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'I was told I was far too young to have MS'

Isobel Fry & Lauren Hirst
BBC News, Manchester
BBC Wearing a navy blue round-necked T-shirt, Amy Thompson is standing on a countryside path surrounded by hedges and trees. Amy, with long, blonde hair, is smiling directly at the camera.BBC
Amy Thompson posts about her life with MS using the handle "But You Don't Look Ill" on Instagram

Amy Thompson was only 21 years old and living her dream life working in Paris as an intern for a fashion consultancy when everything "turned upside down".

She was diagnosed with multiple sclerosis (MS) despite being told she was "far too young" to become one of the estimated 150,000 people in the UK living with the incurable condition.

Seven years later and Amy, a French and business management graduate from Worsley in Salford, Greater Manchester, is determined to raise awareness of MS, which affects the brain and spinal cord.

The 28-year-old, who regularly posts updates on her Instagram account But You Don't Look Ill, spoke to BBC North West Tonight as part of a six-part series about invisible disabilities and illnesses.

Amy Thompson Amy Thompson is on the side of a mountain where parts of it are covered in snow. She is smiling directly at the camera and has her hands in her pockets. She is wearing a black coat and grey hat.Amy Thompson
Amy was completing an internship when she received her MS diagnosis

"I don't look ill.

"I started to experience numbness in my left leg, and I ignored it for a few days.

"Eventually, I went to the doctor, and he kind of dismissed it a little bit.

"I asked him: 'Do you think it could be MS?

"'I'm really concerned as I've now got this other symptom,' and he replied: 'No - you're far too young.'

"But things progressively got worse.

"Then I went to see a neurologist and straight away she said 'you've got MS'.

Amy Thompson Amy Thompson has her arms stretched out and is smiling at the camera during a walk in the countryside. There is a large lake in the background and rolling hills and trees. She is wearing a black waterproof coat, gloves and hairband. Amy Thompson
Amy said she started her Instagram account "to make the invisible, visible"

"My main symptom is fatigue - just feeling absolutely exhausted all the time, no matter how much you sleep.

"There are other symptoms like eye problems including optic neuritis (inflammation of the optic nerve), some numbness, and unusual sensations in limbs.

"It's difficult knowing there's no cure.

"After I told people about my diagnosis they said things like 'you don't look ill', 'you look so well', 'you're too young to have MS' and 'I thought you'd be in a wheelchair?'

"And so I was inspired to start an Instagram account called But You Don't Look Ill.

"When I was first diagnosed I could not find anyone that was young that was talking about having MS.

"So I decided to just try and be that person for someone else.

"Through sharing my story, I realised there were so many other young people in the same boat that were just looking to find others that they could relate to.

"Then I decided to start looking into the process of setting up a charity.

"At the end of 2022, we got the official registration for MS Together.

"We now provide lots of different services to people and we focus on people aged 18 to 35 who are living with MS.

Amy Thompson Amy is sitting on a chair next to an advertising sign for her charity. It reads: "MS Together. Our charity provides services of advice and support to people people affected by multiple sclerosis (MS) with a particular focus on those aged 18-35 who are living with MS."Amy Thompson
Amy set up her charity after finding a lack of support tailored to young people with MS

"What has been amazing through this whole thing is that I've just found such an amazing purpose that I really didn't expect.

"When I first got diagnosed, I was so terrified about it changing my life in a lot of negative ways.

"There have been a lot of bumps along the road and it hasn't always been easy, but so many amazing things have come from it.

"It is quite cheesy, but it probably is a bit of a superpower.

"And I am really grateful for it because I now have such a passion for what I do."

Amy's story features in a special six-part BBC North West Tonight series about invisible disabilities and conditions. You can watch it on BBC One in the Northwest of England and the Isle of Man from 18:30 BST on Friday 4 July. It will also be available on the BBC iPlayer.

Listen to the best of BBC Radio Manchester on Sounds and follow BBC Manchester on Facebook, X, and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.