Saturday, August 29, 2009

What is with the docs???

I thought with my daughters impending visits to Scottish Rite that I might benefit by asking what I can expect. So, I decided to ask one of our fellows... I don't understand why doctors have the prejudices about Ehlers-Danlos Syndrome that they have. When I said to him that I have EDS and that she is being worked up for it, the very first thing he said was "What, you have EDS? You must have the very mild form." Where did this judgement come from? I want to know exactly what is said in medical school that gives these doctors such a non-chalant attitude about EDS! No, my skin does not stretch 8 inches from my body, no I do not have major scoliosis or vascular EDS, but that does not mean that I am not plagued every hour of every day by the pain from EDS. I still have dislocations. I want to make them understand that just because I have a "milder" form does not make it any less painful! You don't tell a person with skin cancer "Well you just have skin cancer, it's not as bad as breast cancer." OR "You have a broken leg? It must be a really mild break." It's so frustrating! I just wanted to say "You know, I know you don't have EDS and I know you have a big ego, but just so you don't mistreat any of your future patients, here are the issues I deal with from my EDS, mild or not..."

Ok, I am not done venting, but that was exhausting, so good night...

1 comment:

  1. Crud, I lost my whole post just now. Basically, I feel for you. Docs can be sadly misinformed and we have to deal with the resulting frustration.
    Have you given your doc any of the Medical Resource Guides (MRGs) that the Ehlers-Danlos National Foundation produces for MDs and other health professionals? I bought a stack of each and keep them in my car so I don't forget to bring them with me to my appointments. I even give my primary care MD the MRGs that are not specifically related to my type because there is still useful information for the occasional symptom that overlaps (TMJ in the Dentistry one, heart problems in Vascular one). I can't seem to paste a link here so you here are the directions to get to the store... click on Store at top right
    Go to Literature then Brochures.
    You can order the MRGs by individual types or as complete sets (one of each type).
    I hope this helps a bit. Educate that silly doc. You really do know more than they do.
    gentle hugs,