MS Awareness Week: Survey reveals the impact of assumptions
We carried out a survey with the biggest UK MS charities to understand the impact of public misconceptions about MS.
This MS Awareness Week, we’re challenging common public assumptions. We surveyed more than 1,600 people living with MS in the UK to understand the harm these assumptions can do.
A lack of understanding around MS symptoms
MS affects everyone differently. And many people have to manage invisible symptoms.
Almost all (95%) of the people who filled in our survey said they live with at least one invisible MS symptom. Of those, half (50%) have been made to feel like their invisible symptoms aren’t real. And 81% of people report that they’ve been told that they ‘don’t look sick’, or received similar comments.
At the same time, some people told us that they’ve felt judged for both their visible and invisible symptoms. Including their mobility, balance or tremors.
Challenged for using accessible facilities
Accessible toilets and disabled parking spaces can make managing MS a little easier. But many people living with MS have experienced judgments from other people when using them.
Mariya Nadeem lives with relapsing remitting MS. She told us how other people have treated her when she’s used accessible toilets:
A few months ago I was at an exhibition at the British Museum and I urgently needed the toilet. 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.
Mariya isn’t alone. One in five people (21%) with MS said they had been questioned for using an accessible toilet. 22% told us they had been challenged for using a Blue Badge parking space. And many people told us that they’ve been shouted at, harassed or even spat at.
Living in fear of judgment
The survey revealed that almost two thirds (65%) of people with MS felt judged or treated differently because of their condition. And more than one in four people with MS (28%) said that fear of judgment has stopped them from leaving the house.
These results show how harmful other people’s judgments can be. And that they can prevent people from living well with MS.
Nick Moberly, our Chief Executive, says:
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.
Encouraging people to #MSThinkAgain
This MS Awareness Week, we want people to understand how unpredictable MS can be. And that no two people experience it in the same way. We want people to learn more about MS. And to remember that not all disabilities are visible.
Throughout the week, we’re sharing stories and resources to encourage people to #MSThinkAgain. We’ve teamed up with seven of the UK’s biggest MS charities to challenge harmful assumptions. And help people living with MS to be heard.
Find out more about the campaign and how you can get involved
