At work with MS

At work with MS

MS affects everybody differently, but you may find that MS symptoms, relapses, disease progression, or in recent times, the Covid-19 pandemic, impact on your working life. Our work is a big part of our identity, it’s more than just a regular pay packet, it can give us a sense of purpose, so it’s understandable to feel anxious about having to give up such a big part of your life. With the right support in place, MS shouldn’t stop you from working as long as you want to, but you may need to make some practical and emotional adjustments along the way.

Here, we share the experiences of Mike and Letisha about how they deal with MS in the workplace, and answer some frequently asked questions about working with MS, from telling your employer to coping with fatigue.

At the time of my diagnosis, I had to give up work for a few months. I had two relapses back to back and they both made it difficult for me to leave the house. I stopped working in May 2019, the same month I was diagnosed and waited until I had recovered from my relapse before seeking new employment. Having to stop work and being diagnosed at the same time was tough, but I wanted to focus on getting better without the worry of work. I found the job search process more draining and tiring than I ever had in the past, it felt like a full-time job! I had over 20 interviews – all different types; ones with tests, competency-based interviews, informal and formal interviews. Not once did I reveal that I had MS. 

At the time, I had only been diagnosed for 1-2 months, so my MS was very fresh and I was still coming to terms with it. I also find that as a black, young adult, it is quite hard for me to get a job in a corporate environment and I felt disclosing that I had a disability would only hold me back further. During the job search process, I found my anxiety was increased. I wasn’t sure if I should look for full-time, part-time or temporary positions. I was also worried about starting a new job and then being too fatigued to show up for work the next day, or experience a relapse and have to take time off and potentially lose the job. 

After three months of unemployment and about two months of job searching and interviewing, I was offered a role as a full-time Personal Assistant in Central London, which fitted with everything I needed at the time. I didn’t divulge that I had MS until I started my job. I didn’t tell everyone, I only told people who I felt needed to know; my manager and a few other colleagues who I work closely with. If I’m honest I felt nervous, awkward and quite anxious when disclosing my MS as I didn’t even know how I would feel talking about it and what to expect from others, as it was new to me. 

The main reason I decided to inform my employer is because MS is so unpredictable and you can’t get the help and support you need if they don’t know. It was well received and accepted. A few of my new colleagues know people who have MS or similar neurological conditions, so they are aware of some of the symptoms and challenges I experience. I have been back in full-time employment for 10 months and overall, I manage well. I do have set backs and find it challenging at times. Fatigue and cognitive issues are a real problem for me. I find it hard to concentrate at certain times of the day but I’ve found solutions to help me manage these issues better. I start and finish work earlier to avoid full-on rush hour, I have a healthy, filling breakfast and a later lunch so I don’t start shutting down too early. Another thing that really helps is the ability to work from home (currently I am working from home full time due to Covid-19). Prior to Covid-19 I worked from home 1-2 days per week, which really helped with my fatigue. Working with MS is a new challenge, one that I’m still adapting to.

One of the major challenges I faced when I was first diagnosed with MS in June 2019 was the uncertainty around how long I would be able to continue working. It’s a question that nobody can answer; nobody knows what path the condition will take and we have all heard the line “everybody’s MS is different”. For me it was something that was a big worry. I am a police detective and at the time of diagnosis I was working shifts and often long hours with little periods of rest in between. The job can be highly pressurised and the stakes are high as, ultimately, my actions and decisions affect people’s lives. I also needed to have a good level of fitness as sometimes my job can be physical. In the police, you are expected to undertake and pass an annual fitness test. 

The questions that instantly came to the fore when I was diagnosed were: What if I can’t work, how will I pay the bills? Who will pay the mortgage? How will I buy cake? (Contrary to popular belief, most police officers prefer cake to donuts!). One of the difficulties that I encountered was how would I deal with the long hours of being a detective? Like most people with MS, one of my main symptoms is fatigue, it’s something that hits you out of the blue and until you have experienced it you cannot describe it. Luckily, working for a big organisation they were able to accommodate me and give me a role that did not require me to work shifts and long hours. I was grateful for this and it has helped me get into a routine which assists with my fatigue. 

It’s still work in progress and awareness of working with a disability in the police still needs to be addressed more, but there are people working hard to achieve this and that can only be a good thing. To help, I have just signed up to the Disability Support Group within the organisation and I am hoping not only to get support, but to be able to give support to others facing similar challenges too. 

Moving on to the present when Covid-19 is a major part of everybody’s lives, I have been working from home for the past six months. At first it was difficult and a challenge; I no longer felt part of a team, a team which supported me with my issues and helped a lot, even if it was just teasing me to make me feel at ease! However, with the technology available these days, I have probably spoken to my colleagues more since I have worked from home than when I was sat in the same office as them! And I get more time to rest and can easily put on my weighted blanket sat at my desk to ease my restless legs without feeling self-conscious. I have learnt to embrace the positives that come with home working! 

The advice that I would pass on to anyone, whether newly diagnosed or a veteran MSer: Ask for help from your employer, no matter how big or small the organisation, there is always something they can do for you, whether it’s making adjustments through Access to Work, offering you a role which can accommodate any adjustments or changes to your working hours to enable you to get into a routine. There is always something that can be done to ensure that you can fulfill your role and continue to work to help maintain your independence… and more importantly buy cake!

Here we take a look at some of the most common questions around working with MS, from dealing with fatigue to telling your employer.

How do I manage my MS fatigue at work?

Fatigue can make many tasks seem overwhelming, but there are some simple changes, or ‘MS work hacks’, that will make a big difference. Here are a few ideas: 

• Use your lunchtime to relax and save energy, rather than rushing around doing the shopping. 
• Speak to your employer about changing your working hours, so you don’t have to travel during rush hour and can avoid hot, stressful commutes. 
• Ensure regular breaks throughout the day. Set a reminder in your phone to prompt you or build them into your outlook calendar. 
• Do your most important work when you feel at your strongest. 
• Pace yourself! You aren’t superhuman. It’s okay to say no to extra tasks if you just don’t feel up to it. 
• Many workplaces are now much more flexible when it comes to working from home, particularly since the Covid-19 pandemic. So if it’s appropriate for the work you do, don’t be afraid to start that discussion with an employer.

What support can I access?

As part of the Equality Act, which protects people with MS (and other conditions) from any form of discrimination, employers are expected to consider making 'reasonable adjustments' for employees with MS. There is no precise definition for what constitutes a 'reasonable adjustment' but examples might include changing your working hours, ensuring you have regular breaks, securing you a parking place close to the entrance, or providing a fan if you find your MS symptoms worsen in the heat. Your employer should not charge you for these adjustments. If the adjustments required to keep you comfortable at work are more costly than your employer would like, they can apply for a grant to cover the costs from the Access to Work service (www.gov.uk/access-to-work). You can also use this service if you are self-employed, to allow you to maintain your own business. 

If it’s something your workplace offers, you may find it useful to talk to an Occupational Health professional about your situation. Together, you can look at your workplace and see what you can do to minimise any issues you’re experiencing. They may be able to advise on specialised equipment that could help. If you do not have an Occupational Health team at work, you and your employer can use the free Fit for Work service for advice.

Do I have to tell my employer about my MS?

You are not required to tell your employer about your condition unless there are specific health and safety risks, you drive as part of your job, or if you are in the armed forces. However, adjustments cannot be made unless an employer has been told, and early disclosure can be really important if you are to get the support you need. 

Talking to your employer and colleagues about your MS may feel daunting. MS can often be misunderstood, and it’s natural to feel worried about how they might react. You could point your colleagues to the MS Trust website, films and publications to learn more about the condition - our information sheet on explaining MS to others might be a good place to start. Do remember that if you tell your employer about your MS, you still have a right to confidentiality.

What can I do if my employer isn't being understanding?

If you feel your employer isn’t providing adequate support, or you feel you’re being discriminated against, there are further steps you can take and organisations you can turn to for advice. Before raising a complaint formally, you may want to consider talking to your employer first about your concerns. You could arrange an informal meeting with your manager to discuss these concerns and make suggestions on how they could be resolved. 
If conversations with your employer aren’t successful, you could reach out to the organisations below for further advice. 

• ACAS: www.acas.org.uk/dealing-with-workplace-problems 
• Equality and Human Rights Commission: www.equalityhumanrights.com/en/multipage-guide/dealing-discrimination-employment 
• Disability Law Service has an MS Legal Line: www.dls.org.uk/ free-advice/ms-legal-advice-line 
• Citizens Advice: www.citizensadvice.org.uk/work/problems-at-work 
• If you're part of a trade union you could contact your union representative about your situation at work for further advice and support.

Covid-19 and work 

We know that many of you will have questions and concerns around work and Covid-19. It is an ever-changing situation, but you can find the latest up-to-date information on our coronavirus webpage at www.mstrust.org.uk/coronavirus. Or get in touch with our Enquiry Service at ask@mstrust.org.uk / 0800 032 38 39