Working life | ‘Fibromyalgia is as much a part of me as my red hair and love of leopard print’

Tell us a little about yourself 

My name is Stacey and I live with fibromyalgia – a complex, chronic condition that has many symptoms, with the main ones being chronic pain, brain fog and fatigue.

There’s no known cause for fibromyalgia, so there’s no cure. Treatment is focused on making myself as comfortable as possible, keeping to a routine and reducing stress.

I work at the National Gallery, as part of the commercial services team. My day-to day-work involves answering calls and emails, and dealing with guest feedback. I can be asked about anything from opening hours and pigment preservation to painting recommendations and accessibility.

I have to be flexible in my thinking and need to keep a close eye on specifics, while thinking of the bigger picture, as the gallery approaches its 200th birthday.

What’s your favourite part of the job?

I never grew up around art – my family didn’t take me to many galleries or museums, and I lived in a poor area, so school trips to central London were out of the question. So, the guests who feel lost, don’t know where to begin or feel that art is not for them are my favourite people because I understand their confusion.

I want them to fall in love with the gallery in the way I did. I want them to understand that while these paintings were made for the wealthy, the people who created these extraordinary works were just like them – they laughed, they cried, they argued with their friends and painted works like Holbein’s The Ambassadors.

I also work with some incredible people. It never ceases to amaze me that I share a lift with the world’s experts on the old masters, who are genuinely interested in both my weekend and our guests’ experiences.

Everything we do is collaborative: administrators and heads of departments work side by side on projects because we know that our life experiences brought us here for a good reason, and each opinion is as valuable as another.

What kind of accommodations has your workplace made for you?

I used to travel by train which exhausted me and was stressful as neither of my local stations are accessible. Last year, I was accepted onto the government’s Access to Work scheme, which provides funding for reasonable adjustments. This allowed me to get a taxi to work from my home in Kent.

Access to Work also provided a special keyboard, ergonomic mouse, a fully adjustable chair and leg rest, as well as software developed by physiotherapists that shows me how to perform exercises to unstiffen my body.

Access to Work has its flaws; it can take a while to get the ball rolling and you can wonder what to ask for, but once you are on the programme, the team is great.

The gallery has a hot desk/clear desk policy, but I have been assigned a specific desk so that I don’t have to bring out all of my equipment in the morning and put it away again at the end of every day.

My day is also scheduled around my medication times, and my colleagues and I shift tasks around based on my symptoms. Sometimes I have difficultly speaking due to jaw pain, so I switch to emails.

What is the reality like for disabled people working in the museum sector?

I think employment in general has many issues with regard to not being accessible to disabled people – and it comes from employers being afraid to offend or upset us.

The reality is many (if not all) of us are just like other applicants: talented, hard-working, dedicated and incredibly accomplished, but we are trapped in a body that has more limitations than most people have experienced.

The museum sector can be rigid in its thinking and behaviours, and we need to be given a chance to show how dynamic and engaging we are. There are risks in employing anyone, so why not take that same chance on us?

If a candidate applies for a role, they’ve already made the assessment that they can perform to a standard that they think you expect. If there are barriers, let all candidates know.

Some people have disabilities but don’t meet the government standards, others don’t consider themselves disabled or aren’t ready to admit it. And people who aren’t disabled may have struggles with stairs or prefer larger application forms.

What can managers and colleagues do that makes a difference?

Be aware of your own biases. We are so used to thinking of mobility disabilities in binaries – people who use wheelchairs versus non-disabled bodies – disability is a spectrum.

When I go shopping, I use a scooter or power chair; when I come to work, I use a walker; but when I’m at home, I use a walking stick. But no matter what I use, I’m still disabled.

Check out the social model of disability and try to use it. When you view disability as part of the human experience, you support those on their journey to fully engage with life.

Statistically, we are more likely to experience a physical or mental health issue, illness or disability than we are to become parents. Every company has a policy in place for parents, but very few have the tools in place to support their employee should they go through this.

You have to start somewhere, so start now. Believe the person. If they tell you that something is hard, then trust that it is hard for them. Don’t tell them that you don’t see it that way or that others can do it.

Ask them what they need to be able to do it. Better still, look at tasks that can be shared among the team. There is one physical task in my team that I cannot perform, so I organise it – plus make the coffee for my colleagues when they complete it.

Disabilities are not nine to five. I am not salsa dancing at 5.01pm, nor are my taxis luxuries. I wake up at 5am in pain, do my physiotherapy, take drugs that would floor most people and drag myself to work.

I work in pain, smile and share my knowledge. I go home, in pain, and cuddle my cats and play video games. I lie down at 10pm and cannot sleep because of the pain but I wake up the next day and do it all again.

But I wouldn’t not do it, because I truly love my work.

Colleagues, remember, the person next to you is a person. My team knows who I am. I laugh too loudly, I know every inch of the building, love scary movies and have fibromyalgia. It’s as much a part of me as my red hair and love of leopard print.

They grab me a hot-water bottle when I need one and make me laugh all the time – and I wouldn’t want to do this without them.