After my article made the front page of AOL last week, I did the one thing you’re not supposed to do. I read the comments. Like all of them.
And one pattern I kept seeing was that people were cheering me on about saying doctors are worthless, money-grubbing jerks who could give about as much of a crap about their patients as they do about their ugly red-headed step-children.
And at first I was like…
And then I was like, I should probably clear this up.
I realize while I may have regaled you with one or two or seven stories about doctors who done me wrong, I don’t by any stretch of the imagination think that ALL doctors–heck, even probably the majority of doctors are money-grubbing jerks.
Yes. It was the fault of multiple doctors that I was ignored and misdiagnosed numerous times, but I played a healthy part in not advocating for myself when I was younger and there really was no giant, flaming neon sign on my forehead that said “PRESS HERE TO DIAGNOSE RARE DISEASE.”
It can be said about anybody in any field. There are bad teachers. Bad salespeople. Bad presidents. Skill varies. Expertise varies.
You can’t hate on the entire profession just because someone got lazy and decided to mislabel you as insane and totally axe your self-esteem for years. It’s just life. And it’s why I’m working with the Global Genes Project–to help better educate everyone from patients to families to doctors and law-makers that rare disease happens. Is happening. And we have to look harder. We have to be better, for the sake of all patients.
I still really believe that all people, even doctor’s with swimming pools to pay for, are not inherently evil. They’re just uneducated and misinformed.
I think rule number one is do no harm. And I believe that most of them are genuine when they make that pledge. I don’t think you put your entire life (as doctors really must do) into your career and practice if you don’t really care what the outcome is for your patients.
I know this probably sounds like a load of crap to other ignored, misdiagnosed patients. I know there’s a lot of anger there. A lot of hostility. Believe me, I’ve felt it. I’ve definitely done my fair share of cursing out physicians and crying in waiting room bathrooms after a particularly gut-wrenching exam–but through it all, there have been enough doctors along the way for me to know that even though they couldn’t, they wanted to diagnose me. Sometimes the knowledge just isn’t there, and raging on every dude in a white coat who said he couldn’t help you isn’t going to make things better.
Here’s what you can do instead:
1) Make a promise to yourself not to settle for a life of pain and confusion. You will get answers if you keep moving.
2) When you do get diagnosed, write a letter to your past physicians letting them know what you were diagnosed with and offer them educational material from different disease related organizations.
3) Do your part in helping patients become more aware. Share your patient story with Global Genes so that others can recognize the symptoms and get answers.
4) Advocate for others you know. Take your fight to a personal level and make sure friends and family know you’ll be around to attend doctor’s visits with them should they ever need a second voice to speak for them.
And when the doctors get you down– just pan left to the camera, baby.
We know what’s up.