MS patients are ‘too ashamed’ to talk to doctors about some symptoms

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More than a third of patients with multiple sclerosis (MS) in Britain have avoided seeking medical help for certain symptoms because they felt too ashamed, according to a study.

A number of charities have now joined forces to emphasize that there are “no taboo topics” when it comes to the condition.

MS has a wide range of symptoms, including fatigue, muscle spasms and vision problems, as well as sexual, bladder and bowel problems.

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A survey of 1,426 people with the condition found that 85% of sufferers find one or more of these symptoms embarrassing.

About 38% had avoided talking to doctors as a result.

Of the total, 59% said they were ashamed of bladder problems, while 27% said they were ashamed of sexual dysfunction.

Just under half (48%) say they are 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 aims to break the stigma and make to ensure that patients do not feel alone. .

Nick Moberly, chief executive of the MS Society, said: “Although MS symptoms such as bladder problems, sexual dysfunction and mobility problems are common, they can be difficult to talk about.

“Worryingly, our new research shows that many people are ashamed of their MS symptoms. This has led people to avoid seeking medical help and even feel the need to hide their symptoms from their 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, CEO of MS-UK, said her organization believes “there are no taboo topics when it comes to your health, and we are proud to have been able to talk openly about all aspects of MS for many years.”

Lucy Taylor, CEO of 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 that you are the only one experiencing problems such as bladder and bowel problems, cognitive problems or sexual dysfunction. This makes people feel isolated and alone,” she added.

Reality star Kerry Riches, 40, who appeared in ITV’s Big Brother in 2023, lives with MS and is a spokesperson for the MS Unfiltered campaign.

She said: “Although bladder and bowel problems will always be a bit embarrassing, for many of us living with MS it is simply something we have to come to terms with.

“My bladder sucks, when I sneeze I pee, I never go anywhere without a spare pair of pants and I’ve been wearing sanitary pads since I was 24 because I have to pee or leak all the time. I’ve even wet myself on a plane before.

“I’m working with MS Society on this campaign because 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 every year.

Paige Barclay, 24, who lives in Dundee, was 22 when she was diagnosed with MS, which she said at the time was “catastrophic” and left her feeling “hopeless”.

Her main symptoms include brain fog, fatigue and migraines, but she admitted that sexual sensations have also changed since her diagnosis, although she hasn’t spoken to a doctor about this.

“When I go to my appointments I convince myself that it’s so small and they don’t want to hear about it,” Ms Barclay said.

“I’m ashamed of bringing up sexual issues because it makes me feel like I’m not functioning well as a person.”

Mrs. Barclay is also too embarrassed to apply for jobs because she sometimes forgets words.

“I’m afraid people won’t take me seriously,” she added. ‘I’ve put off talking about a lot of things for much longer than necessary.

“I once had a urinary tract infection, which is very common with MS. But I put off treating it for several weeks before my partner decided enough was enough and called the doctor for me.

“Fear and shame keep 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 possible solutions” to their problems by not speaking out.

“By sharing your symptoms immediately you can prevent the problem from escalating by enabling new treatments or adjustments to your diet or lifestyle,” she added.