Photo: Family of woman with MS sat on the sofa at home laughing

MS in the family: we're siblings with MS

Brother and sister Rodney and Grace both have MS. They live a few minutes apart in Belfast. They told us what it’s like to be siblings with MS.

Grace, 56, was diagnosed with MS in 1997. She’d been living with MS for eight years when Rodney, now 43, was also diagnosed.

Grace’s story

All my symptoms pointed to MS

I was 37 when I was diagnosed with MS. I’d been having symptoms for about two years, including numbness and problems with my vision.

Eventually my GP referred me to a specialist. She didn’t want to tell me what they were looking for. But I asked: ‘Are you testing me for MS?’ I’d been researching my symptoms, and everything seemed to point that way.

I was booked in for an MRI on 21 November. But on 7 November, I went blind. I was at home, cooking dinner, and suddenly I couldn’t see. I was taken to hospital. Tests confirmed I had MS.

I was relieved when I got my diagnosis. I thought ‘Now I know what this is, I can put it in a box, and get on with living around it.’

I started volunteering – and I haven’t looked back

It wasn’t until the following year that I contacted the MS Society. After chatting to a support worker, I started volunteering on reception at the Resource Centre. I’m still volunteering all these years later! I also got involved with the Belfast Group, eventually becoming Chair.

I was scared when Rodney thought he had MS

Rodney was living in England when he started getting symptoms. Before he was diagnosed, he phoned me and said he was having problems. He was being sent for tests, and he thought it might be MS. I was more scared for him than I’d been for myself.

When he was diagnosed, Rodney stayed positive and kept on living his life. He carried on working, and playing football and golf.

When Rodney moved back to Belfast, I talked to him about the MS Society and the ways he could get involved. He joined the Belfast Group committee, and organised events for young people. It really helped him.

We know what MS feels like

Our other siblings are supportive, but they don’t understand in the same way. We have so much empathy. We know what it feels like.

Rodney’s story

Being diagnosed with MS was a relief

For me, the diagnosis was a relief. I’d been having symptoms for about 18 months – I had a lazy foot, some numbness and tingling, and problems with my eyesight.

Grace had MS, so I knew what I was facing. My reaction was ‘OK, I’ve got MS. Now what can I do to help myself?’

My stubbornness kept me working

I carried on working full-time as a hospitality manager in hotels. But over the past five years or so, my MS has got a lot worse. I’ve had limit my duties – now I work part-time as a porter. I’m going to be finishing work soon. My stubbornness, frustration and independence have kept me working. But I’m finally listening to my body.

Grace is always looking out for me

I talk to Grace a lot. If I’m experiencing something new, I’ll ask if she’s experienced it too. She was Chair of the Belfast Group for years, so even if she hasn’t been through something, she’ll know where I can go for information.

I know Grace worries about me. She can see the differences in me physically and mentally.

We see each other two or three times a week. And we speak on the phone all the time. Grace always asks how I am – she’s always looking out for me.