There’s a lot floating around on the Internet about the importance of self-advocacy, and I see a lot about what that can look like, but not so much about what to do when everything goes wrong. I answer: What is your biggest regret? What is a common miscommunication? What is a recent success?
Thank you. I am so incredibly grateful for not only the high quality care I've received during my time here, but also for the little things you do, the things that make me feel like a person, not just a patient.
My life will forever be changed by Ehlers-Danlos Syndrome and its sister diseases. I will never be able to go back to life the way it was a year ago, and I had to mourn that life. I had to face the reality that I may never dance again, that I would have to put work on hold, and defer my university studies. I had to confront my fears that maybe this was psychosomatic, that I really just had Munchausen's and was somehow making myself sick on purpose. But I had to stop grieving, because I needed to fight for just a little longer.
A bit of a ramble about my rheumatology appointment, how to be a good doctor, and how to be a good patient.
This morning, I woke up at 5am. Normally, like any young adult, my reaction would be to groan at waking up at such an ungodly hour, but today I was ecstatic, I slept for five consecutive hours last night! After the week I've had, where I've been lucky to get an hour total, it felt absolutely amazing to get some proper sleep.
My pain reached the point where I was actually in tears, struggling in vain to convince myself that I was fine, hoping that if I just told myself to be strong it would go away on its own. Luckily, I have some amazing people in my life who know the difference between when I'm being brave, and when I'm just putting on a brave face.