More than a third of patients living with multiple sclerosis (MS) in the UK have avoided seeking medical help for certain symptoms as they are too embarrassed, according to a survey.
A number of charities have now joined forces to stress there are “no taboo subjects” when it comes to the condition.
MS has a wide range of symptoms including fatigue, muscle spasms and issues with vision, as well as sexual, bladder and bowel problems.
A poll of 1,426 people living with the condition revealed 85% of patients feel one or more of these symptoms are embarrassing.
Some 38% had avoided speaking to clinicians as a result.
Of the total, 59% said they felt embarrassed of bladder issues, while 27% said they were ashamed of sexual dysfunction.
A little under half (48%) said they were embarrassed by problems with walking, such as stumbling.
MS Society, MS Trust, MS Together, MS-UK, the Neuro Therapy Network, Shift.ms and Overcoming MS have joined forces to launch a new campaign, MS Unfiltered, which will aim to break down stigma and ensure patients do not feel alone.
Nick Moberly, chief executive of the MS Society, said: “Although MS symptoms like bladder issues, sexual dysfunction and mobility problems are common, they can be difficult to talk about.
“Troublingly, our new research shows many people feel embarrassed by their MS symptoms. This has resulted in people avoiding seeking medical help and even feeling the need to hide their symptoms from loved ones.
“We want to break the stigma and give people the confidence to speak up when they need support. Our free MS Helpline is available to anyone affected by MS and we urge people to find out what support is available by visiting our websites.”
Amy Woolf, chief executive of MS-UK, said her organisation believes “there are no taboo subjects when it comes to your health and we’ve been proud to talk openly about all aspects of MS for many years”.
Lucy Taylor, chief executive at the MS Trust, added that the condition is “incredibly varied, and no two people will experience the same range and intensity of symptoms”.
“As a result, it can be easy to think you are the only person experiencing problems such as bladder and bowel issues, cognition problems or sexual disfunction. This leaves people feeling isolated and alone,” she added.
Reality star Kerry Riches, 40, who appeared on ITV’s Big Brother in 2023, lives with MS and is a spokesperson for the MS Unfiltered campaign.
She said: “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 MS Society on this campaign as I want to show the unfiltered side of MS and show others that they are not alone.”
The MS Society estimates that there are more than 130,000 people living with MS in the UK, with almost 7,000 new cases per year.
Paige Barclay, 24, who lives in Dundee, was 22 when she was diagnosed with relapsing MS, which she said was “catastrophic” at the time and left her feeling “hopeless”.
Her main symptoms are brain fog, fatigue and migraines, but she admitted sexual sensations have also been different since her diagnosis, although she has not spoken to a doctor about this.
“When I go for my appointments I convince myself it’s so minor and that they don’t want to hear about it,” Ms Barclay said.
“I feel embarrassed about raising sexual problems because it makes me feel like I’m not functioning well as a person.”
Ms Barclay has also been too embarrassed to apply for jobs as she sometimes forgets words.
“I worry that people won’t take me seriously,” she added. “I’ve put off talking about a lot of things for way longer than I should have.
“I once had a UTI which is very common with MS. But I put off dealing with it for several weeks before my partner decided that enough was enough and phoned the doctor for me.
“Fear and shame stops me from talking about these symptoms.”
Dr Panna Muqit, an NHS GP and honorary senior lecturer at the University of St Andrews, warned that patients are “inadvertently avoiding potential solutions” to their issues by not speaking up.
“Promptly sharing your symptoms can prevent the problem from escalating by allowing the exploration of new treatments, or adjustments to your diet or lifestyle,” she added.
