Talking about MS at work: what I’ve learnt

I think when people are diagnosed they should be better signposted by healthcare professionals on how to get support at work. I was so terrified about telling my employer.  

How different employers have responded to my MS 

Over the years, I’ve had varied responses from employers when I felt the need to tell them about my MS. I’ve found they often struggle to understand the unpredictability of it. Sometimes there seemed to be a tick-box approach to support. In some cases, I’ve been offered support which hasn’t been followed up.  

I’ve also had positive experiences. Throughout my career there have been times when I’ve disclosed my MS during the job interview. And that’s led to an open discussion about the impact of my MS. And that conversation often (but not always) means we can discuss reasonable adjustments.  

There have been times when reasonable adjustments haven’t been put in place and I haven’t felt comfortable. And I’ve made the decision to leave a job, because for me I’m aware that stress isn’t good for my MS. 

Self-employed with MS 

It’s helped me to manage my health because I can be flexible with the day and hours I work. And I don’t need to ask to take time off for appointments.

I’m an approved independent mental health first aid instructor and an NLP certified life coach. I’ve done speaking events, I help people find a holistic approach to their care, and I’m in the process of becoming a corporate wellness coach. I’ve been doing so many things and putting myself out there.

I feel now I’m on the right track: this is my purpose, and my MS isn’t in vain. It’s a bittersweet journey.

My MS doesn’t define me, it’s a part of who I am, and it’s contributed to my success now.

It’s contributed to my life’s journey in such a positive way. It helps me to help others.

Here’s some of my tips for dealing with MS in the workplace

These are based on my personal experience – you might find other approaches work better for you.

• Find out what your rights are. Do your research, read your workplace’s polices. If you choose to disclose your MS, be your own advocate in the workplace. Make sure you have the right knowledge and understanding under your belt before speaking to your manager about your MS. So you know what you’re asking for.
• I think sometimes we think “I have to tell my employer! I need to do this, I need to do that!” And when they ask you what you need: you don’t know. Give yourself time to acknowledge your symptoms, so you know what you need. If it’s fatigue, for example, then you might need to ask for some extra breaks.
• When I needed to have a conversation about MS with a past manager I used the MS Society’s return to work form. That helped me assess what I needed.
• You can educate your employer and your team about MS by sending them information from the MS Society, I’ve found that useful. Don’t be disheartened though if they don’t read it.
• Contact Access to Work about reasonable adjustments. They will take you on a journey and hold your employer accountable for the things that you need in the workplace. And it’s not a ‘nice to have’, it’s a need.
• A motto that works for me is: you can reduce your hours but you don’t have to reduce your ambition. It might just take you a bit longer to get your head around certain things. With the right support, you can get there eventually.
• It can help to keep assessing how MS is impacting your day-to-day life. Reasonable adjustments at work may include reducing your hours, having more breaks, or discussing work tasks with your employer. And sometimes you might decide to change your role or change career direction. But you can apply your experience in different ways. For example, at the beginning of my journey I had symptoms and not a diagnosis. I was working in retail as a store manager and I started to feel overwhelmed. At first I wasn’t sure what to do. I did my research and when I knew what I wanted to do, I made the difficult decision to leave. I combined my experiences to become a vocational assessor of retail customer service staff and managers. This used my experience in a way that suited my needs. And since then I’ve changed career direction a few times. Do some research into what might work for you, talk about it to your family and friends.
• It’s worth looking into what benefits you could get to support you, for example if you feel you need to reduce your hours to manage symptoms like fatigue.
• Be kind to yourself, practice self-care, it’s so important. And if you’re not OK – seek professional help. There are therapists out there that have an understanding of long-term illnesses. You can ask your GP or self-refer. I did a self-referral through the NHS England talking therapies service. It took a long time and I had to follow it up but then they matched me up with a good therapist. You can find them privately, as well.
• Find a support network. In the past I couldn’t have imagined having this condition and being so positive. I have my days, I really do – who doesn’t. But at the same time, thanks to my support network, I can bounce back. My first step was to follow the MS Society on Instagram and then I started connecting with people online. That way, I’ve found friends in the MS community who’ve really been there for me. They get the workplace stresses and how it impacts us, so we can have those conversations.