Should I tell my work I have MS?

If you have been diagnosed recently with MS, or you’ve had MS for years, looking for work can be incredibly scary and lead to feelings of unease. I’ve blogged about this topic before… but feel that it’s so important to talk about again at the moment as many people find themselves out of work.

I have recently been looking for a new job, and not because of the current pandemic. Sadly, the situation has meant that finding work is even harder than usual (but this is the same for everyone!!) This blog will go through some of the challenges of sharing you have MS with managers and colleagues, and what to do if you think you’ve not been treated fairly.

One of the quandaries we face as people with MS is who do we tell?! I can’t answer this for you as I struggle with this myself. Most people with MS shouldn’t feel obliged to tell their employer if they don’t want to, however there are some jobs and instances where you need to disclose it, including if your MS impacts on your health in the workplace, if you work in the army, if you drive for your job and have had any restrictions placed on your licence.

If you are worried about how your employer will react, I’ve found that most people are most interested and want to know more. There have been instances where I’ve been discriminated against and things have been challenging, but I’ve found that it’s been refreshing to share that part of my life with others, and has enabled me to explain some of my symptoms when I have not been well.

So how do you open that conversation?

Sadly, I can’t advise you on how best to have a difficult conversation… that comes down to the type of relationship you have with you manager. I perhaps would prefer an informal chat first, and follow it up with an email; but you might prefer a formal meeting. I think as I go into my new role, I will seek some advice from OH about how best to approach it.

No matter whether you choose to have an informal or a formal chat, I always think it’s best to prepare some notes. I would recommend covering things like what MS is, how long you’ve had it, the typical symptoms you have and how MS might impact your job, any support you might need, what medication you have.

During any meeting with your manager about this type of topic, I would always recommend taking notes and following up afterwards with a summary of what you discussed. I have been in the position before where I did not do that, and did not have a record of when I first told them and who I told.

Whilst you might think it’s helpful to tell your manger that you have MS, you may not wish to tell your colleagues. If you do decide that you want to share your diagnosis with them, it’s worth bearing in mind that you cannot control how they will feel about it or react. I’ve mostly had a good experience when I’ve told people, but if I’m honest, I do think it’s changed how people have perceived me.

Recently I have been in a position where other people have shared my diagnosis with others without me saying that was ok. Remember that your manager (or anyone you tell in confidence) should not share this news unless you have said that it is ok to do so. It is helpful if you are really clear, in writing, if you want the news shared or not.

I appreciate that not everyone has a positive experience at work, and I have been on the receiving end of this. If you feel that you are being treated poorly at work, whether you have MS or not, there is something you can do about it. Contact acas for more advice.

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