'Whether I like it or not MS is part of who I am' - Derry woman speaks out about living with MS

Derry woman Catherine Doran lives with relapsing remitting MS.

Catherine, who received her diagnosis when she was just 26 years-old while preparing for her wedding, shares her experience of coming to terms with her diagnosis and the importance of positive conversations around MS. 

This MS Awareness Week, which runs from April 28 to May 4, Catherine is supporting a new national charity campaign, MS Conversations. Spearheaded by a collaboration of the UK’s MS charities - MS Society, MS Trust, MS Together, MS-UK, the Neuro Therapy Network, Shift.ms, Overcoming MS, and Talks with MS – the campaign aims to encourage people to start conversations about their multiple sclerosis (MS).  

More than 5,000 people in the North, and more than 150,000 people in the whole of the UK, live with MS. It’s a condition that affects nerves in the brain and spinal cord and impacts how people move, think and feel.  

Symptoms are different for everyone and are often invisible. But one thing everyone with MS has in common is that they’ll all have conversations about their condition, whether they’re explaining it to family members or friends, asking an employer or medical professional for support, or opening up to a new partner. Those conversations won’t always be easy.  

Catherine believes that we need to start having more conversations about MS especially when it comes to getting access to healthcare. She also shares how important it is to be open and honest about her condition but that can be difficult particularly when talking to her two children about MS.  

Catherine explains: “I was diagnosed in 2009 after persistent headaches, bladders issues, tiredness and collapsing twice for no obvious reason. My GP referred me for an MRI which revealed lesions on my brain which along with my other symptoms revealed I had MS. The conversations during those early days had a real impact. My diagnosis appointment was awful. I was alone and the diagnosis was such a shock which meant a lot of the information went over my head. I didn’t think there was anything serious wrong with me. My symptoms were fleeting, and I was leading a busy lifestyle burning the candle at both ends like most people in their 20s. 

“Telling my husband, who was my fiancé at the time, and my parents was very emotional. There were lots of tears, but they were supportive and proactive which was very important to me. I immediately told my employer and work colleagues. Everyone was supportive which made the diagnosis easier to accept.  

“Whether I like it or not MS is part of who I am. It has shaped how I see the world and live my life. I’m not ashamed of having MS and being open about it makes it easier when I have a relapse because then it’s not a surprise to the people around me. Talking to my children about my MS is not as easy though as in many ways I want to protect them from its impact. But I’ve always tried to be open and honest with them using language that’s appropriate for their age. We’ve organised several fundraising events and preparing for those opens up casual conversations with my girls about why raising money for the MS Society is so important to me.” 

The eight charities are encouraging everyone affected by MS to get involved on social media throughout MS Awareness Week by using the hashtag #MSConversations to share their most memorable MS interactions.   

When asked how important MS conversations are to her, Catherine added: “I am very open by nature but sometimes I can get in my own head and overthink things especially if I experience a new symptom and that’s never helpful. Talking about these to someone else is crucial so I don’t carry that worry on my own.  

“Unfortunately access to healthcare has been problematic. I used to see my MS nurse once a year which I found really helpful, but I haven’t seen one since before the pandemic in 2020. I’ve also only seen a neurologist once in person in the last six years. Although the staff are amazing there isn’t enough of them and as a result MS patients are being failed – this is incredibly frustrating.  

“A conversation that is critical to people living with MS is the neurology review which we’ve been promised since 2018. We need to start having a conversation about fixing the serious issues facing neurology services in Northern Ireland and ensuring people like me aren’t left trying to manage conditions like MS on our own.” 

Stewart Finn, Country Director, MS Society Northern Ireland, said: “Talking openly about MS is vital for increasing awareness, breaking down stigma, and ensuring everyone can access the support they’re entitled to. But starting those conversations can be hard.

“This MS Awareness Week we’re pleased to once again be partnering with other leading MS charities across the UK, this time shining a spotlight on MS Conversations. Encouraging conversations about MS is at the heart of everything we do year-round at MS Society Northern Ireland, from inviting people to contact our free MS Helpline, to supporting Local Groups to bring people together, and promoting volunteers’ stories. This week we’re taking that one step further and sharing tools and advice to help more people have conversations about their MS. 

“We’d like to say a huge thank you to Catherine and everyone else who’s shared their experiences so far. There’s still time to join in using #MSConversations on social media.”   

Join the conversation and find support by searching #MSConversations on social media. Follow MS Society Northern Ireland’s MS Awareness Week coverage on Facebook, Instagram and X.