A TikToker’s life is eerily similar to the rom-com ’50 First Dates’.
Megan Jackson has a rare condition that causes memory-wiping seizures that make her forget her own partner.
The 21-year-old, who developed functional neurological disorder [FND] five years ago, even has to keep a diary to remember details about her other half.
Sympathetic Tara Sorkin, 22, plays music to jog Megan’s memory.
But she has to be careful triggering the condition as Megan experiences memory loss when she gets too excited, is surprised, laughs too much or hears a loud noise.
This happened once when she watched her horse win the Grand National, which makes the couple worry a marriage proposal may have to be off the cards in the future.
Megan, from Leeds, West Yorkshire, says her life has changed dramatically since she was diagnosed with FND aged 17.
When she developed the disorder, she was rushed to hospital by mum Sanchia Jackson, 45, after suffering up to 35 seizures a day that would make it difficult for her to walk and talk.
Megan said: “It’s so depressing. I have seizures pretty much every day.
“I only need to laugh then I have a fit. It affects every part of my life.
“I can cope with the seizures because I really don’t have a clue what’s going on when they’re happening, but it’s the memory loss [too].”
Megan continued: “Sometimes I forget who my girlfriend is and that’s terrifying. Sometimes I forget family members. It’s like my memory lapses.
“The most bizarre thing is I can wake up and forget I like certain foods. I’ll buy something then the next day think ‘why did I buy this – I don’t like that?’.
“The worst part is when I wake up from a seizure and have no feeling in my legs.
“I can be stuck like that for days and I have to wee in a cup or throw myself off the bed and take myself to the toilet.
“It’s so sad that at 21, I have to make myself miserable – but not too miserable – so I don’t have a fit.”
Another devastating reality for Megan is her relationships are heavily impacted by her condition.
Her first girlfriend Tara is unable buy her big presents or surprise her for fear of triggering an episode – but she is very supportive.
Megan said: “Part of my illness has probably stemmed from not being myself. I only recently came out as a lesbian since meeting my current girlfriend.
“When I met her, my fits were way worse because I knew I had to tell my family. It would just come out in my fits otherwise.
“We’ve only been together a few months and we’ve been through way too much. We shouldn’t have been through this amount of trauma and I’ve forgotten her at least four times.”
Megan added: “She’s really good with it. She writes diaries to me every day and keeps them in my notebook on my phone.
“It’s like 50 First Dates. Everyone refers to it like that.
“She puts our songs on to try and jog my memory, but it depends how I react to it.
“Sometimes if I come round and someone says ‘this is your girlfriend, Tara’, I’ll be like ‘what the hell – I’m not even gay’. I think no one knows [my sexuality] because I’ve forgotten.
“It’s so traumatic for all of us, especially when it’s someone so close to you who you spend so much time with.”
She continued: “Even if she shows me pictures, it means nothing because I’ve got no feelings there for the person at all. It’s so sad.
“I worry about life events such as being proposed to.
“We were talking about our wedding day the other day. If she proposed to me, you’d have to get it on camera because I’d be out like a light. You can’t casually bring getting married into conversation.”
Some of the most joyful times in Megan’s life have triggered fits.
And after these debilitating seizures, she’s had to overcome side-effects like slurred speech or losing her voice completely.
Megan’s disorder has impacted her career prospects and she was forced to leave a role last summer after a severe seizure.
She said: “I can’t work. I’ve been let go by so many jobs.
“[Even a few weeks after losing one job], I had a really bad fit where I lost a lot of my memory.
“I woke up, went and got all my work stuff. I washed all my work clothes and I said to Deanna, ‘I’ve got to go get my washing because I’ve got to dry it before tomorrow’.
“She said ‘Megan, what do you mean?’ I said ‘Well, I’ve got work at 08.15am’.
“She burst into tears. She said ‘Megan, you don’t work there anymore. You don’t have a job anymore’.”
While Megan doesn’t have a job at the moment, she’s spent her time launching a TikTok channel where she helps others with invisible disabilities.
She has more than 280,000 followers who have helped her to fund £1,500 to go towards her private healthcare.
The TikToker said: “The reason I set up my TikTok account was because this generation is so influenced by social media.
“When you look at my Instagram, you’d think I’m a regular 21-year-old girl who goes out, sees her friends, goes on holiday, when in reality, I’m extremely disabled and I don’t get to do as many things as I’d like to.
“I can’t drive, I can’t go anywhere on my own, I can’t bath without being watched.
“I wanted to make more people aware of hidden disabilities. I want to be a voice for others going through what I am. It gave me a purpose.”
Megan added: “I want to share my journey with people on TikTok as they are donating.
“The neurologist appointment will be around £300, then MRIs are £500. The likelihood is the therapy I need is CBT.
“I either need to go to an in-patient unit where I can get all the different types of therapy at once, or I’ll need to go once a week. If I do that privately it’s going to cost so much money.”
You can donate to Megan’s page here.