From the time I was a small child I always felt tired and unable to keep up with the other children. I did not think much of it though, I just thought that is how everyone feels, and it did not stop me from having a normal childhood. I was in all sorts of sports and activites. When I became a teenager things started getting harder.
When I was about fourteen, I began having bad back and joint pain that got so bad I would spend days just laying on the floor wondering what was wrong with me. Even opening a drawer or reaching out in front of me could throw out my back for weeks. We did not know what was wrong. The doctors did tests but nothing showed in my blood.
Finally, when I was eighteen, I had an MRI of my back done and it showed I had bones starting to fuse. Other than that they said nothing was wrong.
I went on feeling pain throughout my body. People would ask me what exactly hurt, my muscles, joints, bones? But I didn’t know what to say, everything hurt. I thought I was going crazy. I am only nineteen, but somtimes I would ponder on how wonderful it would be to have a cane. I get numbness in my legs and it is difficult to walk in the morning but the doctors just said I needed to drink more water and began having me drink a gallon a day saying I am perfectly well.
People had been telling me about EDS for a while and so finally I went to a clinic and said I was there to get evaluated for hypermobile Ehlers-Danlos syndrome (hEDS) and thankfully they were willing to look into it and get me diagnosed.
Now it feels like I am diagnosed with something new every time I go: POTS, MCAS, hypotension, accessory bones… But to have the relief of knowing I am not crazy and that what I feel is real is very validating and consoling. I struggled much through my youth with depression because I could not understand why I was not normal and able to function properly but now I can move forward.