Do you know someone with an invisible illness? You probably do but have no idea because they don’t look sick.
Each week, our series looks at a different person, with a different illness to show what it’s like to live with a condition that is usually hidden but still causes symptoms that are a big part of every day life.
Tom Ryan-Elliott, 28, from London, has epilepsy and aphasia.
Epilepsy is a condition that affects the brain and can cause frequent seizures, where bursts of electrical activity interrupt the way the brain works.
Aphasia affects speech and language and is caused by damage to the left side of the brain, where how we talk is controlled.
Tom was on holiday in the U.S. in 2014 when he was diagnosed, after a terrible accident that left him fighting for his life.
He explains: ‘I had been to San Francisco with a group of friends beforehand and had a brilliant time. We had done all the usual touristy things and visited Alcatraz.
‘We flew over to Las Vegas and I have no recollection of what happened.
‘I’ve seen pictures of me at a pool party when we first arrived in Las Vegas, so I know I was there.
‘Everyone gambles in Las Vegas, and apparently about 20 of us were out in a casino.
‘I was losing and got annoyed so walked out and back to my hotel. When walking out, I fell down 51 steps and cracked a large section of my skull.
‘The doctors were forced to remove that section to ensure the brain wasn’t damaged even more.
‘I spent a month in a Las Vegas hospital where they fought hard to keep me alive, only when I was stable enough could I fly back to England in a private air ambulance.’
Ryan was moved to Charing Cross hospital, then Kingston hospital and eventually to St George’s brain injury rehab unit, where he spent 22 weeks learning to walk, talk and regain all the skills he had lost because of the brain injury.
He also had an operation to replace the large section of his skull that had been missing with a titanium plate.
Since then, Tom has dealt with frequent seizures, which range from focal seizures, where he can’t speak to tonic clonic seizures, where he falls to the floor and his whole body starts jerking.
Although most days Tom looks well to the outside world, he had to come to terms with the possibility of having a seizure in public at any moment.
He says: ‘I was in Wagamama’s and had my first public seizure. It makes me feel extremely uncomfortable and people around you can’t help but stare.
‘It was a simple focal seizure so I couldn’t talk and it comes across as I could be drunk.
‘I can also have tonic clinic seizures so am lying down shaking all over. I think people around obviously look after me as I wake up in hospital but some people may panic or not want to get involved.
‘I also suffer from aphasia as well which is a word finding difficulty due to the brain injury. This can make daily tasks really hard when I know what I want to say but the words just can’t get out of my mouth. I sometimes feel like people must think I’m an idiot.’
Tom takes medication for his conditions, which helps to control them and allows him to get out and about as much as he can.
‘On a good day, I am usually out and about taking pictures around London but on a bad day, a seizure can change everything,’ he says.
‘I was looking after a Cocker Spaniel and it seemed to know I was going to have it before I did. It jumped up and started barking to almost warn people it was going to happen.
‘A few minutes after that, I had a tonic-clonic seizure in Shoreditch on a double-decker bus and everyone else was kicked off the bus (busy time at about 6pm) by the ambulance team.’
Tom admits that this can make him feel isolated, especially as he has been unable to work full-time since his diagnosis and he struggles to meet new people because of his speech difficulty.
He says: ‘My aphasia really affects my speech to others. I’ve just started to use the Meetup app to try and go out to meet other photographers more, which is good fun.
‘I have felt quite isolated at times as it’s hard to make new friends with a speech difficulty.
‘Everyday I’m just alone, not many people would think of saying this but I actually want to get back to work.
What should you do if someone has a seizure?
‘I really want to be doing something rather than just focusing on these illnesses and medications. I want to be out meeting people and making new friends so I don’t feel isolated.’
As his condition is hidden, he sometimes gets told not to use things that help, like priority seating on public transport.
He says: ‘I don’t look disabled and it’s only when speaking for a long time that there may be some slight problems with my speech for them to notice that I have aphasia.
‘It’s on the trains and tubes that older people essentially force me to move, they think because I’m young, they should have those seats.
‘I’ve got myself a bracelet to say both my epilepsy and aphasia to show them if they tell me to move.
‘I use public transport daily in London to get around and I usually only use the priority seats
when I feel I am unwell prior to a seizure.
‘I have been asked to give up my seat but because I am unable to explain quickly and don’t want to explain my condition to a total stranger I will give up my seat if I can stand and hope that the seizure is then only a small focal seizure where I don’t lose consciousness and fall and hurt myself.’
Tom is currently studying photography as well as volunteering at the RNIB and London Transport Museum and hopes to do more to get out and meet people.
He is also working with the Epilepsy Society to raise awareness of what people should do if they see someone having a seizure in public.
They are running a campaign to remember the three C’s – calm, cushion and call.
If you see someone having a seizure, you should stay calm and take control of the situation; cushion their head with something soft and call an ambulance if it lasts longer than five minutes.
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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