Valentine’s Day: Epilepsy, partnerships and “the good in people”

With St Valentine as the patron saint of epilepsy, it would be remiss of us not to mark the occasion with some sweet and inspiring stories. Whatever juncture you find yourself in this year, we hope these stories bring you a bit of joy and a bit of encouragement. Life with epilepsy can be difficult, but three couples share how they navigate their challenges.

Crocheting roses: Andy and Nicky Tuting

Andy, 59, has never been afraid of telling people about his epilepsy. He told his wife Nicky about his condition just a few days into their relationship.

“I think if someone has a bad reaction to you telling them you have epilepsy, then they aren’t the one. After all, marriage is ‘in sickness and in health’.

“When Nicky and I started dating, we initially wanted to keep our relationship secret from her young daughter, Rebecca, as Nicky was going through a divorce and we didn’t want to upset her. This was going very smoothly until the first morning I had a seizure just before leaving. Rebecca, who was only seven at the time, had never seen a seizure before. The next day, Nicky introduced us properly. Rebecca turned to Nicky and said ‘I think he should move in with us, Mummy, so we can take care of him properly’. It still brings tears to my eyes every time I tell this story.

“Nicky has been an amazing wife and I want to thank her for taking care of me over the years and making me a better person. She would always immediately drop her work if she received a call that I was having a seizure. Luckily her bosses were understanding, so she was able to leave whenever needed.

“If I had any advice for people with epilepsy in relationships, it would be to always keep a few days’ worth of medication at a partner’s, parents’ or partner’s parents’ house. One day you’ll forget to bring them with you!”

Teddy from the claw machine: Alex and Paul

Alex, 33, and Paul, 36, have been together for almost eight years. In the beginning of their relationship, Alex says she accepted that Paul may want to leave the relationship due to the trauma of witnessing her seizures. Now, and over the last seven years, Paul has been there for her throughout her life with epilepsy.

“I told Paul about my epilepsy before we met, when we were talking online. I knew it would affect his life and wanted him to know how bad it can be.

“Even though I’m not ashamed of my epilepsy, I was scared to tell him in case he didn’t want to speak to me again. I thought he would think ‘she’s a burden’ and would no longer want to speak to me. This, of course, wasn’t the case.

“One of our favourite memories, is when I won a teddy on the claw machine – first time! I was jumping up and down like a kid and it really made him laugh.

“Paul takes time off work when I have tonic-clonic seizures. He helps me to the toilet because I can’t see or walk after a seizure. He reassures me that I’ll be okay and lets me sleep. Afterwards, he does everything whilst I recover.

“Epilepsy in relationships can be difficult at times. After he first saw me have a seizure, I told him I understood if he wanted to split up with me, as it is so traumatic for him to see and deal with.

“My memory is terrible. Sometimes, Paul will be happy about something we’ve done, and I will have no clue as to what he’s talking about. I can see in his face that he doesn’t like being able to enjoy something that I’ve completely forgotten. It’s hard.

“My advice to other couples would be to listen to each other and not be afraid to talk about it. The person with epilepsy needs support, but so does the person without epilepsy needs support as well – it is traumatic for both. But, you can have epilepsy and still have a happy, loving relationship.

“Thank you Paul, you accept me for me, just as I am, even with epilepsy. I love you.”

Diving into the unknown: Megan and Corey

Megan was nervous to tell her boyfriend Corey about her epilepsy, as, at the time, she’d only told a few close friends and family. However, from the beginning, Corey was completely accepting of Megan’s condition, and they’ve now been together for eight years. Corey has stood by Megan’s side, looking after her during seizures, being there for her during recoveries and even filming Megan’s seizures so the videos can be used to train doctors and nurses. When he found out about Megan’s epilepsy, Corey knew he had no choice but to step up for her:

“Megan told me about two months into the relationship. We were having a night in with friends and she felt comfortable to show me a video and explain what could happen to her. It made me feel upset to learn what she was going through and hear what she had faced in the first couple of years of her seizures and diagnosis. I can remember reassuring her that there was no need to be embarrassed about it anymore and around me. I was at the age in life (16) where we were transitioning into adulthood and it was time to ‘man up’ and be brave with situations like this.

“My advice for other couples would be to stick by each other, accept it’s something to deal with and do everything you can to help your partner. Go to appointments, record seizures when you can, write notes to describe the seizures, be there for your partner to talk to.

“It’s also important to not be afraid to ask for support yourself because it is hard as a partner to watch the person you love going through a traumatic time. There’s lots that you can do to help but remember you’re not an actual problem solver – you can’t just fix it. All you can do is be there.”

Megan has previously nominated Corey for an Epilepsy Star Award for the care he provides for her.

“Corey is amazing at looking after me. He always stays as calm as possible. He makes sure that I’m comfortable and will move objects from around me.

“Once he’s made sure I’m safe, Corey begins filming me during a seizures, even though it can be distressing for him. These videos help my neurology nurse to understand more about my seizures and the types they are. Some of the videos taken are of such good quality that they’ve been used by neurology doctors and nurses to train up new staff. I think this is something for Corey to be proud of.

“Over the years, I have had some seizures that have led to accidents. He has helped me to get changed afterwards, clean myself up, and reassured me that there’s nothing to be embarrassed about.

“We’re lucky that we haven’t faced too many challenges as a couple. I think this stems from us getting together at a young age so we’ve grown up and matured with it. Communication is key.

“My advice to the person with epilepsy in the relationship, would be to just be as open as possible with their partner and not be embarrassed. Tell them everything about your journey and diagnosis. When you find someone like Corey who helps so much and literally changes lives with the videos he’s taken, you realise just how much good there is in people.”