How it started

Two years ago I was diagnosed with Ehlers Danlos Syndrome. Growing up I always had weird medical problems that no doctor could ever figure out. I was just called "the medical mystery" or doctors would say "she's just weird, we don't know how to fix her". I was always really frustrated growing up, I knew there was something wrong but no one ever believed me. I was told by doctors that my symptoms didn't make sense and that I was making it up to get attention. When I was in 10th grade I had to get shoulder surgery because my shoulder was dislocated and wouldn't go back in. In 2012 the same shoulder dislocated through the back. I then had 6 anchors drilled into my bones. I had hip problems for years so I finally went to a doctor. He told me he didn't see anything wrong with it and sent me to a physical therapist for snapping hip syndrome. The physical therapist told me he didn't agree with that diagnosis because I wasn't able to do any of the exercises. He said that I reminded him of someone he knew with a rare medical condition called Ehlers Danlos. I had never heard of it. I went home and researched it and it was like all of the puzzle pieces finally came together. I then got a confirmed diagnosis in 2014. At first I was almost relieved. I didn't feel crazy anymore. I always knew something was wrong with me but now the doctors finally knew what it was and knew I wasn't making anything up..not that I didn't enjoy being called a hypochondriac. Then once the relief wore off I fell into a depression. This syndrome is horrible and painful. My joints  slide in and out, my muscles feel like knives are being shoved in them, I have no energy. I can sleep all day and still have no energy. I feel like it started to take over my life. I became someone completely different. I feel like I lost myself through all the pain. The simplest things are so hard:getting out of bed, showering, making it through a day at work. It's hard to imagine living a life filled with pain that no one can stop. My fingers started to become disfigured, I have had two shoulder surgeries and a hip surgery. I fee like I am falling apart everyday. This is not just a syndrome that causes you to be flexible. It is painful, crippling and extremely hard to cope with. Every day I struggle to do normal things. Every day is hard. Every day is a struggle. Every day is a fight against my body.