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Disability and Quality of Life survey

A story of invisible disability - Lorna's experience

Time 300 days ago Comments 0 comments

Throughout September 2019, Sodexo is hosting a Disability and Quality of Life survey in partnership with PurpleSpace - an organisation of disability inclusion experts. The results will help us to make recommendations about the needs of people with disabilities, that will, in turn, positively impact thousands of lives.

 In the first of a series of interviews with members of the PurpleSpace network, we chat to Lorna.

Lorna works in the IT department of a British multinational retailer. Lorna was diagnosed with myalgic encephalomyelitis (ME) at the age of 16. Eleven years later, she was diagnosed with fibromyalgia (a condition that causes pain all over the body), and seasonal affective disorder. She explains her experience of living and working with these conditions.

"When I first got ill, I was studying for my GCSEs. I was quite unwell in the early days and was pretty much unable to get out of bed, so I only went into school to sit my exams. A couple of years later I received a donated mobility scooter from the British Legion, which meant that I could get some independence back. I did my A-Levels with an ‘online school’, then went on to study IT at my local university, and came out with a First.

"After university I applied for multiple graduate schemes. Many of them had a tick-box where I could disclose my disability. There were mixed reactions - a person from one company that had a lot of steps leading into their building made a comment like: ‘If you can’t manage the steps, you can’t work here’. I asked others about the possibilities for flexible working, but it was very much a ‘no’. Some companies were supportive and asked what they could do to help. 

"I have been at my current workplace for seven years, and I started here on the graduate scheme. It’s not been without its challenges and it took me some to find out how to get all the equipment I needed. A couple of years down the line I asked if I could work from home once-a-week. This has had a massive positive impact; one of the main impacts of the ME is a lack of energy so it means I can pace myself and even work from my bed. 

"I felt quite lonely in my first few years at work. Then HR put me in contact with a colleague who had multiple sclerosis and together we set up a disability network. After four years we’ve got almost 400 members and we use a Yammer group to share our experiences. I now know there are lots of people going through similar challenges to me.

"I use a crutch to walk short distances and have to commute into work on the train. I’ve found that I have to ask for a seat rather than wait for someone to offer to give up one. Initially I wasn’t so good at asking for a seat on the train, but I’ve become more confident. I have had experiences where fellow commuters are reluctant to give up their seat and have made negative comments. Most days this doesn’t affect me and I can just shrug it off, but on bad days when I’m feeling extra tired it can be an upsetting reminder that I have a disability.

"I’ve moved jobs within the workplace and I’ve had multiple line managers. As it’s not a visible disability, people struggle to understand it. They ask questions like: ‘How could you really be that tired?’. To make these conversations easier I created my own ‘pack’ which is a guide that talks through my journey, conditions, symptoms and coping techniques. It outlines how I want to be treated at work. Some managers have treated me like a China doll; others haven’t give me any support, so it’s about getting that balance right."

As Sodexo is a disability confident employer, we are passionate about ensuring we offer a workplace that is truly inclusive. Recruiting, engaging and developing employees with a disability is a key and vital component of that. 

Take part in our workplace survey today, which is open until Wednesday 2 October 2019. The results will help us to make recommendations about the needs of people with disabilities, and this in turn will positively impact thousands of lives. 

If you have any questions relating to the survey, please email:


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