“I work the same as I did before this happened. I promised myself I wouldn’t let it stop me or change things until I absolutely had to, so until that point I’ll keep on keepin’ on.”
A multiple sclerosis diagnosis doesn’t mean you have to stop working, but you might need to consider how to manage your MS with the demands of work.
Article medically reviewed by Karen Vernon an MS Nursing Specialist at Salford Royal Foundation Trust, UK.
So, now you’ve been diagnosed with multiple sclerosis, you’ll obviously have to give up work immediately, right? Wrong!
Although multiple sclerosis affects everyone differently, the chances are that, at some point following a diagnosis and while living with MS, your working and professional life could be impacted in some way.
However, here’s where we add a big ‘but’. There are no hard and fast rules about what you need to do about work. With MS most commonly diagnosed in people between the ages of 20 to 40 (though it can be younger and older), managing your multiple sclerosis while balancing the demands of work and a career is an important issue for many MSers.
What should you tell your employer, and when? Do you have to say anything? What rights do you have? How can you best manage working with MS? We’ll take a look at these common questions. But, before we dive into it all, let’s just stress this – you absolutely can continue working, while living with multiple sclerosis, if you choose to.
On the other hand, you might feel that your current career or line of work might not be the right thing for you. There’s no shame whatsoever in either stopping work or seeking a less demanding role.
After receiving a diagnosis for multiple sclerosis, one of the first work-related thoughts that may come to mind is often, ‘should I tell my boss?’ It can feel like a difficult situation, for some, and it’s understandable if you might feel worried about what kind of reaction you may get from your employer after telling them about your MS.
Things you might be concerned about can include:
It can feel particularly tricky if you’ve just started a new job – whether you’ve changed jobs since being diagnosed with MS, or have just received your diagnosis soon after joining a new employer. After all, who wants to have that chat with a new boss when you’ve only just learned the names of your colleagues? Not ideal at all.
Watch our short film about the dilemmas of disclosing your MS to your colleagues below
“When I started my latest job I told the senior management team but not any of my direct colleagues. I was too worried about people seeing me differently.” @Lollypopls
“I’ve just started a new job and am really anxious about telling my employer… my concern is more them seeing me differently or assuming I can’t do something.” @Sophs23
“Maybe you can wait a while, see what the team is like and only disclose to your boss and anyone else if you’re comfortable to do so.” @zino
First things first – the choice to tell your employer about your MS is yours. The choice of when to tell your employer about your MS is also yours. You’re in control of the timing.
You’re under no obligation to tell anyone – though there are a few exceptions. If you work in the armed forces, your work involves driving – a lorry driver, for example – or your multiple sclerosis could affect health and safety, you should tell your employer. If your occupation fits into any of those categories, you need to speak up.
If your general health is good, your symptoms are being managed, and there’s little to no impact on your ability to carry out your work, and perform the job you were hired to do, you might choose to say nothing at all. It may only be if and when your situation changes – if you find multiple sclerosis is beginning to affect your health during work – that you decide to disclose your condition to your employer.
“If you feel you can work day to day without any adaptations then you don’t need to say anything.” @shopaholic84
“I’ve been with the company nearly 7 years and have not needed one MS related sick day.” @shopaholic84
When you’ve made the decision to discuss your multiple sclerosis with your employer – whether that’s soon after diagnosis or much later – how should you best explain it?
As a starting point, always remember that it’s highly likely you know more about MS than your employer does, who may not be aware of exactly how it affects someone – in this case you. So, take the time to properly explain what it is and more importantly, what it is to you, personally.
At the risk of generalising, some employers might jump to inaccurate conclusions about multiple sclerosis, thinking it renders you incapable of working, or functioning – there are a lot of myths around, still. When you talk to your employer, make it clear how symptoms affect you, how often, and how it might – or might not – impact your ability to do your job.
We’re hoping that your employer is supportive, empathic and 100% understanding when they learn you have multiple sclerosis – and thankfully, many are. But, it’s worth being aware that you have rights in the workplace, with guidelines in place to help make sure you’re protected.
Though it’s not a label we like, is MS a disability? Officially, yes, which means if you have multiple sclerosis and work in the UK, you’re entitled to rights as covered in the Equality Act 2010. This is designed to protect you from being discriminated against in the workplace.
In the US, there are a number of legal protections, including the Americans with Disabilities Act (ADA), which covers multiple sclerosis.
The Equality Act includes a category called ‘reasonable adjustments’. If you find you need to make changes to your job role because you’re being affected by symptoms of MS, some of these will be covered by reasonable adjustments.
The UK government runs a Access to Work scheme which can benefit MSers. For example if you have fatigue and need to drive to work during the rush hour, you could be exhausted before even starting work. Through the scheme you may be able to get taxis to/from work, which could remove an element of stress, enable you to do your job better and ultimately stay in work for longer.
You have a right to ask for reasonable adjustments, so that you’re not placed at a disadvantage compared to another employee who doesn’t have a disability (in this case, the disability being MS).
What are reasonable adjustments? Well, in general terms they’re changes to your working routine, life or environment which can help make it easier for someone with multiple sclerosis to do their job.
These adjustments may cover fairly minor tweaks, like taking more breaks during the working day or being able to work more flexible hours, or even from home at times. They might also include time off for any medical appointments related to multiple sclerosis – including counselling or physiotherapy – and following relapses.
Reasonable adjustments can also include a change of job role within a company, if MS is causing complications in your existing position, and a review of the equipment you need to perform your job duties. Wheelchair access to an office might be one of these.
An employer has to consider a request for a reasonable adjustment. If you don’t feel the response is satisfactory or fair, you can consult an organisation such as ACAS, which can provide advice and help resolve disputes. You might also choose to contact an Occupational Health Therapist, who can assess your workplace and suggest improvements.
“My biggest struggle right now is balancing working in health care and taking care of myself at the same time.” @Wiebke
Juggling the demands of work with commitments in your personal life can be a challenge for everyone; throw multiple sclerosis into the mix as an unwanted curveball and it can be doubly difficult.
Even if you have a sympathetic employer, supportive colleagues, and the benefit of positive adjustments within your workplace, some days will still be a struggle. MS fatigue – one of the most common symptoms of multiple sclerosis – can make you feel tired during the day. You might experience pain with MS. You might find that you suffer from a lack of concentration, at times.
There are ways you can try to manage your time at work. Taking regular breaks throughout the day can help. If your workplace is busy, and noisy – even an open plan office environment can feel intense at times – finding somewhere quieter to work can be beneficial.
“Working in an office can be a bit overwhelming sometimes, too much going on and I know I am easily distracted, so I take myself off to an empty office, close the door and work in there.” @AndreaG
If your fatigue or other symptoms have a pattern, planning your work day around these can help. For example, if you typically tend to feel really tired in the afternoon, plan to tackle more difficult tasks in the morning, when you perhaps have more energy and focus. See if you can schedule meetings in the periods where you’re more alert. As much as you can, try to make your work diary fit in around you. We know it’s not always that easy.
Another tip – stick to your contracted hours. If you’ve previously had a tendency to work late, or later than your set hours, don’t. Finish on time, and don’t overdo it.
Our film Working It Out looks at how MSers juggle work while living with multiple sclerosis