Welcome to You Don’t Look Sick, our weekly series about living with an invisible illness.
Those with a condition that can’t be seen often face judgement because people don’t understand they are ill when they look at them.
Kelly Boyson, 32, from Wokingham, Berkshire, has Ménière’s disease.
Ménière’s is a condition affecting the inner ear that causes sudden attacks of severe vertigo, tinnitus, pressure in the inner ear and hearing loss.
She was diagnosed in March 2015 but had been experiencing symptoms for four months beforehand.
She explains: ‘I remember sitting at my computer at work and everything started spinning. I went to the GP various times trying to figure out what was going on. I was told I had labyrinthitis then ear infections.’
Kelly experienced more dizzy spells and kept going back to her doctor, who eventually suggested she could have Ménière’s.
She was referred to a specialist Ear, Nose and Throat Doctor for more tests.
After discussing her symptoms and checking for hearing loss, Kelly was told she had the condition, which affects around one in 1,000 people in the UK.
Although frightened about what life with a hidden illness would mean, Kelly was relieved to have a name for what was wrong.
There is no cure or specific treatment for Ménière’s but people with the illness are given a range of medication to control the symptoms.
Kelly was given betahistine tablets and steroid injections but unfortunately, they did not help and she continued to have sudden attacks.
She also had drop attacks, where she would suddenly drop to the floor and would be unable to get up.
Everyone with the condition is different, with some people experiencing shorter attacks and some only having them very infrequently.
Unfortunately, Kelly’s attacks happened a few times a week and would last for up to four hours a time.
She gets a few minutes warning where she starts to lose pressure in her ear and then severe tinnitus starts, followed closely by vertigo and nausea that makes her lose control of her body.
Because she was often dizzy and unable to stand, people would think that she has been drinking.
She explains: ‘I was at a nightclub once and had a drop attack on the dance floor.
‘My friend called the bouncers to get help but they started carrying me out ready to chuck me out like they do with drunk people.
‘My friend was trying to explain that I had an illness and that I don’t even drink.
‘Another time I was on the underground and had a drop attack. The staff were brilliant but when they called the ambulance to come and get me, they were told I wasn’t a priority due to the fact it passes and I just had to lie there on the platform.
‘I completely understand – there are worse illnesses that are life-threatening – but at the time I felt I was a priority due to what was happening to me (I know that probably sounds so selfish!).
‘Eventually, a transport officer managed to get me into a taxi and took me to hospital.’
The attacks started happening so frequently it was dangerous for her to go out by herself and she became effectively housebound for 18 months. She also had to give up her job working in recruitment.
Kelly struggled with feeling isolated and depressed during that time, as she couldn’t go out and see anyone.
Now, Kelly’s condition is more controlled and she works as a fundraiser for charity the Ménière’s Society three days a week.
She set up her blog Balancing Life with Ménière’s to raise awareness and to find other people with her condition.
She also spent the time having her first colouring book Travels in Colour published.
Kelly was supported by the Ménière’s Society, the only UK charity dedicated to vestibular (inner ear) conditions.
‘They have been there from the beginning. I don’t know what I would have done without them,’ she says.
Kelly’s attacks are now more under control and she now works three days a week for the charity.
She still has attacks and some days she is unable to move from bed but tries to get on with life as much as she can.
She explains: ‘It doesn’t affect me every day, but sometimes I leave the house off balance, with bad headaches that turn into migraines. I feel nauseous when I get up and know that my day could end badly but I still go out because I don’t want to miss out.
What are the symptoms of Ménière’s disease?
‘I’ve been at work being sick in the toilets for hours. I’ve been stuck on the underground for hours with the world spinning around me. I’ve sat in a pub with friends not being able to see clearly as everything is spinning.
‘I can feel fine in the morning and have a drop attack where the vertigo comes out of nowhere and I fall straight to the floor.
‘On a bad day, from the offset, I know it’s a bad idea to do anything. I wake up dizzy and I can spend the day in bed – the world is spinning around, I have migraines and I end up being sick. I can’t get out of bed. This can sometimes last a few days.’
Despite the impact the condition has, Kelly says people don’t always understand that it will affect her for the rest of her life.
She explains: ‘People don’t understand if I need to sit down on public transport because I don’t look ill.
‘People say things like “you don’t look sick” or “are you better yet?”, like I have a cold.
‘You have to laugh it off. It used to affect me more at the beginning, now I just see it as they don’t understand.
‘I think people with invisible illnesses can use this opportunity to educate and explain why they don’t look sick.’
Kelly is speaking out during Balance Awareness Week 2019, which runs from today until Saturday.
She says: ‘I think people need to be educated that not all illnesses are visible. The person next to you could be smiling and seem really happy but you don’t know what’s going on behind that smile.’
For more information and support for Ménière’s/vestibular disorders, visit the Ménière’s Society website.
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’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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