#IDPWD - My experience with muscular dystrophy

I’ve worked at the NHS Business Services Authority (NHSBSA) for over 38 years. About 30 years ago, my brother was involved in a bad car crash and was diagnosed with muscular dystrophy.

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At first, I was told I wouldn’t manifest symptoms; but following a re-diagnosis and with the onset of muscle weakening, I was informed that I too had developed the condition. This was about 10 years ago.

Being diagnosed with an incurable, progressive illness is devastating. The condition has forever changed how I perform simple daily activities, such as brushing my hair.

I tried to hide my disability from people at first, but as it progressed I had to confront the reality of muscular dystrophy and make my colleagues aware of my problems. This was not an easy thing to do!

One of my colleagues from the NHSBSA’s Estates team noticed I was struggling and offered a parking space very close to the building – this was a blessing! Our office in Fleetwood experiences some horrendous winds and I had nearly been blown off my feet a few times.

My condition has deteriorated over time and I have become increasingly disabled. The Senior Management Team and Estates have been wonderful in how they have supported me and I am always encouraged to discuss my difficulties so a remedy can be explored and provided.

What has the NHSBSA done to help me?

I was advised to arrange a visit from the occupational health team who could suggest necessary adjustments to my workspace.

The entrance to the back of our office was levelled and an electric entry system for the door was installed. I have my own remote control for the door which makes it much easier for me to get in and out of the building.

The NHSBSA Estates team also helped raised my desk and provided a bespoke chair with heat pads to help ease muscular aches and pains. I sometimes have difficulty getting around the building, especially when I try to carry hot drinks, so I have also been provided with my own trolley.

Not all disabilities are visible and During International Day of Persons with Disabilities, I would ask you to consider this: A disability may appear invisible purely because the person is hiding it very well. They may not feel able to share their plight because they’re frightened, embarrassed, sad, or a whole host of other emotions.  A small gesture of empathy and patience can be very encouraging and make everything feel worthwhile again.

It’s also important to ask for help if we need it for any reason. I have received support with my physical disabilities, but have also had my difficulties listened to empathetically which has made me feel valued.

We have a very understanding employer in the NHSBSA and you should always come forward if having any difficulties.  In my experience, colleagues will receive a sympathetic and proactive resolution to the difficulties they have pointed out.

I hope this blog helps promotes the rights and wellbeing of persons with disabilities, and helps encourage them to approach their employer for support.