Almost half (48%) of people surveyed and living with multiple sclerosis (MS) in Wales have been questioned or challenged for using accessible facilities - like Blue Badge parking spaces, accessible toilets and priority seats on public transport – a new survey from leading MS charities has found.

To mark this year’s MS Awareness Week campaign, MS Think Again, 90 people living with MS in Wales were surveyed to understand the full impact of public judgements, and to challenge assumptions about MS.

Almost a quarter (24%) said they had been questioned or challenged for using an accessible toilet, and 22% for using a Blue Badge parking space. The survey also revealed that of those with MS surveyed in Wales:

· Over half of people (57%) have avoided using accessible facilities, like toilets marked for disabled people, for fear of being questioned, challenged or judged.

· Almost a third (31%) say that fear of judgement has stopped them from leaving the house.

· Almost three quarters (73%) of people said they felt judged or treated differently because of their condition.

The campaign is led by a collaboration of the UK’s biggest MS charities including MS Society, MS Together, MS Trust, MS-UK, Shift.ms, Overcoming MS, Neuro Therapy Network and Talks with MS.

Over 150,000 people live with MS in the UK, including 6,100 in Wales. MS is a condition that affects the brain and spinal cord, impacting how you move, think and feel.

Symptoms are different for everyone, and often invisible, with 96% of those surveyed in Wales saying they experience at least one invisible symptom, such as fatigue, brain fog or pain. And of those, over half (56%) have been made to feel like their invisible symptoms weren’t real. Survey respondents said this lack of understanding of MS is contributing to increased judgment from members of the public.

Gemma Williams is 48 and lives on a sheep farm in Carmarthenshire with her husband and two children. She was diagnosed with MS at 21 after ending up in hospital with numbness from the chest down. Her symptoms now include fatigue, pain, and occasional difficulty walking.

Gemma said: “Sometimes I’m questioned about using my Blue Badge because there is nothing about my appearance that suggests I have a disability. I still use the badge when I need it, but I have had occasions where people have challenged me about it.

"People often assume that I am capable of doing things when I am not. If I get on a bus when my legs are weak, people do not assume I might need a seat. If I go into a pub, people do not assume that I need a chair. But there are times when I am simply not capable of standing.

“I think that when people hear the term ‘MS’ - they expect someone to look very ill. When you do not fit that image, people often seem confused.”

The survey also reveals that 84% of respondents in Wales have been told they ‘don’t look sick’ or received similar comments. And it isn’t just those with invisible symptoms who face judgement, over half of Welsh survey respondents (59%) have felt judged for their visible symptoms, such as mobility, balance and tremors.

Shelley Elgin, Country Director for Wales, said: “Living with MS can be debilitating, exhausting and unpredictable. And on top of that, facing judgement and harassment can make life even harder than it needs to be.

“These troubling new findings show us how widespread negative attitudes and assumptions are, and remind us how important it is to speak out and raise much-needed awareness about MS. We urge everyone to take some time this week to listen, learn and understand MS.”