For people with multiple sclerosis (MS), difficulty walking is not just about physical limitations. It is also shaped by emotions, social interactions, and how easily people can take part in everyday life, a review study found.
The findings highlight the many factors that can negatively affect walking in MS, and the need for broader efforts to improve accessibility and awareness across society.
“There is a need for enhanced advocacy efforts that extend beyond infrastructure, targeting the immediate social networks and broader communities of individuals with MS,” researchers wrote. “Research is pivotal in recognising emotion and mindset as central, not peripheral, to the walking experience.”
The study, “The walking experience of persons with multiple sclerosis: a systematic review with evaluation of the sensitivity of the ICF framework to the lived experience,” was published in Disability and Rehabilitation.
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MS affects walking through physical, emotional, and social challenges
MS is a neurodegenerative disease that can cause a range of symptoms, including muscle weakness, fatigue, and loss of balance. While walking often plays a key role in maintaining independence, many people with MS struggle to walk — not only because of physical limitations, but also because emotional and societal factors can make everyday activities more difficult.
Exactly what shapes the walking experience for people with MS is still not fully understood. To learn more, researchers at Murdoch University, in Australia, reviewed more than 200 quotes describing real-life walking experiences shared by people living with MS.
“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,” Emily Wood, a PhD candidate in the School of Allied Health and the study’s first author, said in a Murdoch University press release.
The quotes were drawn from 90 studies involving 1,813 people with MS. Using thematic analysis, the researchers identified recurring ideas and patterns. They used both inductive analysis, where themes emerge directly from the text, and deductive analysis guided by the ICF framework.
The ICF, or International Classification of Functioning, Disability and Health, is a World Health Organization framework used to describe health, disability, and participation in society.
“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,” Wood said.
Four main themes emerged from patients’ walking experiences
Four main themes emerged from the analysis. The first focused on adapting to physical barriers, which were “identified as the cause of many accessibility issues within the home and community,” the researchers wrote.
Many patients described struggling with stairs, uneven ground, and long distances. Fear of falling, along with the need to carefully plan outings, often reduced their willingness to walk.
“I felt very self-conscious about my barely walking and just ended up staying home. I was concerned about tripping, falling and then going someplace I hadn’t been before. I was concerned about just if there’s steps,” one patient said.
The second theme involved navigating society and negative reactions from others, such as staring, judgment, or misunderstanding. Some patients described feeling discriminated against or treated differently. As one patient shared: “I can hardly walk to the shower room without someone stopping me and commenting, ‘Already drunk today?’” These social pressures led many to avoid public places, even when physical access was not a barrier.
The third theme focused on emotion and mindset. Walking difficulties were closely tied to frustration, embarrassment, grief over lost abilities, and anxiety about falling — emotions that influenced decisions about when, where, and whether to walk.
“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,” one person said.
The fourth theme centered on personal relationships. Partners, family members, and friends were often supportive, but that support could sometimes feel discouraging or limiting. For example, constant concern or overhelping could reduce a person’s sense of independence. Parents with MS often described feelings of guilt or embarrassment.
“My daughter told me to stop walking with them basically because it’s embarrassing when I fall,” one patient said about their 6-year-old daughter.
ICF framework falls short in capturing lived walking experiences
The ICF framework did not fully reflect the emotional and social burden described by people with MS.
“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 walking assessments that can be conducted within the community,” Wood said.
The findings suggest that barriers to walking for people with MS are often external, meaning they stem from the environment or social interactions, rather than from the individual alone. As a result, the researchers emphasized that effective support should address not only physical limitations, but also emotional well-being, relationships, and social environments.
