More than a third of people who have Multiple Sclerosis (MS) keep their condition secret, it has been revealed.
In a survey of over 800 people living with MS, 35 per cent said they have kept their diagnosis private.
Of the people who hid it,
- one in ten (nine per cent) kept it a secret from their partner
- a third (33 per cent) kept it a secret from at least one family member
- more than a third (34 per cent) kept it a secret from their employer
- over half (59 per cent) haven’t told their colleagues.
When asked why they kept it a secret:
- over half (52 per cent) said they were concerned others would feel sorry for them
- over a third (37 per cent) feared discrimination
- four in ten (40 per cent) were worried it would impact their career
- three quarters (74 per cent) said talking about MS made them nervous, or worried they weren’t explaining it properly.
The research, carried out by the MS Society, has been released to mark MS Awareness Week, which is encouraging people to #LetsTalkMS.
One 50-year-old man with MS told NR Times he fully agrees with the findings of the research.
“I completely understand why so many people keep their MS diagnosis a secret, I do too,” he says.
“I told my wife, who I felt needed to know and it would’ve been worse trying to hide it from her, but beyond that no-one does and I don’t want them to.
“I don’t want to worry my parents or my family, I don’t want friends to feel sorry for me and reconsider whether to invite me to things as they used to.
“I’ve recently found a new job and I’m absolutely certain I won’t be telling my employer or colleagues about my MS until such time as I have to. I’m new in this organisation and don’t want people making judgements about what I may or may not be able to do.
“I agree with every one of the findings of the research. Clearly many others have the same fears that I do about making your condition public, and then having to live with the consequences of that.”
The MS Society says it is committed to supporting people to be more open about their MS, and that no-one should have to keep it a secret.
“More than 130,000 people live with MS in the UK, and we know many struggle to talk about it,” says Ed Holloway, executive director of digital and services.
“This MS Awareness Week you’ll find new resources on our website to help start a conversation about MS, and others sharing their stories of speaking out for the first time.
“No-one should have to keep their MS a secret, and our free MS Helpline and local groups can be a great lifeline too.”
