One in two people with MS have been challenged for using accessible facilities

Almost half (48%) of people living with multiple sclerosis (MS) in the UK 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, more than 1,600 people living with MS in the UK were surveyed to understand the full impact of public judgements, and to challenge assumptions about MS.

One in five people (21%) with MS said they had been questioned or challenged for using an accessible toilet and even more (22%) for using a Blue Badge parking space, with many reporting being shouted at, harassed or even spat at.

The survey also revealed that over half of people with MS (51%) have avoided using accessible facilities, like toilets marked for disabled people, for fear of being questioned, challenged or judged.

More than one in four people with MS (28%) say that fear of judgement has stopped them from leaving the house and almost two thirds (65%) of people with MS 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 and the majority are diagnosed in their 30s and 40s. 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 95% of those surveyed saying they experience at least one invisible symptom, such as fatigue, brain fog or pain. And of those, half (50%) 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.

Mariya Nadeem, 25, lives in London and works as a PR Executive for a tech company. She was diagnosed with relapsing MS two years ago after experiencing migraines and tingling sensations. She now lives with a range of invisible symptoms including fatigue, brain fog, nerve pain and bladder urgency.

Mariya says: ‘A few months ago I was at an exhibition at the British Museum and I urgently needed the toilet. There was a massive queue because it was a Saturday afternoon, and my MS-related bladder issues mean I can’t wait, so I used the accessible toilet. A man with a child started screaming at me in front of everyone, saying people were queueing because of me. No one stepped in. It was horrible.

‘I have a RADAR key to unlock accessible toilets, but I often avoid using it because I don’t feel ‘disabled enough’ even though I know I’m allowed to. I also feel uncomfortable taking priority seats on buses or the Tube. If someone older or visibly disabled gets on, I feel judged, so I usually just give up my seat. All of this has forced me to grow a thicker skin. People will often make comments like ‘oh, you look fine’, which they mean as a compliment, but it shows how little people understand invisible disabilities.’

Mariya’s experiences aren’t unusual. The survey also reveals that 81% of people with MS 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 survey respondents (56%) have felt judged for their visible symptoms, such as mobility, balance and tremors.

Antje Ronneberger is originally from Germany and now lives in Devon. The 57 year-old retired GP was diagnosed with relapsing MS in 2019, and her symptoms include balance problems, fatigue and bladder issues.

She says: ‘I’ve felt judgement. My walking distance is limited and I have trouble getting out of a car in a normal space. I’ve had people come up to me and ask, ‘why are you using a Blue Badge?’ and I’ve had people saying I shouldn’t use an accessible toilet. I’ve even been spat at by a person in a wheelchair because they did not think I should be using my Blue Badge.’

MS-UK Chief Executive, Amy Woolf, said: ‘Too many people living with MS are being made to feel like they have to justify themselves just to use the support they need. For many, symptoms are not always visible, but that does not make them any less real.

‘MS affects everyone differently and can change from day to day. Someone might be able to do something one day and struggle the next, which is why assumptions can be so harmful.

‘At MS-UK, we hear how these assumptions can affect people’s confidence and willingness to go out. This MS Awareness Week, we are asking people to think again and take a moment to better understand MS.’

Nick Moberly, Chief Executive of MS Society, added: ‘These findings are hard to read, and are a reminder to the public that not all disabilities are visible. MS can be debilitating, exhausting and unpredictable but we also see such amazing resilience and strength in our community. We encourage everyone to take some time this week to listen, learn, and understand MS before saying something that could hurt or offend. No one with MS should be challenged or questioned about their condition.’

For more information about the campaign search #MSThinkAgain.