For how much I know about EDS. I've asked countless doctors about it, and they knew very little about it, if they had even heard of it. Yes you read that right. Tons of doctors have never even heard it. I thought doctors, being in the field of medicine which is always growing and changing, had to keep studying, researching and learning. To me, its part of their job description. Yet so many of them don't do this. It really makes me wonder if those that don't keep learning, and researching new things are just so content handling the normal things and treating colds that if a "difficult" case walks in, they already know they don't want to deal with it..
Now, obviously there are great doctors out there. But it seems they are the exception. There are way more content doctors out there. And its hard for the patient to have to sift through.
Especially if/when we find those that instead of just saying they can't help us (by lack of knowledge, jurisdiction, or they just don't care to), and they label us as crazy or psych cases rather than admit they aren't "all knowing and powerful".
Getting these labels of crazy in our medical records makes finding a doctor (good or bad) to listen very difficult. They treat us like we are crazy, drug seeking, attention seeking, hypochondriacs , etc.
Every time I walk into a new doctors office, I know I have to look the right amount of sick and right amount of well. I have to convince this new doctor that there IS something wrong, and I NEED help! I have to sell them on my case. Its exhausting, stressful and usually a let down.
I've been so "over" doctors in how they treat me and dismiss me. I just stopped going for awhile. And that isn't good. Because I need help. But when I feel no one is listening, it just makes me angry! And it makes question my own sanity. I start wonder, am I just crazy? Are my symptoms real? Is my pain real? But then I remember the one test I've had that always reassures me. I had my neuro exam and they were checking my reflexes. Simple enough. But it wasn't working. I lost all of my reflexes except for one. Only my right knee. And that was only a little. None in my arms, ankles, left knee. Nothing. My leg just hung there. And that always reminds that its not in my head. There is absolutely no way I can control a reflex. By the very definition of the word.
So with all these mediocre or even worse doctors out there that just weren't interested in helping me, I took to the internet and books. I've read almost everything I can on the subject of EDS. I now know more than my doctors. And that is just on researched material.
I often feel as though those with a chronic illness, regardless of what it is, should be honorary doctors. We LIVE with it! We know more than any doctor could.
I don't know about you all, but when doctors tell me pain isn't associated with xyz, I just laugh. Where did they get their information? Not medical journals. Because I've read those. How old is their information?
I just know that I know soooooooo much about my condition now, that I am starting to look down on doctors. Just like they do to me.
So where is my honorary degree?!
Have any of you noticed similar situations? Comment below!
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