NEURO NEWS

MS Unfiltered

22 April 2024

To mark MS Awareness Week (22-28 April 2024) we are launching a national campaign aimed at breaking down the stigma of MS symptoms that many people find embarrassing.

MS Unfiltered is a collaboration between Neuro Therapy Network, MS Society, MS Trust, MS-UK, MS Together, Overcoming MS and Shift.ms. The sensitive and intimate campaign will shine a light on the MS topics that can feel taboo or difficult to talk about. It encourages people to talk honestly and openly about everything from bladder control and sexual dysfunction, to brain fog and mobility challenges.

Our pre-campaign survey involving over 1,400 people living with MS in the UK revealed some significant and worrying results:

85% are embarrassed by one or more of their symptoms
55% have kept symptoms hidden from family members
22% have kept symptoms hidden from their partner
38% have avoided seeking medical help due to embarrassment
59% are embarrassed by bladder issues
48% are embarrassed by problems with walking
27% are embarrassed by sexual dysfunction
49% feel uncomfortable raising sexual dysfunction with a healthcare professional

Kerry Riches (40) - a contestant on ITV’s 2023 Big Brother series - lives with relapsing MS and is a spokesperson for the #MSUnfiltered campaign. Kerry says: “While bladder and bowel issues will always be slightly embarrassing, for many of us living with MS it’s just something we have to come to terms with. My bladder is rubbish, if I sneeze I wee, I never go anywhere without a spare pair of knickers and I have been wearing pads since I was 24 because I am constantly weeing or leaking, I have even wet myself on a plane before. I have teamed up with this campaign as I want to show the unfiltered side of MS and show others that they are not alone.”

Dr Panna Muqit, an NHS GP and Honorary Senior Lecturer at the University of St Andrews, says: “I speak to many patients living with MS and understand the difficulty in discussing challenging symptoms with your GP. Sharing your symptoms can prevent the problem from escalating by allowing the exploration of new treatments, or adjustments to your diet or lifestyle. In addition to your GP, there are other healthcare professionals, such as an MS nurse, an incontinence specialist, or a neurologist, who can assist you with potentially embarrassing MS symptoms. It’s crucial to remember that you are not alone. I strongly encourage patients to engage with others who are experiencing the same symptoms through support groups or MS charities.”

Throughout MS Awareness Week, the MS Unfiltered campaign will be sharing the results of our survey, along with people’s unfiltered stories, and signposting support for those affected. We hope it will shine a light on the huge range of symptoms and daily challenges that people with MS face, and encourage them to speak up when they need support. Join or search for the campaign by using the hashtag #MSUnfiltered

If you need support with managing MS symptoms, visit our online directory to find your nearest therapy centre:

Find a therapy centre near you >

Support is also available from the following MS charities:

MS-UK >