Voices of pain patients

https://findingoutfibro.wordpress.com/

When I first gathered the courage and research needed to talk to a doctor about Ehler-Danlos Syndrome, her immediate reaction was to call me fat. Yes, really. She looked at me, puzzled, and said, “Isn’t that a disease for tall and thin people?” and I had to bite my tongue, hard. I also had to accept that she was not going to help me with this. Not now, and not ever. She simply thought I was nuts, even though I match 100% of both diagnostic criteria. It was humiliating, I felt lower than dirt and like maybe she was right, maybe it was all in my head, I was making this up for attention or so I didn’t have to work anymore. She had me so confused at a difficult time in my life when I didn’t realize that pain affects cognitive abilities, and she definitely abused her position of power as a doctor, numerous times. I started to internalize all her comments about my psychiatric health, personality flaws, and physical unattractiveness. I lost trust in myself completely because I thought I was either dying or a liar, and I couldn’t figure out which one…

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4 thoughts on “Voices of pain patients

  1. She couldn’t have been a specialist in Ehler’s Danlos. If you go to their foundation, there is a list of physicians that specialize in Ehler’s Danlos. I have their link on my ‘iamnotsickboy.com’ site. You are not a liar. You are seeking the truth and it is your right to be diagnosed and treated! Don’t give up!

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