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Tips from a counsellor on telling people about MS

My name’s Wendy and I volunteer with the MS Society in Belfast as a trainee counsellor. Having counselling myself helped me deal with my MS diagnosis in 2013.

I was afraid for the future as I didn’t know what lay ahead. With counselling I was able to share my thoughts, feelings and frustrations in a confidential safe space. There were plenty of tears, anger and ‘why me?’ questions. I learnt to accept my diagnosis.

I know how hard it can be to talk about MS

I found talking about my MS hard at first, as part of me was in denial. But when I accepted it, it got easier to share if I was having a bad day.

The more I talked about MS the easier it became, although that happened over a few years. Now I freely talk about my MS without fear of judgement, and I believe that was down to the fantastic counsellor I had at the MS Society and supportive family and friends.

Here's my tips for telling people about MS.

1. There’s no right or wrong time to tell people

Do what’s right for you and when you’re ready, as accepting that you have MS can be difficult to process.

Telling people you have MS can be hard but talking about your MS to someone who’s supportive can help you deal with your diagnosis, emotionally and practically. It can help just to talk about how you are feeling and what MS is like for you.

2. Be prepared

Talking about your MS can make you feel anxious and nervous especially if it’s your first time explaining it. It can help to be prepared, think about who you’re telling, and decide what information you’d like to share.

It could help to practise with someone you trust first to give you confidence.

People you tell might not know anything about MS. Learn about your MS and how it affects you, write it down if you think it might help and refer back to it when explaining your diagnosis.

3. It’s up to you how much you share

Share how much you are comfortable with - this can vary depending on who you’re talking to. You may feel that you can share a lot with one person but only give basic details to someone else and this is OK.

You should never feel pressured to tell people that you have MS and only share with people who you feel safe in doing so.

4. People’s reactions can vary

People’s reactions to you telling them you have MS can vary from person to person. Most people will be incredibly supportive, and some might need time to process the information.

It is also helpful to talk to someone you trust about how others reactions may have an impact on your wellbeing.

Unhelpful reactions don’t mean people don’t care - they maybe feel they’re trying to help but don’t know how or have much information about MS. It might be helpful to direct people to the various MS websites so they can learn more on how MS can affect you and how they can be more supportive.

5. Writing it down can help

Writing about your MS can help if you’re struggling to tell someone. You can explain to the person how MS affects you. Writing can also help process your own thoughts and feelings.

‘Cog fog’ can be difficult for many of us, especially when wanting to talk about MS. Keeping a journal or a diary about your thoughts and feelings works for some people. This can give you something to refer to when talking to someone about your MS, and when you have your appointments with the hospital or doctors.

6. You have rights at work

Disclosing that you have MS to an employer can be worrying. It's important to give yourself time to think through what you want to do. And it may help to talk it through with a trusted person first.

You do not have to inform your employer unless you work in the armed forces, your MS may affect health and safety in the workplace, or sometimes when you drive for your job.

Read about disclosing MS when you drive for your job

You’re protected against discrimination because of your MS in your employment by the law.

If you need reasonable adjustments to do your job or time off for MS appointments you may decide to inform them.

If you do decide to tell your employer there are various people in the workplace that can support you, like occupational health, union reps, your manager and human resources. If you feel that you have been or are being treated unfairly you could talk to the person directly or ask your union rep to help you with this. If you feel that you need extra support, and are not sure which way to turn the MS Helpline can give you emotional support and information.

Read more about MS and work

7. You’re not alone: there’s lots of information and support

The MS Society has a big range of booklets and information on their website that can help you learn more about your MS from being newly diagnosed, telling friends and family (and specific tips for telling children) to managing symptoms. There’s also lots of info on invisible symptoms like fatigue which may help you explain them to others.

You can also search the website for local support near you. Our Belfast Centre (email [email protected]) offer counselling if you live in Northern Ireland, or you can contact the MS Helpline from anywhere in the UK for emotional support and information. They can also let you know where you might find counselling near you. Call 0808 800 8000 or email [email protected]

Read more about telling people about MS