Everyone feels pain at some point in their lives. It’s a given from day one – scrapes in the playground, your first period, a cold – but when you’re young, you think you’re invincible.
The morning after my 28th birthday, I woke up next to my boyfriend at 8am, who was having a major seizure completely out of the blue. Nothing really prepares you for seeing someone you love go through something like that, especially when there was a chance that something awful could have happened.
That morning, when I was jolted awake, I sobbed, shouted his name and called an ambulance. I had forgotten his address in the shock so I had to search through WhatsApp to find it to tell the ambulance operator. Whilst I was doing this he wasn’t breathing properly, he had been foaming at the mouth, convulsing severely and had completely lost consciousness.
By the time the ambulance got there he didn’t know who anyone was and couldn’t speak – it was incredibly distressing to see him like that. I did everything I could in the run up to it, including trying to put him in the recovery position when he’d stopped convulsing.
I know what it feels like to lose someone you love unexpectedly – a close friend of mine died 3 days after his 18th birthday which I had to miss because I’d forgotten I said I would babysit for one of my neighbours. Even though I found cover because I was desperate to go, my neighbour said no because they trusted me with their kids. I obviously don’t blame them at all for that. But what stays with you is not being able to say goodbye or see them for the last time.
A message I value more than some of my possessions is one he sent me an hour before he died in a car crash. I had messaged him to say I was so sorry for missing it and he replied saying that I shouldn’t worry and that he was looking forward to seeing me at another friends’ birthday later that week. The last time I saw or hugged him was at Reading festival, when we were messing around and he made me laugh so much that we fell into the mud together. The next time I saw him, I was placing a goodbye letter I had written him along with a rose on his final resting place.
So, when I thought for a moment or two that day that my boyfriend might be lost, I was in shock. I got a bit of time off work to look after him and try to help him rebuild himself afterwards. Due to the severity of the seizure, he had damage to his spine, shoulder, ribs and he didn’t feel ‘normal’ for a few months afterwards. He’s still healing from the injuries over a year later now and has physio every week and a sports massage to help with pain every other week.
The hardest part for me was that in the aftermath I felt like none of my friends could really relate. No one that I was close to iin my age group understood what had happened or how bad it was. After some time and when I was able to explain, a couple of my friends and family were my rocks and were there for me. I still find now that it can be quite emotionally painful to talk or think about.
A lot of people still misunderstand seizures because it’s still a huge unknown area of medical science. Most seizures last between a few seconds and 5 minutes. Anything over this can cause serious damage. My boyfriend’s seizure lasted over that threshold.
Being in the hospital with him for four days and seeing him getting brain scans and look so poorly was hard to see. I didn’t know how to talk to people about it and I found myself wanting to play a role to keep busy. I would rush around getting him his favourite food, speaking to the doctors about trying to get his scans brought forward and distracting him with games in his hospital bed. To go from being a carefree couple in our twenties, in love and on a high, to being suddenly thrown into dealing with such a hard situation wasn’t easy for either of us.
Hearing the neurologist say that there’s a risk of sudden death connected to seizures didn’t sink in properly until a few months later when I suddenly found myself having horrible flashbacks of the incident. I couldn’t perform properly at work, I didn’t want to go out and I felt a bit disconnected and isolated from my friends because it was difficult for people to understand. It still is.
A turning point for me was a few months later, when I got into the shower after a day out with my boyfriend who had started to feel slightly better. That evening, when I was alone and in the shower I sobbed uncontrollably. The next day I had really negative thoughts and I started crying, alone on a train. When I got off, I called my mum and said that I thought I needed therapy. After hearing me, she agreed, and luckily a friend at work had a good recommendation. I realised that after my friend died suddenly, I behaved in a similar way, so I knew I needed the professional help I didn’t get as a grieving teenager.
What I hadn’t realised was that I was walking around trying to operate normally – emotionally supporting and caring for my boyfriend and his family, working in a high-pressure job, trying to keep up with my friends and be a normal 28-year-old. All along I was coping with a form of PTSD.
I feel grateful that I was lucky enough to be in a position to get access to a therapist quickly, as not everyone is. In my first session, she explained that I was still processing trauma and that although I was trying to live and operate normally, I was constantly being reminded of a traumatic event. After a traumatic event, you carry the trauma with you in your body. It can’t be helped, no matter how strong you are.
A few months after I’d stopped having therapy and flashbacks, in November last year, my boyfriend had another seizure (his third), two days before his birthday. I was just about to get to work when I heard that he’d been rushed to hospital again. I felt like I’d been knocked over emotionally and got to the hospital as quickly as I could. He cried when he saw me, because we thought we were moving on from a really tough period.
He’s been amazing and so positive. It’s brought us even closer together and made my love for him so vivid. I appreciate him even more than I did before, which I didn’t think was possible.
He’s been prescribed very strong medication to reduce the risk of having a seizure, which has really nasty side effects like personality changes, low moods and forgetfulness. We recently went to see another neurologist who specialises in seizures and he talked about the risks of sudden death again, with more detail. That was very hard for all of us. To hear that this is likely to be a long term condition that can’t be prevented or cured is in some ways slightly heartbreaking. The type of seizures and epilepsy he has means it can strike out of nowhere and have serious health ramifications, and knowing the details means I have a constant worry that I need to work on, but it will get easier with time.
I think there should be more awareness of seizures in general, given how hard it is for people who live with it, as well as their families and partners.
In case you know anyone who’s been through something similar, I’ve included a list below of things to think about:
1. Don’t try to liken your friend’s unique situation to something you have been through – just listen.
Everything impacts people differently. That’s what makes us all human. If you’re on the receiving end of this comparison and it keeps happening, try and speak to someone who you know will listen and support you rather than changing the subject to something unrelated. They’re not doing it to make you feel bad, but it’s ok if it upsets you and you don’t feel like you can rely on them. Just be honest and find at least one person who you know can help you.
2. Do meet your friend face to face.
Hug them, help them heal by being kind and try to put them first when you can. Meeting them face to face is SO important as you can’t tell if someone is really hurting or how they’re truly feeling over WhatsApp or Instagram.
3. Help them to find help.
Sometimes speaking to someone specially trained to deal with trauma or a special condition is what’s needed. You wouldn’t go to your friend if you had a broken arm to fix it. Even saying “therapy is a really positive step” can be helpful. If you’ve experienced therapy and it’s helped, make sure you “pay it forward”. If someone is in a low place, tell them they’re not alone, so they don’t think it’s so alien or intimidating.
4. Don’t think that just because a few weeks have passed they’re now ‘back to normal.’
A lot of people can assume this, and it’s probably because the other person is putting on a brave face.
5. Think of things that you know you’d appreciate if you were in your friend’s situation.
Could you plan a small dinner party or gathering when they feel up to socialising? Or take them to a nice art gallery and cafe so they can talk?
Similarly, if you’re on the flip side, take each day as it comes. There are times when you’ll feel great and times that you won’t. Take your time to process it and find coping mechanisms for any tough days. If you’re living in complete flux and being jolted from the normal to the harsh, get out of the house when you can, walk, buy yourself a hot drink. Do what you feel like, as long as it nourishes you (and no, alcohol doesn’t help). Cancel plans if you need to, but also make sure you don’t become too much of a hermit and isolate yourself from your friends just because you’re in a different situation. It’s about striking the right balance and being as kind to yourself as you can.
I also think that it’s important that your loved one with the condition has someone to lean on. Going through therapy not only helped me, but also helped my partner. I’m better equipped to speak to him about how he feels and I understand more of my own feelings because of it. Thankfully, there’s less of a stigma around mental health issues and going to therapy now than when I was a teenager. I hope it starts to impact how companies look after their staff and encourage them to ease them back in after compassionate leave.
There are still a lot of unknowns around the brain and further research could help. If you feel like you want to donate to neurological research to help understand what causes random life-changing events like seizures for people across the UK, you can support the Epilepsy Society, who work with Queens Square hospital in London.
If the above helps even just one person – I’ll be happy.