Introduction

Greetings! I am a new member and this is my first entry. I found this site while searching for something more to help me deal with my life, and in the hope that sharing my experience may help someone else.

Since childhood, I was always dislocating, spraining and breaking things. Everyone thought I was really clumsy. Ten years ago, I shattered my femur in a slip-and-fall at work. I have had five operations on my leg and it took two years to be able to walk again. The doctors were mystified at the severity of my injury. Then, in 2014 I started having terrible unexplained bruises all over my body. I was eventually diagnosed with Ehlers-Danlos Syndrome, hypermobility type. It is a genetic disease that, in my case, prevents my body from producing collagen. My bone density stopped developing in my teens, which explains my numerous injuries. My connective tisse (everywhere in the body) is distintegrating in front of me. I am in so much pain, yet can't take any pain medication because of my blood disorder. I have made great progress in coming to terms with the pain, but the loss of ability is more difficult. I was told I would recover in nine to eighteen months, but the truth is my condition is degenerative and lifelong. It is hard to have hopes and plans for the future when you don't now what you will be able to do six months from now. 

I was diagnosed at age 13 with Major Depressive Disorder. After my accident, I developed a severe anxiety dsorder. I take medication for both, and I have a great therapist. I have always been described as "moody" and "intense" and it has never been easy for me to make and keep friends. I was constantly bullied as a child. The mental health challenges are connected to my sydrome, but it isn't totally clear how. I am very isolated now, with only a few long distance friendships and most of my social activity revolves around my extended family. My friends just kind of gradually faded away when I could no longer do the activities they enjoy. I also felt like I had to pretend to be happy all the time so they wouldn't get bummed out while enjoying their twenties. Not one of my old friends could be truly present with me through this trial. Maybe I did something wrong, but honestly I am pretty bitter about this. I think I was a very reliabe friend and deserved to be treated better. My therapist says my low self esteem makes me gravitate towards the type of people who are unable to reciprocate. I tend to agree.

I also struggle a lot with feelings about my parents that fluctuate between guilt and resentment. My mother in particular is very negative and complains constantly about how hard my condition has made her life. My parents are obviously bitter because helping me has changed their retirement plans and they constantly complain about money. THis subject deserves its own post. My mother told me today that I'm speding my inheritance now, and my brother will get their estate when they die, just so everything is fair. This came out of nowhere in a casual phone conversation. I wanted to scream "What is fair about this? Who would choose this life?" Then I feel like an unappreciative brat. I think the dynamic with my mother is one of the hardest parts of my life and she is certainly my biggest trigger, but I also love her so much. It's pretty confusing. 

Thank you for reading this, if you made it this far. Some days all I want to do is cry and I feel so alone and hopeless. It helps to know that I'm not just screaming into the void.