Living With An Invisible Illness


Living with an invisible disease and still striving ahead.

I was diagnosed with Ehlers Danlos Syndrome when I was 25, which when they told me this it could have been spoken to me in sign language or any other language. It made no sense to me and I had no clue what that disease was. After I left Cincinnati Children's Hospital, which is an hour and a half away from my hometown in Columbus. I went home and I didn't even bother to look it up online to see what it meant. A year later, my Mom was diagnosed with it and she started to research it and because she started to research it I started to learn more about what it was about and what it did to my body. Of course it affected my body differently than hers and vice versus. I started having surgeries when I was 16. My first surgery was a left knee surgery and it was to correct a dislocation that I continued to have. 
I started to have dislocations when I was 12, at least I remember having them at that age. I played a lot of softball at a young age and was catcher for a few years, which probably did not help my knees and other joints. Once I had my first knee surgery I whirlwind of emotions and a whirlwind or things started to happen. The years after that surgery start to blend together. I started to have knee surgery after knee surgery, back surgery after back surgery. Neck surgery after neck surgery. And here we are at 2012 and I have had 40 surgeries and 12 more pending and no end in sight. We are correcting things that shouldn't of happened and correcting things that my Ehlers Danlos Syndrome, or for short EDS created. 

Besides the dislocations of every joint that EDS creates we also get other diagnoses or symptoms as we call them such as osteoporosis, I never thought at 29 I would say I have arthritis and osteoporosis, which I have had since I was 19. I also have heart issues such as sinus node tachycardia, atrial fibrillation and the doctors suspect POTS which is another heart aliment. 

Its been a long road. I never thought my life would turn out this way. I have been lucky though in my eyes. I have a great group of friends who are by my side and they drag me out if I am feeling down or come to me if I can't come out. I also know that without this illness I wouldn't of became who I am today. So regardless of the surgeries, the constant doctor appointments, and the constant medical tests I am content with how my life is. I found an outlet that I never would have found had this not happened. And I have met a lot of great people throughout this crazy ride we call life. So even though my life isn't ideal it is still mine and not even EDS can take that away from me.