My journey started as a kid but I was always told it was ‘growing pains’, until 2012 when things took a major turn for the worse.
I was in and out of the Emergency Room and my college health clinic, but no one knew how to help. I had excruciating pain, frequent dislocations, and a myriad of symptoms. Still, doctors told me “Go home”, “There was nothing I could do” and I was a “Black female who wanted attention and had conversion disorder.”
So eventually I stopped coming to the doctor for the dislocations, the pain, and joint issues and just worked out through the pain trying to make my body stronger and be as fit as possible.
However, one day I dislocated my hip while running and injured my hand on the job so bad I had to do months of physical therapy to regain strength. Eventually, the physical therapist told me I was extremely hypermobile and that I for sure had generalized hypermobility or maybe something more.
Fast forward and this continued, but in 2019, as my pain and dislocations got so bad I had to use mobility aids, my Primary Care Physician (PCP), a Neurologist, and another specialist believed me and said I definitely had hypermobile Ehlers-Danlos syndrome (hEDS) and was surprised I wasn’t diagnosed earlier.
After all that time I had answers! Then more answers and more and I got a myriad of diagnoses.
My doctors coordinated to get me a custom wheelchair which has allowed me a whole new sense of freedom and are working on braces to help with other issues.
If it wasn’t for my fantastic PCP and specialist in the last 3 years I don’t know where I would be, especially as a person of color. I experienced many doctors say I was med seeking, or abusing the emergency room.
I am a huge advocate because of my experience and their work has helped me continue my job as a mental health counselor!
