MS patients ‘too embarrassed’ to speak to doctors about some symptoms

Charities stress there are ‘no taboo subjects’ on condition

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.

Paige Barclay, 24, was 22 when she was diagnosed with relapsing MS, which she said was "catastrophic" at the time and left her feeling "hopeless." Photo: Paige Barclay/MS Society/PA Wire

A poll of 1,426 people living with the condition revealed 85 per cent of patients feel one or more of these symptoms are embarrassing.

Some 38 per cent had avoided speaking to clinicians as a result.

Of the total, 59 per cent said they felt embarrassed of bladder issues, while 27 per cent said they were ashamed of sexual dysfunction.

A little under half (48 per cent) 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.”

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".

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".

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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.”

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.