‘But you look so well’: What it’s like to live with an invisible illness like MS Many people ‘look fine’ for many years, even though they might be battling severe symptoms

Where I come from, the phrase “you’re looking well” has various meanings as you progress through life. In your teens, it’s the highest of compliments from a bashful beau, blushing to his temples as he stares fiercely at the ground. In your university years, it’s a mark of approval from an Irish Mammy, satisfied that you haven’t starved yourself without her hearty cooking.

‘You don’t look sick’, family friends say with a raised eyebrow

And, then, if you happen to be diagnosed with an autoimmune condition, it comes with an air of hope, or worse, scepticism. My godmother has optimistically convinced herself that I don’t really have MS, because I “look so well”. (I gently remind her that the needle they stuck in my spine would suggest otherwise.) Family friends profess it with a sympathetic head tilt, local busybodies with a raised eyebrow: “You don’t look sick.”

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Well, quite. I haven’t turned green, and none of my limbs are hanging off. In fact, MS apparently has one very specific side effect: an infusion of overwhelming, iridescent beauty, if the cacophony of compliments is anything to go by. (Hyaluronic acid? No, it’s multiple sclerosis, darling, you MUST try it!).

So it comes as no surprise to me that, on World MS Day, the MS Society is highlighting the challenges that people battling invisible symptoms encounter, with the theme #MyInvisibleMS. A survey revealed that six in 10 people have experienced prejudice, with half of those surveyed saying that they have been accused of exaggerating their symptoms.

‘A survey indicated that 93 per cent of people think that by challenging a healthy-looking person for using an accessible toilet, they are “standing up for the rights of disabled people”’

I get it. For most people, the term MS comes with an association of an elderly relative in a wheelchair. As a broad condition that affects people in all sorts of ways, many people “look fine” for many years, even though they might be battling severe symptoms, including numbness, fatigue, vision problems and cognitive issues.

Patients have reported being accused of being drunk if they stagger, or being lazy if they don’t give up their seat on the bus. One 22-year-old with MS shared a note on social media that had been left on her windscreen, which read: “You forgot ur wheelchair?” She had parked in a disabled spot, with necessary permit displayed, but her symptoms of nerve pain, fatigue and vertigo were obviously not clocked by the note-writer. “I might look well, but my gosh I’m going through hell on the inside,” she said.

It’s not the only condition where people struggle with prejudice. Last month, Crohn’s patient Muneeb Akhtar told i that he was sworn at for using a disabled toilet to change his leaking stoma bag. “There’s a general lack of understanding,” he said. “I think it’s seen by many as a bit of a tummy-bug-type thing that’s a pain but nothing serious.”

Akhtar was speaking as part of the Crohn’s and Colitis UK’s campaign, called Not Every Disability is Visible, aimed at changing accessible toilet signage. A survey indicated that 93 per cent of people think that by challenging a healthy-looking person for using an accessible toilet, they are “standing up for the rights of disabled people”.

The stigma of chronic illness still weighs heavy. Some celebrities have made a huge impact with their efforts to make the invisible visible, from Selma Blair rocking her cane at the Oscars to Selena Gomez speaking candidly about having lupus. But there’s a lot of work to be done to shift public perceptions of so many types of illness, from mental health struggles to chronic fatigue to gynaecological issues.

It’s usually nice to be told “you’re looking well”. It’s less nice when you’re being told that while someone is questioning your decision to park in a disabled space, or use a disabled toilet.

Having MS has opened my mind to the potential that other people might have “stuff going on”, and has made me kinder when someone is climbing a flight of stairs slowly, or when they ask if they can skip the queue for the loo.

Often, there’s far more than meets the eye – and the last thing I want to do is put another hurdle in their path.

Find out more at worldmsday.org. Twitter: @siobhannorton