Guest Post: Working with Multiple Sclerosis During Covid-19

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People are usually diagnosed with Multiple Sclerosis (MS) between 20 to 40 years of age, the prime working years of an adult. However, fewer than 50% of people with MS remain at work after 10 years of diagnosis, decreasing to 20-40% after 15 years.

Apart from the number of people that become unemployed after a diagnosis of MS, there is also a large proportion of people that need to reduce their working hours because of MS.

We know that the physical, cognitive, and psychological impact of MS can cause difficulties at work. However, there are other factors (e.g. how supportive your employer is) that also play a role in the high unemployment rates.

These facts show us how people with MS leave the workplace prematurely, and we are currently developing studies to understand what works to support people with MS at work.

Covid-19 has had a significant impact on our lives and livelihoods. The national lockdowns and social-distancing rules have forced us to change the way we work and how we interact with other people. The impact of the Covid-19 pandemic might change the way we work in the future and we would like to know how this pandemic has affected people with MS at work.

At the University of Nottingham, in collaboration with Queen Mary University of London, University of Leeds, and Cardiff University, we are conducting  a study to understand how Covid-19 has impacted the employment of people with MS. 

What does taking part in the study involve?

We are looking for volunteers to complete a few questions (a survey) about the implications of the Covid-19 lockdown on the employment of people with MS.

Our study involves an online survey that takes between 20-25 minutes to complete and that explores your experiences of working during this year. The survey includes questions about the support that you received at work (if any) during the national lockdown, and what further support you might have liked to  receive. 

Your answers to the survey questions are anonymous. However, if you want to tell us  in more detail about  your work experiences  this year,  you can provide us with your email address at the end of the survey and we will follow this up with a telephone or Microsoft Teams interview (according to your preference) to understand better your experiences. The interview will last approximately 1 hour.

If you are interested in completing the online survey, you can find the link in the advertisement below.

Biography

My name is Blanca De Dios Perez, and I am a PhD Researcher from the University of Nottingham working on a project about preventing job loss for people with Multiple Sclerosis (MS).

My interest in MS started during my bachelor’s degree in Psychology at Complutense University of Madrid. During my degree I focused on understanding the impact of MS on cognition. Then I pursued an MPhil in Psychology at The University of Manchester understanding language problems in MS.

I am keen on understanding better what could be done to improve the care and support available for people with MS, with an interest on improving their professional lives and helping them to remain at work for as long as they wish.

CoI: nothing to declare

About the author

BartsMSBlog

4 comments

  • I worked as a key worker full-time throughout the first and second lockdowns. I haven’t informed my supervisor or team manager of my MS due to ableism.

    I’ve experienced with a previous manager that they made too many incorrect assumptions and questioned my ability to work. Even though my MS is invisible. So I just keep my MS to myself now and will tell my manager only on an as and when needed basis.

  • One question I have is does the state benefit system support pwMS well enough? In the context of added financial support, alongside working part time.

    I have MS and was made to go to job club at a private company, when claiming ESA. It was quite a humiliating experience and the job club coaches were not disability trained, they admitted that to me.

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