You Don't Look Sick: 'I had seven strokes in 24 hours when I was 20'

If you are standing in a crowd of people, there’s probably someone with an invisible illness – a condition that causes debilitating symptoms but you can’t usually see it at first glance.

You Don’t Look Sick is a series looking at those hidden conditions.

Each week, we speak to someone with a different condition about the judgement they face because they look ‘healthy’ to the outside world.

Last year, Luna Jarvis suffered a series of seven strokes in 24 hours last year at just 20 years old, which destroyed 20% of her brain.

She now struggles with numbness down one side of her body, cognitive issues and extreme fatigue.

The University of Lincoln student spent months learning to walk again and how to move her hands and still struggles day to day but because she looks young, she says strangers aren’t always kind.

‘People usually say things like “At least you’re all better now and working again” and that’s COMPLETLEY not the case,’ she says.

‘My brain is dead and that is never coming back, I think that in itself is quite tricky for people to grasp.

‘I got shouted at the other day by an old woman for using the disabled loo.

‘The stigma of ‘I look fine therefore I am fine’ is incredibly annoying when mobility wise I feel like an old woman but I’m in the body of a 21 year old so people don’t see that.

‘Just because someone looks fine doesn’t mean they are and age should not be a factor in how you are treated or perceived.’

On 7 February 2018, Luna, now 21,  was on a university trip to London. She left Lincoln at 5am on a coach.

At 10am, she started to feel the side of her face go tingly.

She explains: ‘It was like pins and needles except at the same time, it was nothing like that at all.

‘I couldn’t move my tongue properly either, so I turned to my friend beside me in panic and attempted to speak. It came out like “Robyn, helphh, my fahce isn’t workingg”.

‘Robyn flagged down the member of staff for the event and she said “Well, you’re too young to be having a stroke, and anyway if you were having a stroke your face wouldn’t be working. Yours is working, just not very well.”

Luna continued to feel ill, her face was drooping and the pins and needles started to spread down her left arm.

She found three paramedics at the event she was attending but they told her she probably had an ear infection.

What are the symptoms of a stroke?

The idea is think FAST

  • Face: Can the person smile? Has their face fallen on one side?
  • Arms: Can the person raise both arms and keep them there?
  • Speech problems: Can the person speak clearly and understand what you say? Is their speech slurred?
  • Time: If you see any of these three signs, it’s time tocall 999.

The FAST test helps to spot the three most common symptoms of stroke. But there are other signs that you should always take seriously. These include:

  • Sudden weakness or numbness on one side of the body, including legs, hands or feet.
  • Difficulty finding words or speaking in clear sentences.
  • Sudden blurred vision or loss of sight in one or both eyes.
  • Sudden memory loss or confusion, and dizziness or a sudden fall.
  • A sudden, severe headache.

Stroke Association

Really, Luna was having a series of TIAs, or mini strokes.

She says: ‘I got back on the coach to leave at 5pm, and I just slept all the way back to Lincoln because I had no idea what was going on. I didn’t want to deal with what was happening.

‘Robyn somehow got me home. Whilst she was relaying the day and my condition to my flatmates, I went to the bathroom.

‘When I went to leave, everything started to go wrong.

‘My entire world just span. Everything was moving backwards. In an urgent panic I manage to grab the door lock and pull it back whilst sweating profusely in panic.

‘My flatmates made me call 111. I kept hanging up because I was adamant I didn’t need any help.

‘When I eventually stopped being stubborn and called, they said they weren’t sure what was wrong so they were sending an ambulance just in case, but I wasn’t a priority so they would be there in a couple of hours.’

Two hours later, still waiting on the ambulance, Luna tried to go to the bathroom again but was again overcome with dizziness.

She fell backwards, hitting her head on the kitchen floor. Realising she was getting worse, her flatmates called the ambulance again.

Eventually, paramedics arrived. Luna had come round and they thought she was ok but agreed to take her to A&E to be checked over.

She says: ‘My flatmate Louie came with me in the ambulance and all the while I was having TIA’s but the paramedics didn’t notice.

‘As soon as we get to the hospital they put us in A & E for four hours. After all of that time, the doctor finally came out and said my name.

‘As if that’s the trigger, I felt the entire left side of my body drain away through my feet, then I was gone and fell on the floor, freshly paralysed.

‘The doctor looked at my friend and said “When she’s finished doing what she’s doing, pick her up, put her in a chair and wheel her into my room.”’

Luna says she was sent back to A&E for another two hours because doctors thought she was drunk.

Eventually she was sent for a CT scan and doctors realised that she had actually had a series of stroke, with the biggest one happening in hospital.

‘The next thing I remember is I was in a bed with paper trousers on and a nurse came in to tell me I’d had a severe stroke,’ Luna says.

‘I didn’t believe it at all. I was told all day that I was way too young and I couldn’t understand why I was there.

‘I wasn’t a pensioner. Were they sure? Being half paralysed and having all of your independence taken away from you is soul destroying.’

Throughout the day, Luna had had a total of seven strokes. It left her brain damaged and she spent months recovering.

Now, over a year on, Luna’s life is still impacted by what happened.

She says: ‘20% of my brain is now dead, so that comes with a lot of challenges.

‘I am still half numb so I can’t feel any of my left side, which is hard as I am left handed so I can’t really hold a pen or fork very well.

‘I am on medication for life. I have to take blood thinners every day to prevent more strokes. I am not organised so I forget a lot.

‘A really common thing after having a stroke is major fatigue.

‘I have cognitive issues so I can’t really translate the noises people say into words very well and I find my brain giving me words I didn’t want to say when I speak.

‘On a bad day I stutter a lot and I can’t understand people. I have to sacrifice a day to have a day.’

Luna took six months off university but is now focusing on trying to finish her degree.

She adds: ‘I hate to say it but I cope because I don’t really have a choice. This is me now and I just have to accept it.

‘I worked incredibly hard to be able to walk again and move my arm and fingers in a way that looks naturally animated.

‘If you didn’t know I had a stroke you wouldn’t know, unless I’m forgetting that I’m holding a cup in my numb hand and dropping it everywhere.’

Luna is working with the Stroke Association as part of their Rebuilding Lives campaign, which advocates that, with the right support, stroke survivors can make the best possible recovery.

She wants to talk about the symptoms to help people understand that anyone can have a stroke.

How to get involved with You Don’t Look Sick

You Don’t Look Sick is’s weekly series that discusses invisible illness and disabilities.

If you have an invisible illness or disability and fancy taking part, please email [email protected]

You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.

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