Helpline 07939 046 030

Alex’s story - Support in the Workplace

30 April 2021

My name is Alex, and I am a Visitor Experience manager at the Design Museum in London. I have been working at the museum for two years and during that time I have had to have two big operations relating to Neurofibromatosis. One of those was to have my bladder removed, and the most recent was when I had a malignant neurofibroma that had to be removed as well. 

This has impacted me in work and so I felt it was time that I explained to my colleagues about the condition and how it affects me.

In a morning briefing I did a presentation about Neurofibromatosis Type 1 to help my colleagues understand just exactly what is NF1?

In my job, I am often the first person in the building, setting up for the day, turning on the exhibitions, and getting everything set. From there, anything is possible, from objects breaking down, children being lost, guests being angry or upset about something but it’s all in the day-to-day part of working in visitor experience. I also do daily briefings when I have to speak in front of the team and let them know the important information for the day ahead. 

Another part of my role is based in the office, where I have to do the planner for the day ahead, ensuring the team working can move from different positions and get to their lunch on time. I also do payroll and other administrative tasks. As people with NF1 may know, this can prove challenging. When working on the team’s planner, it can often be a bit of a blur and I have to ensure I take my time with it and do my own method. It’s the same with payroll, it’s important to get this right otherwise the team would not be very happy if they were not paid correctly!

With NF and work I think it can often be complicated. I mentioned before about doing the planner, this is something I really struggle with. Having lots of different people in, having to rotate positions and make sure they do it all on time. As well as this, I am often quite slow at moving around, due to NF pain. These two things to anyone who didn’t know may seem unrelated, but I know it can be brought back to the condition. I think it’s important to be upfront and open about this.

As part of my presentation, I explained how Neurofibromatosis can affect everyone differently and is still relatively unknown.

One of the consequences of this is that support in the workplace and in the day to day lives for people with NF and their families is often patchy and/or inadequate. However, there is no reason not to succeed. In my job, I give myself a lot more time, I often have to print documents off, or enlarge them so I can see it a bit clearer. It is a condition that can be physically and mentally demanding but explaining how the two connect can only make people understand it more and give the staff a better knowledge on why I might make a mistake or two.

Despite having to take time off and often having to manage the worry about the next scan or when I might have to go for an operation, I am lucky to have a supportive work environment.

"I think the best thing to do is to be upfront with your work. Connecting the dots about how it affects you as an individual and ways to work around it. I do not think there are many cases when it needs to stop anyone achieving or doing what they want."

I am passionate about working in the tourism industry, in my chosen field and so glad I get to do so at the moment.

Being in a supportive environment more than helps.

iNForm Your Work

If you yourself are in doubt, get in touch with Nerve Tumours UK and ask for support through their “iNForm Your Work” programme. iNForm Your Work is a programme of information and on-the ground support from Nerve Tumours UK. It aims to make sure every employer has the tools to provide the most effective support for their employees who are diagnosed with Neurofibromatosis and who may be experiencing difficulties.

iNForm Your Workplace

Share with your employers or colleagues and help them understand Neurofibromatosis and your needs

Download the resources from the NTUK website here