How I cope with the ups and downs of life with MS

Tue 14 May 2024


It’s common for people with MS to experience emotional difficulties at one time or another. Rebbecca shares some of the ways she’s learned to look after her mental, as well as physical wellbeing.

I’ve had so many different emotions and reactions to my MS: sadness, being overwhelmed, some frustration, worry, shock, looking for solutions, fighting and acceptance.

When I was diagnosed I accepted it very quickly. ‘I’ve got MS – right, where do I go from here?’ And that’s when I reached out and found the MS Society.

Speaking to the MS Helpline

Luckily, when I’ve felt my emotions starting to rise, I’ve reached out for help when I’ve needed to. 

I rang the MS Helpline about an assessment I had at work. I was overwhelmed. I left work, and spoke to the helpline. I was crying. Questions going through my mind included “Will I be able to work again?” “Is what I need a problem for my employers?”. They helped to support me through that moment. They listened and they guided me through my emotions. We discussed what steps I could take going forward.

Work have supported me with reasonable adjustments as well as occupational therapy and Access to Work recommendations. They help me move forward, open to reviewing and updating as I go along.

Read more about work and MS

Emotions after an MS relapse

A relapse I had in September 2022 was the worst emotional time. I literally broke down.

The relapse caused the whole left hand side of my body to go numb. I had to deal with the physical symptoms, so at first my emotional side switched off. I went into autopilot.

It wasn’t until weeks afterwards, when someone asked me how I was, that I started crying. I actually allowed myself to be sad.

I spoke to my GP and different neuro-rehab specialists (including an occupational therapist and physiotherapist) and they really helped. I was offered a 5-week neuro-rehab emotional support session called ‘MS adjustments’. It was a group session, but there were just two of us.

They talked to us about all the different stages of grief but you don’t always get them in that order. It can be frustration one minute, then denial. It’s not a clear cut direction, you might feel a few things at once.

I had another relapse in July 2023, my most recent relapse. I rang the helpline to talk through the way forward with the treatment options that were discussed with me. It helped me to think about what would be the right direction for me.

Read about managing relapses

Counselling has helped me feel lighter

I’ve had quite a few bereavements and I had some counselling for that. And the MS came up in those sessions. The counsellor said “you’ve had another bereavement too. You’re also grieving the person you were before MS.”

I found counselling supportive and helpful. I could just cry and cry and offload my emotions. Afterwards, it felt like my bag of concerns and worries was a bit lighter. It helped me get a bit of perspective and feel clearer.

It’s good to have a space to say what I’m really thinking. Stress can affect my MS. If I’m really in my head with it, or something has happened which has had an impact on my MS, I do need to have that space.

I’m fortunate that my GP knows me and so I can have a little counselling with them, too. I’ll call them and we’ll have a ten minute conversation just like a little check in. They’ve been there from day one, they know the ups and downs I’ve had.

Drawing on strategies that help me

I’ve had cognitive behavioral therapy (CBT) too for anxiety. I first had it before my MS and it helped me get strategies that could help my thinking process.

I was having panic attacks and we’d talk about identifying what I was thinking and then what could help me get out of that moment. That could be to drink some water, ring somebody who calms me. I’m learning my triggers, and what to do when I get triggered.

I go to webinars run by a meditation centre called Innerspace. They have different speakers, sometimes book recommendations, or tools they think would be good. [You may find similar services in other places].

I have found going for a walk has been helpful to clear my head if things feel overwhelming. Also, spending time with my family and friends – they are my support and we create lovely memories. Talking with my closest friends - I have felt comfortable to confide in them.

Read about getting help with emotional support

Changes over time

I’m a deep thinker and I’ve gone through different waves of emotion. I had quite a lot of emotional support before my diagnosis.

I’m a worrier but that improved through the support I’ve had.

I’ve learnt to go with the flow more and as time has progressed I don’t worry so much. I’m more open now about how I feel.

A lot has happened in my family, and to see others struggle and be strong gives me strength as well. It helps me put things in perspective.

I will be OK

I can’t say I’m happy with the MS but I know how to manage it the best way for myself. I’ve accepted it which has allowed me to focus on moving forward. I know things might not always be OK, but I will be OK whatever that looks like.

MS has made me think differently. If I want to do something then I do it now. I do things that make me feel happy and make me feel good.

You're not alone

Our MS Helpline can give you emotional support. Call 0808 800 8000 or email [email protected]. We’re here Monday to Friday, 9am to 7pm except bank holidays.

You can also can call Samaritans 24 hours a day from any phone, on 116 123

Find out about other ways to get emotional support