Ehlers-Danlos Syndrome Support Group

I'm 25 and I've been diagnosed with Vascular EDS. Coming from a low-income family and being forced to work full-time right after high school, I've found it incredibly difficult to maintain the level of work stamina that most young people my age have.

I worked for a web hosting company for a couple of years as an office assistant, which was an incredibly physical job. On top of cleaning three different buildings constantly, I was in charge of office logistics. They were a fast-growing company and expected me to move and set up people as they were employed. Things began to get out of hand as suddenly half the people in the company decided they needed (or rather wanted) to move to a different location. I went strong for a while, moving everyone completely by myself. However, the work eventually caught up with me and, after sustaining a brief a injury in my leg, I developed a massive hematoma in my right leg. This forced me to be out of the office for a full month. When I returned, I found my energy dwindling and the tasks I used to do with relative ease were now beyond my capabilities.

I was fortunate enough to have health insurance with this job, but the job ended up making me need to use my health insurance more often than was normal. A month after returning to work, I was given a new supervisor (as my old one quit) and she was very unforgiving for my lack of energy and my inability to stay on top of everything the way I used to. I tried to explain my situation, but she wouldn't listen to anything that didn't come directly from a doctor. Of course, the doctors I had hadn't even heard of Ehlers-Danlos, so they began running several tests on me. Well, before I could even get any of the test results back, my boss fired me stating that I "just wasn't the right fit for the job."

Well, this of course meant that my health insurance was no more and I had to go immediately back on the search for a new job. I'm lucky to now have a much more low-maintenance job and a more understanding boss (although no insurance... boo), but the experience I had from this one job has left me in a constant state of panic. I feel the need to constantly defend my actions and inability to do certain tasks and that often alienates me from my co-workers.

Now here's the crux of the dilemma, I've been working the job I have now as a temp and my boss just yesterday offered me a storage manager position. This would be great for me financially and I'd finally get some health benefits, but the job itself requires a lot of physical labor. And now I just don't know what to do. I need the job, but I'm so afraid I'm going to injure myself again or worse. So, I feel like I have to pick between health and money....

I'm sorry to write such a long post... But I'm just wondering if anyone has any advice or any similar stories they'd like to share. I'm curious if EDS has affected other peoples' employment as much as it has mine.
Posted on 01/12/12, 02:57 pm