I work for a transport company as a manager. I had been with the firm for years when I started developing symptoms of myasthenia.

At first, it was just in my eyes, and I ignored it, but then it started affecting the muscles in my mouth, neck, arms and legs as well.

After having various tests, I was diagnosed with myasthenia gravis by my neurologist.

I didn’t want to tell my employer because I have always been someone who has just “coped” with things, and I didn’t want to make a fuss, or for anyone to think less of me. However, I was starting to struggle to speak in long meetings and I was slurring my words. I also started to get bad brain fog and problems concentrating, as well as problems using screens for long periods. However, I knew that if I went to have a rest, it would “reset me”, as this was something I had learnt about my condition.

Telling my boss

I knew I needed to tell my boss at work and when I plucked up the courage, he was really supportive. As myasthenia gravis is a disability, he told me that I was entitled to “reasonable adjustments” at work and he asked me what I thought I needed. I told him that it would help me to start work later to give my medication a chance to kick in, I also explained it would help to have the opportunity to go into a quiet room upstairs for a rest when I needed to. He agreed to both of those adjustments, as they were deemed reasonable.

Things are much easier at work now and my colleagues have been so supportive. They don’t think any less of me at all and just want to help me. Sometimes in meetings, they’re the first ones to notice that I’m starting to slur my speech or my eyelid is starting to droop, and they tell me to go take a break! They also know to keep an eye on me when I’m eating in case I struggle to get my food down.

Adjustments

Having those adjustments and that support has helped me continue in my job which is so important to me, from an income point of view and because doing my job is good for my self-esteem. I do appreciate that not everyone with myasthenia is able to work, even with adjustments, but I’m glad that I still can and I am glad I was able to articulate what I needed.

I’m now applying for PIP and have had advice from the myaware Welfare Officer, Charlie about how to self-advocate at the disability assessment too, so that is my next step with self-advocacy!  

Anonymous