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Disability Interview – Emma

In this second interview for Disability History Month, we spoke with Elizabeth, who lives with what is often referred to as a ‘hidden disability.’ She explains what it’s like living with her condition and her prospects for the future.

“I was diagnosed with Multiple Sclerosis (MS) in 2020 at the age of 26, a few weeks after the first lockdown. Up until this point, I was experiencing a whole host of strange symptoms, which seemed to get worse as the weeks went on. I had gone completely numb from the neck down, I had next to no upper body strength, and using my hands was becoming more and more difficult – which isn’t great when you use a computer for a living! But I carried on working and going about my daily life as best as possible, thinking I just had a trapped nerve (which I can laugh about now!) and never would have thought it could be something more sinister. I now know what I was experiencing was a relapse. 

It was only after I was encouraged to speak to the GP that I went to seek medical attention. At the time, the NHS was battling COVID, and I felt guilty speaking to them about something I didn’t think was a big deal.

The GP booked me in to have an MRI scan at the hospital. A few days after the scan, I received a call to tell me I had Relapsing-Remitting Multiple Sclerosis. Until then, I considered myself a healthy person, so this news was a real shock. I had to come to terms with the fact that I would have an incurable, progressive disease for the rest of my life. Plus, in the middle of a global pandemic, I suddenly received the status of ‘vulnerable,’ which I struggled with.

Living with MS

The period following my diagnosis was challenging, and I can only describe it as going through a grieving process. I felt I was grieving the person I was before and the life I thought I was going to have. After several months of referrals, tests, and treatments, I got into the flow of managing life with the disease, which can sometimes feel like a full-time job! But as the disease is very unpredictable, I still struggle with acceptance.

But it’s not all sad! The diagnosis completely changed my outlook on life. I began to value my health more, and I sometimes joke that I am the healthiest I have ever been post-diagnosis. It also made me evaluate what is important in my life, and now I focus my energy on those things, especially as I don’t know what the future will hold.

This diagnosis also introduced me to the disabled community, and oh, how amazing it is! I joined a local MS Society Group, which I volunteered with for a while, and I met lots of people in my community living with MS, all at different ages and stages of the disease. They helped me to realise that even after diagnosis and disease progression, you can still have a brilliant life, and I am very grateful for that.

I also joined online communities such as MS Together, a fantastic charity providing advice and support to people living with MS aged 18-35. I now know people all around the world who are a similar age to me and experiencing the same things. I have often turned to this online community when I have had questions and needed support. I regularly respond to help other young people who are being diagnosed with MS each week across the UK, so some of my knowledge and experiences can help them, too.

To disclose or not

In terms of work, you don’t have to disclose a health issue to your employer. I know across the MS community that many people do not disclose their health condition at work out of the legitimate fear of being discriminated against. When I started at SIG, I was asked to complete a health assessment, so I disclosed my condition from the outset. I went through an Occupational Health Assessment, and reasonable adjustments were put in place to help me to do my job. My manager has been supportive and understanding of my condition since my first day with SIG. She is also always the first person to remind me that my health comes first! When your health can prevent you from doing things, it’s easy to feel like you’re letting people down, but I’ve never been made to feel like this since I started.

It is estimated that 70-80% of disabilities are invisible. So, like many others, as my disability is, for the most part, invisible, disclosure is something I decide whether or not to do. There is certainly the fear that once you have disclosed a disability or a health condition, people will see and treat you differently. I am not secretive about my illness, and I will discuss it if the opportunity arises. I do tend to avoid mentioning it purely because it is a difficult conversation to keep having time and time again, especially for a misunderstood and complicated disease such as MS, which affects each person very differently. Unfortunately, I have had negative experiences in the past when I disclosed my condition, and it was met with comments like ‘But you don’t look ill,’ which has made me feel that I need to in some way prove my condition. So, deciding whether or not to disclose is an ongoing challenge.

Prognosis

Nowadays, most people with MS get diagnosed in their twenties and thirties. In fact, MS is one of the most common causes of disability in younger people. Due to ongoing research into the disease and yearly medical advancements, people are diagnosed much earlier, and treatment options have greatly improved. This means that the outlook for newly diagnosed people is very promising. I have been on immunosuppressant treatment for over 3 years to keep my disease at bay, and the drug I currently take was only developed in the last 5 years! I also take part in medical studies for MS, which will hopefully further improve the chances of those diagnosed in the future. 

SIG support and how colleagues can help

I have personally felt very supported with my disability since working for SIG. It is a relief to work somewhere that not only acknowledges and accepts my health condition but also doesn’t treat me differently because of it.

I think there is still more to be done to enable disabled people to work for the charity. This is not just adaptations to physical environments, which are needed, but also building the knowledge of disability throughout the charity through training and open discussions. UK Disability History Month is a great opportunity to do this, and I am grateful to hear the stories of others working for SIG.

There are millions of disabled people in the UK in employment, and they make significant contributions to our economy and society, bringing many skills and talents to the workforce. As the years go by, with improvements in technology and understanding of disability, more and more disabled people can work. This is only made possible through putting adjustments in place and creating an accessible work environment. There are some amazing people in the disabled community, so the more employers foster a work environment where disabled individuals feel welcome, valued, and supported, the more they will want to work for them.”

Thank you, Elizabeth, for your honesty, insightfulness, and vulnerability. We hope it helps a little to know how well you’re thought of, and we wish you the very best of health going forward.

Multiple Sclerosis is a condition that affects the central nervous system. It can be a challenging condition to live with, but new treatments over the past 20 years have considerably improved the quality of life of people with the condition.

An estimated 2,500,000 people in the world have multiple sclerosis. The UK has around 130,000 people living with the condition.