A TikTok star claims her life is mimicking rom-com ’50 First Dates’ thanks to a rare disease that causes her to repeatedly forget about her own partner – who has to keep a journal to remind her of their relationship .
Megan Jackson says that if she becomes too happy after developing a functional neurological disorder (FND) five years ago, she suffers from memory-clearing seizures.
The awful condition affects every aspect of 21 year olds’ lives which means even their favorite sitcoms must be banned as too much laughter can trigger the condition.
The unemployed vlogger also cannot receive any surprising messages as it can lead to severe memory lapses – which means that a future marriage proposal could also be an option.
Her personable partner Tara Sorkin, 22, even had to write a diary for Megan and show her pictures or play her favorite songs to improve her memory.
Many of Megan’s happiest moments in life were ruined by the illness – even simple joys like the excitement of winning a bet on the Grand National caused a mistake and she forgot she had even won.
Megan’s got one now GoFundMe page Hoping that friendly strangers will donate for a specialist to put an end to her daily struggles, she faces a long waiting list to see an NHS neurologist.
Megan of Leeds, West Yorkshire said, “It’s so depressing. I have seizures almost every day.
“I just have to laugh and then I have a seizure. It affects every part of my life.
“I can cope with the seizures because I really have no idea what will happen when they happen, but it’s the memory loss [too].
“Sometimes I forget who my girlfriend is and that’s terrifying. Sometimes I forget family members. It’s like my memory is falling apart.
“The strangest thing is that I can wake up and forget that I like certain foods. Then I’ll buy something the next day and wonder why I bought it – I don’t like that?”
“The worst thing is when I wake up from a seizure and have no feeling in my legs.
“I can be stuck like this for days and I have to cry in a cup or throw myself off the bed and use the bathroom.
“It’s so sad that at 21 I have to make myself miserable – but not too miserable – so I don’t have a seizure.”
By the time she turned 17, Megan was taken to A&E by mom Sanchia Jackson, 45, for months after suffering up to 35 seizures a day – some leaving her completely unable to walk or speak.
After a referral to a neurologist, Megan was diagnosed with FND and offered cognitive behavioral therapy (CBT), but soon realized it had to fail as she forgot the session.
Megan said, “The [seizures] were so scary. They explained that it was like a computer with too many windows open and when you open another window it just crashes. That’s why my body is having a seizure. This is how it deals with stress.
“They told me I had to be on a waiting list to have CBT. I finally got my appointment for it, but I was only seen once.
“Every time I had a seizure that happened every day, my memory would restart so that I forgot the appointment I was about to have.
“I haven’t had any help since then and that was five years ago. I stayed in the starting blocks for so long.”
A devastating reality for Megan is that her relationships are badly affected by her condition – which means that her first friend Tara can never buy her big presents or surprise her for fear of triggering an episode.
After discussing their future together, Megan imagines that a marriage proposal would cause her to be “like a light” – meaning that someone else could cause memory loss.
Megan said, “Part of my illness is likely due to being not myself. I’ve only recently come out lesbian since meeting my current girlfriend.
“When I met her, my seizures were much worse because I knew I had to tell my family. Otherwise it would only come out in my seizures.
“We were only together for a few months and we went through way too much. We shouldn’t have gone through this trauma and I forgot about it at least four times.
“She’s really good at it. She keeps diaries for me every day and keeps them in my notebook on my phone.
“It’s like first 50 appointments. Everyone relates to it that way.
“She puts on our songs to improve my memory, but it depends on how I react to it.
“Sometimes when I come over and someone says, ‘this is your girlfriend, Tara,’ I’ll say, ‘what the hell – I’m not even gay’. I think nobody knows [my sexuality] because i forgot.
“It’s so traumatic for all of us, especially when it’s someone who is so close to you and with whom you spend so much time.
“Even if she shows me pictures, it doesn’t mean anything because I have absolutely no feelings for the person there. It’s so sad.
“I worry about life events as suggested.
“We were talking about our wedding day the other day. If she made me a suggestion, you’d have to see it on camera because I’d be like a light. You can’t casually bring marriage into the conversation.”
On several other occasions, Megan’s feelings have caused seizures, which means that some of the most joyful times in her life have been ruined by her seizures.
After these exhausting episodes, Megan sometimes develops tics or speech disorders. On other occasions she has lost her voice completely.
Megan said, “Heightened emotions cause me to have these seizures.
“Sometimes it barely looks like I’m having a seizure, but for some reason my hand has stopped working. [or] I’ll have blurred speech or stutter.
“Whenever I’m stressed it comes out in a strange way. If you try to suppress it, it gets worse, so you have to drive it out.”
“There are certain programs that I can’t watch because they’re too funny or too sad.
“There’s a program called This Country. Every episode makes me laugh so much that it can throw me into a fit. The whole family knows not to wear it when they’re around me.
“When I was 18 I put some money on the Grand National one time and my horse came in. I was so excited that I was going to win that I passed out.
“When I woke up my mother said, ‘Megan, do you remember you just won some money for the Grand National?’ Little did I know it was still that day, then I checked and won some money so I passed out again.
“It’s like a vicious circle. I can’t be surprised or anything.
“Loud noises and fire alarms are really dangerous. Fire alarms have triggered me, then I’m out and can’t get out the door fast enough.
“I could wake up anywhere without [working] Legs. I can never go out alone. “
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Last summer, Megan had to leave a job after having a particularly bad fit.
But weeks later she tried to wash her work clothes, forgetting that she was no longer busy.
Megan said, “I can’t work. I’ve been laid off from so many jobs.
“”[Even a few weeks after losing one job]I had a very bad fit that made me lose a lot of my memory.
“I woke up, got all of my work supplies. I washed all of my work clothes and said to Deanna, ‘I have to get my laundry because I have to dry it before tomorrow.’
“She said ‘Megan, what do you mean?’ I said, ‘Well, I’ve got work at 8:15 am’.
“She burst into tears. She said ‘Megan, you don’t work there anymore. You don’t have a job anymore’.
“That was the worst thing. If I hadn’t had anyone there, I would have gone to work.
“I can’t hold a job or get any benefits because it takes the government forever to decide whether or not you can have it.”
With the launch of her TikTok, which now has more than 280,000 followers, Megan has committed to helping others with invisible disabilities – FND in particular.
She has already raised more than £ 1,500 after launching her GoFundMe page, mostly from her loyal followers, but this is just a drop in the ocean on the financial pressures of private health care.
Megan 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 think I’m a normal 21 year old girl who goes out, sees her friends, goes on vacation when in reality I’m extremely disabled and don’t get as many things to do as I would like.
“I cannot drive, I cannot go anywhere alone, I cannot bathe without being watched.
- FND is a problem with how the nervous system works and the way the brain receives signals
- The condition is classified as a rare disease, although it is the second most common reason for a neurological outpatient visit after headaches / migraines
- Symptoms can include seizures, numbness, tics, language problems, insomnia, chronic pain, and headache
- The most common treatment for FND is cognitive behavioral therapy, although it only has a 13 percent success rate
Info from https://fndhope.org/fnd-guide
“I wanted to make more people aware of hidden disabilities. I want to be a voice for others who are going through who I am. It gave me a purpose.
“I want to share my journey with people on TikTok who are donating.
“The neurologist appointment is £ 300 and the MRI cost is £ 500. The likelihood that I will need therapy is CBT.
“I either have to go to an inpatient unit where I can get all kinds of therapies at the same time, or I have to go once a week. If I do this privately, it will cost so much money.”
You can donate on Megan’s side, Here.