MS sufferers ‘too embarrassed’ to ask for help with symptoms
NEARLY half of people living with multiple sclerosis have felt too embarrassed by their symptoms to seek medical help, according to a new survey.
More than 250 patients in Scotland were asked about their experiences with the incurable neurological condition ahead of MS Awareness Week, which begins today.
The vast majority (85%) said they had felt embarrassed by at least one of their symptoms since being diagnosed.
Three quarters of MS patients said they would hide details of their symptoms due to embarrassment, and 43% said this even extended to seeking medical help.
Almost two thirds of patients (61%) said they had avoided telling family members about some of their symptoms.
Half of respondents to the MS Unfiltered study said they had felt embarrassed by issues such as their walking.
Well over half (58%) said that seeing more representation of people living with these types of “embarrassing” symptoms would give them the confidence to talk about them.
Morna Simpkins, director of MS Society Scotland, said the findings were “heartbreaking”.
Thanking the patients who had taken part in the research, she added: “MS is hard enough to live with but no one should be missing out on vital healthcare, flexibility at work, or support from family and friends because they’re too embarrassed to talk about what they’re experiencing.
“We hope that highlighting some of the less-talked about symptoms during MS Awareness Week will encourage people to speak out and seek the support they deserve.”
Scotland has some of the highest rates of MS in the world.
In 2019, research by Edinburgh University estimated that women living in Orkney had a one in 50 lifetime risk of developing it.
It is much more common in northern regions and rates are twice as high in females than males.
Although MS can develop at any age, it is most commonly diagnosed among people in their 20s, 30s or 40s.
It occurs when the immune system mistakenly attacks the protective coating surrounding nerves in the brain and spinal cord, resulting in cumulative damage and disability over time.
Symptoms can include bladder problems, difficulties with balance, and muscle spasms.
Carrie Robinson, 53, was diagnosed with relapsing remitting MS in 2018.
When a bad relapse a few years ago left her struggling to walk, she kept her symptoms hidden from all but her closest family.
Mrs Robinson, from Terregles in Dumfries, said: “It happened during the Covid-19 lockdown and the fact we weren’t socialising or seeing people as normal meant I was able to hide what was happening to me from everyone except my husband and my stepdaughter.”
Mrs Robinson said she didn’t want people to “view me differently” or cause unnecessary worry.
She added: “My balance has always been a big worry for me, as I feel selfconscious about people seeing me and making assumptions that I’m maybe under the influence or just clumsy.
“I have also worried that if people knew about my condition, they might not want to include me in plans, and would make assumptions about me based on ignorance of the condition.
“There are still times when I choose
I want people to see me for the other things I do. I don’t want to be viewed differently
not to share my condition with people. I’m not embarrassed by it but I don’t want to be defined by my MS.
“I want people to see me for the other things I do and I am. I don’t want to be viewed differently or treated differently.”
Dr Panna Muqit, a GP in Bulmullo, Fife, who also teaches medical students at St Andrews University, said she invites patients with MS to share their experience of diagnosis and the impact of the condition on their lives with her undergraduates.
She added: “It is crucial that patients feel comfortable discussing sensitive issues or embarrassing symptoms with a medical professional.
“These issues can significantly impact their quality of life, and there are measures we can take to mitigate the effects of these symptoms on their daily functioning and well-being. There is no need to suffer in silence; we are here to help and have heard it all before.
“If verbal communication of these issues proves challenging, I encourage patients to write them down and hand them to their GP during an appointment, or send them into the practice before a phone consultation.
“This allows the GP to prepare beforehand. We look forward to hopefully hearing from patients who have been encouraged by the MS Unfiltered campaign to seek support for symptoms they’ve previously found difficult to discuss.”