Experiencing Ehlers-Danlos syndrome at work

I have Ehlers-Danlos syndrome (EDS). My body has a genetic defect which affects the way that it produces collagen; this affects my connective tissues and therefore most parts of my body. EDS is not a well-known condition and it is often missed in diagnosis. As a child I was just assumed to be a ‘weedy’ kid who was no good at sport and couldn’t run very well. The truth was, due to my weak tendons and ligaments, my body was working extra hard to keep my joints in place.

I frequently injured myself from sprains to a spectacular elbow snap in a failed attempt to join the schools gymnastics club at age 11! I was diagnosed in my 30s after becoming very unwell in pregnancy. Hormones during pregnancy cause connective tissues to loosen up even further. By the point I was diagnosed, I had difficulty walking as my hip or kneecap would start to dislocate as I tried to walk and life was incredibly painful as a result. Connective tissue isn’t just limited to joints however and I also had problems with my eyes when tissues became fragile in them as well.

My EDS diagnosis journey

By the time I was diagnosed, I had almost lost my son during pregnancy due to complications associated with EDS which put me in hospital. I had an emergency referral to a Rheumatologist after previously seeing one several times about long term joint pain without a diagnosis beyond a vitamin D deficiency. At the time, I was in my mid-thirties and had worked for EDF for several years. I deteriorated a lot during pregnancy and there came a point when the company very kindly suggested that it would be a good idea to work part time and wind down to maternity leave early. I had a lot of support from the company at this time.

After pregnancy, I went through a lot of physiotherapy and hard work to get to a point where I could walk, at first with aids and after a couple of years, finally without an aid. By that time, I had some major surgery due to my condition and discovered that, due to the wear and tear of joints, I have Osteoarthritis in my lower spine and my neck, along with degenerative disk disease. I am currently trying to delay fusion surgery in my spine for as long as possible.

EDF has been very supportive throughout my journey

I have had support through occupational health and the ability to use the benefits scheme has meant that I can access Osteopathic treatment as well - this has been invaluable in my rehab. My desk has been set up to support my needs – I develop tendonitis easily and modified display screen equipment reduces that risk immensely. Flexibility with my job, allowing me to work remotely on a regular basis means I am able to conserve energy and heal -this is very important when your hips, knee and ankle tendons are all inflamed and damaged. Even the ability to access gym memberships through the flex benefits package meant that from the early days of rehab I could access a pool close to work which helped to build strength day by day.

We were also able to make sensible adjustments to my approach to work. Whilst my natural environment was site based work, I was able to focus on our project office activities during the long rehab and still give value to the company. This took into account my physical ability as well as accepting my intellectual contribution. My experience has been one of a long term health condition which was undiagnosed and deteriorated to a significant degree before diagnosis. I have been incredibly lucky to have support from my employer which has enabled me to get some considerable success with rehabilitation. I have worked in different industries during my career and I am very aware that not all employers are as progressive as EDF.

The support that I have experienced has been incredibly positive and has given me the resources I needed to regain my independence. Being able to work has had an incredibly positive affect on me, it has given me a feeling of worth when coping with the emotional impact of coping with illness and it has helped me to remain intellectually engaged. That engagement is incredibly important and extends to all of us who encounter disability and those of us who have diagnoses which are not as positive as mine.