I struggle to find a job that will accept me

Posted June 17, 2020

Stephen's story with Ehlers-Danlos syndrome

It would take me hours to tell my story fully. But here is a start. 

One day just before Christmas I got up off of my bed and felt excruciating pain in my knee, I went to the emergency room and because I could still move my knee they sent me home. A few months later, I went to the GP as the swelling hadn’t gone away and that’s when we found out that I had actually torn the cartilage after having an MRI scan. By this point, I had been signed off sick from work as I could not perform my duties.

After a while waiting I had surgery on my knee, where it turned out that my cartilage was not just torn, but shredded and not fixable; they removed it. The doctor said that eventually, I would need to have a replacement, but due to the bones in my leg I would also need to have my leg straightened, and it was best if we left it for now.

At this point even doing the exercises the doctor given me didn’t feel right, my job sent me to occupational health which is where I found out via them examining me about the possibility of Ehlers-Danlos syndrome (EDS).

I went to my doctor, he was unsure at first, stating that ‘it’s too rare’. After we went through the Beighton scale and I showed him the odd thing that I could do to my hip (later found out this was a dislocation/subluxation) he sent me to the rheumatologist. I got the diagnosis, which shocked my doctor, and this meant that I couldn’t do my current job role. After fighting for a while they dismissed me on health grounds due to the time I had had off sick. Through all this, I was having counseling and taking anti-anxiety medication just to make sure I was mentally ok, and to see if it would help figure out the pain I had. 

A few months on, I have done more research and realize my problems had gone back to childhood when I was young I had pain when walking. I would get pain after writing and would fall over a lot (so much so they thought I was dyspraxic but I could pass the tests). About a year after my diagnosis I start specialist physiotherapy to help strengthen the muscles in my legs and arms.

At this point, my fiance fell pregnant which was a joy, but nerve-racking as well. During my time at physio, they realized that I needed more and needed to get my pain under control. I was sent to occupational therapy and to the community pain clinic, and these are helping me take control of my pain.

And this brings me to today, I have a beautiful little girl and a fiance that supports me. I am still without a job and struggle to find one that will accept me. I have found friends with this condition through community support groups and this is one of the best things: making me feel like I am not going through this alone.

Tags: , , , , , ,

Categorized in: