'My diagnosis is not a death sentence': 20 year old Essex woman shares reality of life with MS

Social media is often the place where we present our best lives, posting pictures where we look our most perfect. 

But, when a teenage Mia Vallely from Rayleigh in Essex logged into her instagram account, she felt a disconnect between her life and what she was seeing on the screen.

Diagnosed with relaspsing remitting multiple sclerosis in 2019, she was just about to sit her A-Levels, before heading to Nottingham University to study politics.

The symptoms had been there for four years, but she was finally given her diagnosis at this pivotal point in her life.

Initially Mia's diagnosis knocked her confidence, but by being open about her condition she is trying to help others Credit: Mia Vallely

Determined her diagnosis wouldn't hold her back, Mia went to university, but initially struggled to talk openly about her MS and how it impacts her everyday life.

From numbness, to a tightness around her chest and once losing her sight completely in her right eye, her MS is unpredictable.

Multiple sclerosis is a neurological disease with no cure. It affects your brain and spinal cord and happens when your immune system isn't working correctly.

Mia said, "You do play it on a day to day basis. So if I wake up and feel rough in the morning, it's best to not chance it and go out that evening, but if I am feeling good, I am going to use my good days and live them to the fullest, and then kind of rest on the bad days."

Mia shares honest insights into her life living with MS on her instagram account 'Not My MS' Credit: ITV Anglia

Her sight came back, and somedays her symptoms are minimal, whereas others she will need to rest and sleep for most of the day.

Learning to listen to her body, slowly, Mia began to talk to her housemates and new university friends about her condition.

It gave her the confidence to bring some more honesty to her homepage, and she started Instagram account 'Not my MS'.

Mia wanted to be more authentic on social media by showing all aspects of her life with MS Credit: Mia Vallely

Here, she doesn't just post the 'glammed up' selfies from nights out that she may post on her personal account, she too posts pictures of her struggling, in pain, tired, shaking because of her MS or in hospital recieving treatment.

Mia wanted to debunk the myth that people with MS are 'incapable', by showing you can be both a normal 20 year old and a person with a chronic illness.

Her account 'Not my MS' tackles other misconceptions, as Mia says often people don't associate chronic illness with younger people or try to group everyone with MS in together, rather than addressing that all people with MS are different.

  • Hear more from Mia above

She's also come up against people who question her diagnosis or judge her for needing to sleep and rest, with comments like, 'you're just lazy'.

Mia is hoping that by addressing these issues online she can help people be more understanding and that by talking about her symptoms, she could help other young people recognise the signs.

Mia is now backing a campaign by the MS Society called #LetsTalkMS to try to help others have the confidence to stand up and speak.

MS affects 130,000 people in the UK, yet according to a recent survey by the charity, over a third (35%) admitted they had kept their condition a secret. Of those who had hidden it:

  • One in ten (9%) have kept it a secret from their partner

  • A third (33%) have kept it a secret from at least one family member

  • More than a third (34%) have kept it a secret from their employer, while over half (59%) haven’t told their colleagues

  • Ed Holloway from the MS Society talks about the charity's findings

Ed Holloway from the MS Society said, "It is because they are concerned people will feel sorry for them or they may be discriminated against or it might affect their career."

Mia shares those concerns, initially not wanting to tell her friends at university because she didn't want sympathy or for them to think she couldn't socialise with them, and be left out.

She said, "I didn't want them to put me in a separate box, or kind of not count me in in things, I wanted to go to university and be full in. But, they did understand when I did eventually open up and explain."

The MS Society wants those with the condition to feel more comfortable talking about it Credit: ITV Anglia

Now, she's encouraging people with MS to try to talk more openly too, believing the more people are educated about the condition, the fewer misconceptions there will be.

"The thought of going to work and telling someone. I don't want to be put in a box, or kind of associated in a way that I won't be able to be the best at my job or be given future promotions.

"People with MS have unconscious negative thoughts about it that they assume other people have. They assume people don't know enough about it, and rather than further educate them that we can do things, they isolate and retract."