MW Web banner-1.png

Blog: Living Mighty Well

Spoonie Stories: Advocating for People with Disabilities

Miranda has 68 formal diagnoses including Ehlers Danlos syndrome, Dysautonomia, POTS, MCAD and Gastroparesis. Here is her story.Miranda has 68 formal diagnoses including Ehlers Danlos syndrome, Dysautonomia, POTS, MCAD and Gastroparesis. Here is her story.

 I’ve fought through joint surgeries, and worked my way up from a wheelchair twice: each time I had to learn how to walk once again. My joints dislocate very easily and are very painful. I do not regulate my own temperature, often overheating to the point at which I pass out. My heart beats way to fast, and when I stand, my blood pressure drops dangerously low, causing blackouts, dizziness and horrible cramps. Triggered by my body sensing there isn’t enough blood; these low-blood-volume cramps are so strong they can rip muscles, dislocate joints or even break bones.

I have good days and bad days causing most people to not believe I’m so sick, even when they know I am. Seeing me walking one day and in a wheelchair the next makes people think I’m faking. We are all warriors, and survivors, but most importantly, we are all human beings.

The following videos are from my presentation on the social stigma surrounding disabilities of all kinds. The context of those videos is that I, myself have been treated badly because of my disability. (I'm the young girl with black curly hair in the videos.)

Screen_Shot_2016-10-05_at_3.03.04_PM.png

 

Screen_Shot_2016-10-05_at_3.06.06_PM.png

Recent Posts

Posts by Topic

see all