that had some of my symptoms, or were sort of similar, but no diagnosis could be found. This obviously upset him significantly and now, presented with my data and experiences, he was happy to have another possible tool in his belt and an avenue to explore with some of his other “black hole” patients.

These are the good doctors. I do not expect any doctor to know everything. It is physically impossible. But the good doctors are willing to learn and change their learned paths when confronted with new information. There are actually a lot of doctors who fall into this category– they just have not had the exposure to EDS patients to learn. I am not sure why the EDNF does not put together case studies or patients as models on display and actively educate doctors.

Then there are the bad- a rheumatologist a family member crossed paths with falls into this category, as far as I am concerned. They are a good doctor, bedside manner, etc.. He treats their symptoms and helps with their pain. But when recently asked ( in light of my situation) if the problem could be EDS- he said- Yep, likely, but then wrote down “Connective Tissue Disorder” on the chart instead of EDS. Worse, he then proceeded to tell her that there are “lots of people out there with this- it isn’t really rare, but unless someone is really bad we do not call it EDS, or else people freak out”. He then also proceeded to tell the story of an olympic gold medalists who he was sure had EDS- as a means of re-assuring her.
This makes me want to rant in ways that are less than polite. Let me just say that I find this not only immensely patronizing and patriarchal, it also skews all of the research and medical data on the disorder. I agree that this is not a rare phenotype, and it covers a range of expression. But how are people supposed to figure that out unless you show them the real range? If an Olympic gold medalist can have EDS- does he not think this would help and inspire others with the condition? Wouldn’t this help to prevent people from “freaking out”? Wouldn’t researchers want to study him as well- to see how/why he is different and stronger than EDSers who can not walk? OIY.
That is enough of my ranting- I would love to hear your experiences or examples of the good, the bad and the ugly in the comments below.

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