Worthing woman opens up about her embarrassing MS symptoms to help start conversations during MS Awareness Week

The new national charity campaign MS Unfiltered has found more than a third of people with the condition have avoided seeking medical help for symptoms like bladder and sexual problems due to embarrassment.

For Hannah Dow, a Chichester-based digital safety officer for West Sussex County Council, being able to connect with others has been a vital support, as living with the many problems associated with MS has been isolating, especially being so young.

She has been experiencing symptoms since she was eight years old and was diagnosed with the relapsing form of MS in 2021.

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Hannah said: "I had all sorts of symptoms growing up, including pain, issues with my spatial awareness and vision problems. At first I was told it was just growing pains and later I was told it was hormonal changes.

"I felt so much shame about my body because I knew something was wrong and I didn’t know anyone else going through it. It felt very isolating."

Since she was given the diagnosis, Hannah has been able to connect with others living with the condition and receive support. But she still struggles with a range of symptoms, including some she finds embarrassing.

Hannah explained: "My bladder retention is terrible and it’s a difficult topic to discuss. When you think about bladder issues you imagine older people, so as a younger person it can feel embarrassing.

"I can walk okay now but I do have altered sensations and some days I can’t tell if I’m walking correctly. I’ve received odd looks when I’ve had to use my walking stick out and about.

"My MS means that I sometimes end up slurring my words. I do public speaking in my job, so I’ll often do vocal warm-ups before presenting. Sometimes I’ll give a disclaimer at the beginning, like ‘it sounds like I’m drunk but I just have MS'.”

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More than 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. 

Research for MS Unfiltered was carried out across the UK as a collaboration of seven charities – MS Society, MS Trust, MS Together, MS-UK, the Neuro Therapy Network, Shift.ms and Overcoming MS.

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 it is needed. 

Living with ‘embarrassing’ symptoms has meant one in five people keep their symptoms hidden from their partners, with half saying they wouldn't feel comfortable raising sexual dysfunction problems with a healthcare professional.  

Amy Thompson, founder and chief executive at MS Together, said: “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.”