I had almost given up hope in doctors until you reminded me there are actually still doctors that want to advocate for us and not have to do it for ourselves. Everything I had been begging other doctors to do or help me with, you offered first thing without me asking. Because you did this blood test that every other doctor declined, I now have more answers and proof of my problems.
You listened, you validated, you backed up with research, if you didn't know something you told me and that you would find someone who did, you believed me, encouraged me, reassured me, did an actual physical exam, wrote me prescriptions for medicine that actually works, made sure every topic or question was answered, and that we had a plan before leaving your office.
If only I had you years ago when I first started this journey with pain and symptoms. I thank you. I know it's not easy to be a doctor this way, it's not the norm. I think about all the things I wouldn't have if you were my first doctor. I wouldn't have white coat syndrome every time I go to a doctor. I wouldn't have disbelieved anything was wrong or that it was in my head or just "stress" or a diet would cure me. I wouldn't have done so much wear and tear on my body and knew how to take care of and prevent further issues. I wouldn't have toughed it for years thinking pain was normal causing even more damage on my autonomic, nervous, and vascular system.
I know you understand because you were me. You had to experience this yourself. When I told you my health problems, one by one, you had identical; even the misdiagnoses, scary pregnancy, and multiple surgeries. You learned what doctors to go to because you went years going to the wrong ones just like I wrote about in this letter.
I was hoping for answers, but I was not expecting everything else with you. I was not expecting to find a doctor who would actually teach me something and not only have answers, but wanted to get me answers and action immediately. Someone to be my advocate. Sharing the disbelief why doctors hadn't helped me in the past, but comfort that I now had someone on my side.
Doctor, you have not just given me hope again for myself in the medical community, but hope for my daughters who could inherit these problems. I was able to ask freely questions for them and wasn't laughed at for doing so, but encouraged to continue and given helpful tips because you have kids and they've experienced. I got answers for them and validation as a mom.
I will never be able to thank you enough for how you've changed my life. I just hope together we can change the typical doctor experience. To also make it so that an EDS patient does not go 20 years and 20 doctors before a diagnosis.
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