Life with MS is full of uncertainty. We asked our community which areas of life are impacted by MS. Read more to find out what you told us.
MS symptoms can come and go, and be mild or more severe. No one knows how their condition will progress over time. And this uncertainty impacts all aspects of a person’s life.
New research found two thirds of people with MS say they’re scared for the future because of the uncertainty of the condition.
Our survey of 1,200 people with MS revealed half (51%) felt isolated as a result of their unpredictable symptoms. And over three quarters (76%) said the uncertainty of MS was one of the biggest challenges they face.
A third (34%) were worried about access to future treatments. Over half (56%) said the unpredictability of MS had affected their career. And two thirds (63%) said it stopped them from socialising in the past.
Facing the future with MS
Lauren Robbin, 31, was diagnosed with relapsing MS two months ago. She lives with a range of physical and mental symptoms, and worries about how these may develop in the future.
Lauren says: “I have complete numbness in my right arm and leg, and constant pins and needles down my right-hand side. I have temperature sensitivity so anything cold on my skin is painful and I can’t feel heat. I also experience brain fog, insomnia, fatigue, my skin feels like it’s on fire, and I get stabbing pains down my leg. Day-to-day I can plod on but it’s uncomfortable and annoying.”
“I worry about my condition deteriorating. I don’t know what medication will work for me in the future and what the side effects might be. Another big worry for me is having children in the future. My diagnosis has really made me think about this. Thinking ahead is a roller-coaster, as I’m aware I could wake up tomorrow with a new symptom. I like to stay positive and think everything is going to be alright. But the reality is no one can tell me it will be OK. It’s scary not knowing what my future holds.”
How are people’s social lives impacted by MS?
When asked about the uncertainty of MS, over half of people surveyed (51%) said it had affected their friendships. While over a third (39%) said their romantic relationships had been impacted, with one in five (18%) saying they’d previously stopped dating.
Sarah Rawlings, our Executive Director of Research and External Affairs, says: “We may all think the future seems uncertain. But people with MS have told us an MS diagnosis can feel like a life sentence of uncertainty. MS is unpredictable and different for everyone. And our latest research highlights how this can have an enormous impact on people.
“More than 130,000 people live with MS in the UK, and we’re here for everyone affected by the condition. Our free MS Helpline, online forum and local groups can be an invaluable lifeline if you need support dealing with uncertainty. We also run regular virtual sessions on Living Well with MS which offer emotional and practical support for everyone living with or affected by MS.”
You’re not alone
We know the future can feel scary and uncertain if you're affected by MS. But we’re here for you, no matter where you are in your MS journey. You can call our MS Helpline for free, Monday to Friday, 9am to 7pm except on bank holidays. Or you can connect with other people affected by MS in our forum.
MS is unpredictable and different for everybody. This MS Awareness Week (25 April-1 May 2022) we’re shining a light on uncertainty and MS.