MS Unfiltered: Joint MS campaign for MS Awareness Week
This MS Awareness Week (22-28 April 2024), NAoS members the MS Society, the MS Trust and Neuro Therapy Network have teamed up with MS charities across the UK to launch their MS Unfiltered campaign.
The campaign comes in response to a recent study which found that over a third of people with MS have avoided seeking medical help due to embarrassment.
Thanks to the MS Trust for providing the following press release from all of the organisations involved.
"Over a third (38%) of people living with multiple sclerosis (MS) have avoided seeking help for symptoms, like bladder and sexual problems, due to embarrassment, new research shows.
The survey of over 1,400 people with MS in the UK revealed the majority (85%) find one or more of their symptoms embarrassing. Over half (59%) said they were embarrassed by bladder issues, while more than a quarter (27%) were embarrassed by sexual dysfunction, and just under half (48%) were embarrassed by walking issues, such as stumbling or not walking in a straight line.
The findings from a collaboration of MS charities – MS Society, MS Trust, MS Together, MS-UK, the Neuro Therapy Network, Shift.ms and Overcoming MS – have been released as part of a new campaign, MS Unfiltered, to mark MS Awareness Week 2024.
Over 130,000 people in the UK live with MS, with 130 diagnosed each week. The condition affects the brain and spinal cord, impacting how people move, think and feel. The sensitive and intimate campaign aims to shine a light on the huge range of symptoms and daily challenges that people with MS face. It also seeks to encourage and empower people with MS to speak up and get support when they need to.
Living with ‘embarrassing’ symptoms has meant 1 in 5 (22%) people keep their symptoms hidden from their partners, with half (49%) saying they wouldn't feel comfortable raising sexual dysfunction problems with a healthcare professional.
Paige Barclay (24) lives in Dundee with her partner and three cats. She was diagnosed with relapsing MS two years ago, and some of her main symptoms include brain fog, fatigue and migraines.
She says: “Sexual sensations have felt different for me since getting MS, but I’ve still not spoken to a healthcare professional about it. When I go for my appointments I convince myself it’s so minor and that they don’t want to hear about it. I feel embarrassed about raising sexual problems because it makes me feel like I’m not functioning well as a person.
“MS is such an invisible condition. So many of the symptoms are hidden and you feel like you have to justify everything. So I’m always worried about whether I’ll be believed. My partner is great at reminding me ‘it’s healthcare professionals’ job to help with these things and they will believe you’.”
Nick Moberly, Chief Executive at the MS Society, says: “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.
“That’s why this MS Awareness Week, we want people to know that whatever they’re dealing with, they’re not alone. We’re delighted to be teaming up with six incredible MS charities to shine a light on the wide range of symptoms people with MS face. 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.”
Lucy Taylor, Chief Executive at the MS Trust, says: “ MS 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. This new research for MS Awareness Week highlights just how common these problems are for people living with multiple sclerosis and how important it is to seek help if you are struggling.
“This MS Awareness Week, we want to break the taboos which exist around many common symptoms of MS. We want to make people realise they are not alone in their struggles. By teaming up with six other MS charities we are using our collective voices to ensure the message is heard. If you need support with any aspect of your MS it’s essential that you speak up and reach out to your Health Professional or the MS Trust helpline. They are here to help you make sense of MS, regardless of what symptoms you have.”
Amy Woolf, CEO of MS-UK, says: “At MS-UK, we believe 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. We have a Choices information booklet dedicated to bladder and bowel issues, a bi-monthly magazine which frequently covers sexual health issues, and a free helpline who are happy to help with any topic – nothing is off limits. We want to normalise conversation around all aspects of MS – no one should feel too embarrassed to ask for help.”
Alexandra Holden, Chief Executive at Overcoming MS, says: “We want everyone affected by MS to know that there is hope and that it is possible to live well with MS. That is why it is so important for us to work in partnership with other MS charities to actively create an environment where people can confidently talk about their symptoms, from bladder and bowel disfunction, to low mental health or sexual issues. Through encouraging more conversations with healthcare professionals, to creating strong support networks with family, friends or the MS online community in our Live Well Hub, no one should have to deal with MS symptoms alone.”
Amy Thompson, Founder and CEO at MS Together, says: “For many people, talking about ‘embarrassing’ MS symptoms - especially with a healthcare provider - can feel difficult, awkward and overwhelming. But the fact that this embarrassment has led to some people avoiding seeking medical help shows that something needs to change. So, to help make the conversation a little easier, we’ve teamed up with six other brilliant MS charities to raise awareness of these symptoms and to empower people with MS to talk about their concerns when they need to. Our private online community can also connect you with hundreds of likeminded individuals who truly understand what it’s like to live with these symptoms. And our one-to-one support team can provide a listening ear for you to voice your concerns. Remember - you’re not alone and together we are stronger.”
George Pepper, co-founder and CEO of Shift.ms, says: “Being diagnosed with MS can feel like the world being pulled out from underneath you. I know from personal experience that it can be difficult to disclose your condition to the people closest to you, and there are some symptoms MSers feel more comfortable talking about than others. Keeping struggles hidden can lead to chronic isolation, and makes it difficult for MSers to get the help they may desperately need.
Breaking the silence around hidden or embarrassing symptoms is a hugely powerful campaign that we’re excited to champion with six other MS charities for MS Awareness Week 2024. Together, we want to make it easier for MSers to speak to their support networks without fear of being stigmatised or dismissed. If we break these barriers today, the newly diagnosed MSers of tomorrow will feel more empowered and better equipped to manage their own health.”
Join the conversation by searching #MSUnfiltered."
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