Preparing for work with a rare condition by Jack McLellan

Jack McLellan is 24, has an undiagnosed form of Muscular Dystrophy and uses an electric wheelchair. He is a HR Assistant at Muscular Dystrophy UK.

I’m a HR Assistant, which means I help deal with matters regarding members of staff at the charity. This can range from processing holiday requests, processing sickness absence, arranging training for staff and helping to recruit new members of staff. I really enjoy my job because I feel like I’m helping the whole charity make a positive difference. Plus, it helps that the charity is a positive, friendly and supportive place to work.

Here are my tips for preparing for work with a rare condition:

Know yourself and your condition

Think about what has worked well for you during university. This could be anything including a raised desk, computer aids, and a PA. Also, think about for how long you would be able to work. I always knew that I would find it too tiring to work full time, especially after factoring in the daily commute.

Don’t worry if you don’t know the answer to these questions, there are other ways to find out…

Get experience

Internships and work experience programs can be invaluable to preparing for work.

To begin with, it gives you something to put on your CV. The job market is extremely competitive, so in order to get into work, you will need experience. It’s a way of finding out what the world of work is actually like, as well as what you’re good at and it helps narrow down what you’d like to do as a career. It will also allow you to assess how you will be able to manage work with your condition.

One of the most important things I ever did was apply for Muscular Dystrophy UK’s Moving Up programme. I’d been struggling to find employment for years. Not only did the placement give me plenty of varied experience to put on my CV, but I also got to experience an area of work that I had never really considered but ended up enjoying. Through the placement, I got my first permanent position.

As someone with a disability work experience was particularly important, as it gave me an opportunity to discover what effect regular work would have on my energy levels, what it was like working in an office and how I could deal with a daily commute to and from central London. During this time, I discovered what I need from a potential employer as well, ranging from my working hours to the set-up of my work area.

Remember that you’re a capable person

It took me quite a while to find paid work. At times my self-esteem was extremely low. I sincerely hope that you manage to find suitable work quickly and easily, there’s a chance that the path to work is not quick or simple. During this time, remember that you are a capable and intelligent person that would be an asset to the workplace. To begin with, you’ve managed to get through university, an achievement for anyone. In addition, you’ve done this while living with a disability and the added complications that this can bring.

Don’t be afraid to say what you need

Sometimes it can be difficult to ask for adjustments in the workplace. However, if you get a job offer it’s because the employer thinks that you are the best person for the job, and as a result will want to get the best from you. To achieve this, you need to let them know what you need.

For example, I need a raised desk in order to work; if I didn’t have this I would struggle to reach my computer and would cause excruciating back pain and I would have to take time off of work. In addition, I don’t travel during peak rush hour and work a day from home every week. All of this allows me to carry out my job to the best of my ability.

Take opportunities

I know that as someone with a disability I can often worry about what might happen, and as a result, can say no to a lot of things. However, the main reason that I managed to find employment is that when I was taking part in MDUK’s Moving Up project, I would basically say yes to anything that was asked of me. This meant that not only did I get to experience a wide range of different parts of the job, but was also thought of as someone who was hard working and willing to help my co-workers.

If you’ve got a rare condition the main advice I can give is to get work experience, try new things and make sure that the right support mechanisms are in place. Good luck!