Hidden disabilities and me

Hello, I’m Emma and have hidden disabilities including Ehlers-Danlos Syndrome, fibromyalgia and anxiety. Hidden disability often means people look well from the outside but are experiencing difficulties in day-to-day life.

As a child, I found that I could do some things that others couldn’t. Bend my body in unusual ways, do ballet and gymnastic manoeuvres without training and swim really fast!

Later in life I started suffering with immense pains and my joints would dislocate for no reason. My jaw would dislocate when brushing my teeth, my finger(s) would dislocate when pushing a trolley in the supermarket. I would get tendon tears (like sporting injuries) while I was asleep, and they would take weeks to heal. I found that I started to become almost too scared to move.

After multiple misdiagnosis, a rheumatologist conducted tests and diagnosed me with Ehlers-Danlos Syndrome and fibromyalgia. Anxiety followed due to not knowing how to manage my condition.

Working with hidden disabilities

One of the hardest things I had to deal with was work and how my diagnosis affected my career. I trained as a teacher, but I didn’t know how to manage my conditions properly and ended up losing my way. I found it hard to find a way to earn a living that I was physically able to do.

Over the years, I have learned how to manage my conditions and now feel that I am in a much better place both physically and mentally. I know how to look after my body to minimise stress on my joints and tissues. My son introduced me to Buddhism, and I have taken a lot from the teachings with Kelsang Pagpa.

I am now more accepting of myself and in January last year I started work at HM Land Registry’s Fylde Office as a Registration Officer.

Getting a job here has changed my life. The job gives me stability and, because HM Land Registry works in a hybrid way, I’ve been supported to work at home when I need to.

The support here is incredible and one of the first things I did was join the Disabled Employee Network. My line manager was also very supportive and told me about the Workplace Adjustments Passport.

Help at home and in the office

My adjustments include a supportive and adjustable chair, wrist supports, and taking regular breaks to prevent over wear on my joints and tissues. They may not seem much, but they make a big difference to me and my ability to work.

I feel I can be open here and ask for support and equipment that enables me to my job to the best of my ability. I feel like an equal.

I have an assistance dog in training called Pepper and when I go into the office she will be able to come with me.

Pepper helps with picking things up and fetching things, so I don’t wear my joints out or risk dislocating them. She also helps with my anxiety and I feel calm when she is next to me.

My condition is incurable and degenerative, which means it will unfortunately get worse as I get older, but I plan to live the best life I can!