A new study finds that for many people with multiple sclerosis, walking is hindered not only by physical symptoms but also by external emotional and societal challenges.

Researchers at Murdoch University, in Perth, Australia, conducted the first systematic review to analyze 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, a globally accepted framework developed by the World Health Organization to describe health and disabilities.

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

* Adapting to physical barriers: Practical challenges such as stairs, uneven surfaces, long distances, fatigue, fear of falling, and 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.”

* 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 neighborhood 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.”

* 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 ….”

* 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.’”

The researchers said throughout all the themes, the factors affecting walking were frequently perceived as extrinsic. They noted that because these barriers feel beyond their control, many people with MS described feeling increasingly disconnected, which can lead to withdrawal from community spaces.

They also said the study highlighted gaps in the ICF framework. The researchers suggest that to fully capture the lived walking experience, the ICF framework could be complemented with patient-reported outcomes, models that 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, the study’s authors suggest that emotion and mindset are recognized as central, not peripheral, to the walking experience.

The study published in the journal Disability and Rehabilitation.