Finding the right type of job

By: Marcia

Straight out of school I went to work as a computer engineer, installing and fitting hardware. It was a very physical job involving lots of lifting, drilling and stooping to put cables in. It was a male-dominated world and I was one of the first women in the field. I continued in the job for eight years. However I knew something was wrong with me from the age of 15. I would do something as simple as leaning forward and my shoulder would dislocate. It was really painful but I would pop the shoulder back in and continue working with a tingling arm.

The physicality of the job took its toll and I eventually got diagnosed after seeing the physio when I was 25.  It wasn’t until my daughter was diagnosed with EDS at age two that I really boned up on EDS and its effects. I realise that I also had PoTS and Raynaud’s disease.

What is PoTS?

Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity.

Find our more from PoTS UK

After having my daughter my joint problems got even worse and I just couldn’t continue with the physical work. I moved into the admin side of computing and ran the helpdesk. This was too static though which wasn’t good for EDS either.  Eventually I did a Cisco networking course and moved into teaching, which I found really draining. However as part of a training course, I had done a project. I realised that I was good a project management. I also naturally find business exciting. So I set up an IT-based project management company.

The work suits me much better physically. I work roughly 10-25 hours a week. I can rest between projects and I also have a partner who handles the media side. When I’m having a bad day, she picks up the slack. If I didn’t have EDS I would work more intensely and spontaneously, but I need to pace myself and work steadily. I’ve also started delivering health awareness talks on EDS and Lupus and this is something I want to focus on much more.