GIF: 3/4 shot of Dee Dee smiling against a blue background

MS can be very lonely

I was diagnosed in 2008 with highly active relapsing MS. I really love live music. But MS means I can’t go to a gig unless I've done my homework and know there will be somewhere for me to sit.

It took me 5 years to get a diagnosis, they thought it was a mini stroke. I’d been having unexplained falls, and kept slurring my words. I knew very little about MS at the time, just knew something was wrong. I was working as a social worker at the time, which was very high pressured, but am now retired on the grounds of ill health.

Invitations stopped coming

Nowadays I have more issues with balance. When your mobility is affected, you’re not able to be as active as you’d like to be, which affects your social life. You tend to say no before you say yes. There are things you’d like to do or take part in but aren’t physically able to, so you can’t. After a while that leads to less and less invitations.

As a lot of my social life was linked to work as well, when I stopped working that was a big loss. I got more free time but was also in the house more.

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Help is good but I'm not about pity

MS can be very lonely. I live alone. My family aren’t round the corner, and they’ve all got busy lives and young children. It’s not easy to drop everything. I do have a carer who comes regularly and have a few close friends, but don’t often want to go out, so unless people come to visit me I spend a lot of time by myself.

People reacted differently to my diagnosis. Some were surprised, mostly a bit worried, they wanted to find out more about how it would affect me, or what they could do to be helpful. The last thing I want is to be patronised. Help is good, but I’m not about pity.

I forget my limitations

One or two struggled to get their head around everything, or didn’t quite know how to respond. I guess they felt a little bit uncomfortable. I lost touch with a few people.

I would like to say I haven’t changed, but that wouldn’t be true. MS has forced me to change. My body doesn’t work in the way it used to – I was always known as being very capable, a go-getter. I’m not that same person now. I don’t always remember my limitations, so when they show up it’s a real shock. Like I can’t just park anywhere, or carry five bags home from the shop. I just forget!

Campaigning for change

Getting involved in the campaign community's been a great way to connect with live politics first hand. In 2017 I went to the disability hustings to challenge MPs from all parties about PIP reassessments.

I enjoyed the hustings and was impressed with the speakers. Although some of them were definitely more relatable than others! Since then I've shared my story for other campaigns and featured in the MS Connections loneliness exhibition.

You can make a difference this Christmas

Living with MS can leave people feeling lonely and isolated. We're here to connect everyone with the information, care and support they need.

You can help make sure no one has to face MS alone.

Donate now to create connections this Christmas