“My faith helps me a lot,” says Fathiya. She was diagnosed with generalised epilepsy 18 years ago. She has tonic-clonic and atonic seizures, and they aren’t controlled.
Fathiya has osteoporosis from her previous medication and has ended up with a multitude of injuries as a result of her seizures.
“When you have a tonic-clonic seizure [and osteoporosis], you end up breaking your back, your face, your leg, an arm.
“I’ve broken about nine places in my back and eight places in my jaw and in my chin next to my ears.”
Fathiya’s past injuries mean that she is often in pain – especially when the weather is cold. And she adds that pain is a seizure trigger for her.
On top of this, other previous medications have had other difficult side effects for her, including bringing on mental health struggles. But Fathiya says her spirituality really has been a source of support.
She explains: “I’m Muslim. I grew up in Somalia, but I came here to the UK when I was young.
“My faith helps me a lot with my epilepsy. There was a time when I was on Keppra (levetiracetam) and I would sometimes get dark thoughts.
“But sometimes you can sit down when you are overwhelmed. And we have this kind of beat, you just kind of meditate. So, faith really helps.”
Fathiya is now taking Briviact (brivaracetam), and while she is still not seizure free, she finds it is helping and she isn’t getting the severe side effects of previous medications.
Her religion has also helped Fathiya to accept her condition, seeing it as a lesson in patience through hardship. She says: “I think ‘God gave you this epilepsy and you need to deal with it.’”
Fasting and worshipping God
With the start of Ramadan fast approaching, people are preparing to fast over the month. Fasting during Ramadan represents one of the five pillars of Islam, alongside faith, prayer, charity and pilgrimage.
However, some Muslims are exempt from fasting, including children, women who are pregnant, breastfeeding or menstruating, those who are travelling, and those who are ill or whose health might be affected. Fathiya explains that her condition has affected how she has observed the holy month for the last 15 years.
“During Ramadan, you dedicate yourself to fasting and worshipping God,” she says. “As I cannot fast, instead I pay Fidya. This means I give money to someone in need, who can’t afford to eat.
“So, me, I send this back home, and I sponsor one person during Ramadan, and I pay for the iftar (the fast-breaking evening meals for Muslims during Ramadan).
“It’s good to give the person the money, then they can buy what they want. But the religion says one kilo of rice per person a day.
“I’ve already asked my sister to look for someone that needs that kind of help. It’s good if it’s someone close to you, or even your neighbour. We all have a duty to each other.
“People think Islam is a hard religion, but it’s not. It’s a very easy religion.”
Fathiya’s son, who is seven, can choose to fast, but only for half a day. At the end of Ramadan, they are planning to get together with family for a traditional celebration.
“At the end of the month, we have Eid al-Fitr. That’s when we have a big party, we buy new clothes, we go out, we pray, we give money and sweets to the kids and you go visit the family. And you really, really enjoy yourself – we all look forward to Eid.”
A light at the end of the tunnel
One thing Fathiya is passionate about is raising awareness and dispelling myths within her community. While her faith helps to keep her strong, she says there is still a lot of stigma about it within her culture.
“I’m raising awareness about that through TikTok, Instagram, YouTube – and I’m getting really good feedback.
“People are surprised that I’m talking about it and advocating for it. And I’m getting so many people, to the point where I had to form a WhatsApp group, where we meet every Thursday and we just talk.
“Otherwise, there is no one to talk to, because my community can be very closed off. So, it looks like we’re opening doors and hopefully people are going to be more open to it.”
Fathiya is aiming to shatter any beliefs that people with epilepsy are ‘possessed by the devil’ or that epilepsy is ‘contagious’.
“There is no devil inside us, it’s just nerves in your brain. It’s a neurological condition, and it’s just a condition like any other. I’m hoping to achieve that – that it will be a normal subject.
“I think people are suffering in silence. But the fact that I started this, it looks like everyone can see a light at the end of the tunnel. They’re really happy about it.
“People are even talking about me when I’m with them. ‘There’s the lady who talks about epilepsy’, because I’ve done a programme for Somali TV. A lot of people know about it and they say, ‘keep doing what you’re doing’.”
Even some 50 years ago in this country, misconceptions were much more widespread, Fathiya says, whereas now it’s a lot better understood. And Fathiya is hopeful that this will soon be the case within her community too.
She adds: “I don’t want to say in another 50 years, but hopefully in the next five…”
Fathiya recently shared what her seizures and recovery feel like for Epilepsy Action’s new video, A Place I’m Meant To Know. Hear more from her or watch the video now.