In their own words: The frustration, stigma and emotion of walking with MS

A major Murdoch University review has found that for many people with multiple sclerosis (MS), walking is hindered not only by physical symptoms but also by external emotional and societal challenges.

Led by PhD candidate Emily Wood from the School of Allied Health, researchers conducted the first systematic review to analyse direct quotes from people with MS in the context of their walking experience, rather than relying on researcher interpretation.

Using quotes from 90 academic studies involving more than 1,800 people, the research team set out to understand what walking is really like for people with MS in their day-to-day lives.

A secondary aim of the study was to assess whether there was a gap in the International Classification of Functioning, Disability and Health framework (ICF), a globally accepted framework developed by the World Health Organisation to describe health and disabilities.

“Our goal was to centre the voices of people living with MS and understand, in their own words, what it truly feels like for them to walk in their homes and communities,” Ms Wood said.

“By bringing together these lived experiences, we also wanted to examine whether the ICF framework genuinely reflects what people with MS encounter every day, and our findings suggest it doesn’t capture the full emotional and social burden.”

Four key themes emerged from the voices of people living with MS.

1. Adapting to physical barriers
   • Practical challenges such as stairs, uneven surfaces, long distances, fatigue, fear of falling, the need to plan outings hindered their ability and willingness to walk.

   A person living with MS described accessibility issues: “Most places are accessible around town. The only place, my favourite café, I used to like to go there. It’s not … accessible that I can find, it has three steps to get in, so we don’t go. But most places are fairly accessible.”

    

2. Navigating society
   • Walking impairment resulted in altered societal expectations and dynamics such as, social stigma, judgement, staring, discrimination and misunderstanding.
   • These experiences caused many to withdraw from public spaces.

   A person living with MS described their difficulty navigating society: “Everyone in our neighbourhood is native to the area. I don’t like going out with this foot; I feel ashamed. I don’t go out myself because everyone looks at us, and the strangers among them stare at us; I feel ashamed. For this reason, I don’t go out, and most of the time, I am at home.”

    

3. Emotion and mindset
   • Walking was strongly tied to emotions such as embarrassment, frustration, grief over lost abilities, and anxiety about falling.
   • These emotional burdens significantly influenced whether and how people chose to walk.

   A person living with MS described the emotional burden of the condition: “I can’t do anything that I used to be able to do …I can’t play netball, I can’t play touch footy, I can’t walk in the dark …you lose everything ….”

    

4. Personal relationships

• Partners, family, children, and friends played a major role; sometimes supportive, sometimes unintentionally discouraging.
• Participants described spousal and family relationships as largely supportive, although sometimes well-meaning efforts unintentionally resulted in negative feelings.
• Parent–child relationships often evoked feelings of guilt and embarrassment.

A person living with MS described an incident with their six-year-old daughter: “My daughter told me to stop walking with them basically because it’s embarrassing when I fall. And she’s 6…I mean it’s like that because I walked with them this one particular day, and you know, I mis-stepped, just kind of fell over. But she turned around and looked at me and went, oh, mom ah, it’s embarrassing. I don’t want you to walk us because it’s embarrassing when you fall.”

Ms Wood said throughout all the themes, the factors impacting walking were frequently perceived as extrinsic.

“Because these barriers feel beyond their control, many people with MS described feeling increasingly disconnected, which can lead to withdrawal from community spaces,” she said.

Ms Wood also said the study did highlight gaps in the ICF framework.

“Although the ICF framework encompasses some emotional functions, its phrasing does not readily capture the sustained emotional burden that underpins the walking experience for people with MS,” she said.

“To fully capture the lived walking experience, the ICF framework could be complemented with patient-reported outcomes, models which explicitly aim to describe the walking experience with MS and other movement disorders, and walking assessments that can be conducted within the community.”

For clinicians, Ms Wood suggests that emotion and mindset are recognised as “central, not peripheral, to the walking experience”.

The paper, The walking experience of persons with multiple sclerosis: a systematic review with evaluation of the sensitivity of the ICF framework to the lived experience, is available in the journal Disability and Rehabilitation.