Facing a diagnosis together: “We're stronger as a pair than we are individually"

In our new series, we tell the story from both points of view: starting with Becky and Paul, who have lived through Becky’s lifechanging diagnosis of arrhythmogenic cardiomyopathy. 

Becky’s story

“It all happened when I went for a run one day in January 2017. I was breathless and I could feel my heart racing. I was hot and dizzy but I had an audition that day (Paul and I are both actors and comedians). So I went on the train, although on the way there I felt sick and thought I might pass out.

“When I got back, Paul said I had gone a funny colour. We called 111, who advised going to A&E. In hospital they found my heart rate was dangerously fast. They tried to bring it down with medication, but it didn’t work, so they used a defibrillator to shock it back to a normal rhythm. The whole thing was quite difficult to come to terms with.

“I was in hospital for 11 days and I was diagnosed with arrhythmogenic cardiomyopathy or ACM (also known as arrhythmogenic right ventricular cardiomyopathy, or ARVC). It’s a rare genetic disease of the heart muscle. In my case, I was found to be at high risk of having a cardiac arrest, so I was fitted with an ICD (an internal defibrillator). If my heart goes into a dangerous rhythm, it will shock it back to a normal rhythm.”

A different life

“One day in hospital I was reading through one of the leaflets about living with an ICD and I just burst into tears. It was describing something day to day, like household appliances that I needed to be aware of with the ICD, but I was only 34 and it dawned on me that life was going to change.

• Get tips for adjusting to life with an ICD

“I’ve stopped doing vigorous exercise because it would be too much strain on my heart. Before I got my diagnosis I had been training for a half-marathon, but now I walk and do yoga. I have found a regular yoga class and it’s perfect because it’s in a little garden, it’s calming and healing. I am in pretty good condition physically, so I am lucky.

In some ways my diagnosis has been good for us as it’s made us more health conscious

“In some ways my diagnosis has been good for us as it’s made us more health conscious.”

“When I first heard about my condition, I was worried about the limits it was going to put on our lives. But in some ways it’s been good for us because we are more conscious of our health, like going to bed at a reasonable time! I’ve slowed down, which is not a bad thing.

“Paul and I do a comedy act together, called Short and Curly. It’s quite physical, but we’ve carried on with it. When I have appointments to check my ICD, if it ever shows my heart going a bit faster it has always been when I am on stage. But they say it’s OK. Being able to carry on was crucial to me because it’s part of my identity. It’s who I am and what I love.

“My condition can be inherited, so my family had genetic tests. My mum and two sisters were clear. I’d inherited the faulty gene from my dad, although he never developed the condition.”

Starting a family

“The year I got my diagnosis Paul and I had been planning to try for a baby, but there was so much to take in that we put it off until last year. We had to think about the risk of passing on my condition, and the strain of pregnancy and birth on my heart.

“We went through a process called pre-implantation genetic testing, where they fertilise eggs through IVF and then test them for faulty genes. This method didn’t work for us: I didn’t get pregnant. So, Paul and I decided to try to get pregnant naturally. I was checked every four weeks throughout my pregnancy and that gave us both confidence.

“I went into labour at 39 weeks, and needed an emergency caesarean. The moment I looked at Dot’s face was incredible. Paul was smitten. When I was being stitched up, he was right by me and helping me to visualise the walks that we had been on together to keep me from panicking. Paul is my rock: he’s been by my side throughout my recovery.”

• Get insight on how to deal with relationships when you have a heart condition

What Becky has learned

“I have got friends that have been through some pretty hard times, with health and other challenges, and I have always been astounded by their strength. I’ve used their example, not to let my diagnosis consume me or take me over. It’s made me think, if they can get through their challenges, I can get through mine.”

If they can get through their challenges, I can get through mine

• Visit our wellbeing section for more tips on how to get through tough times

Paul’s story

“When Becky first went into hospital, I was fully expecting them to say it was something they would fix, but all of a sudden there were a lot of people in the room and they were trying everything to bring her heart rate down. I was in shock. I felt whipped along because it was out of my control. I felt emotionally exhausted, hearing lots of new words, having to learn what they meant, and then what that reality meant.

“You never think about losing a partner, but I was presented with that situation. When you come out the other side, it makes you very thankful. When you are the partner you have to tell the families – her family and my family. And so I found myself repeating what we’d been told, as if I knew what I was talking about. It brought up lots of questions about our future together: would Becky ever run again? Could we have a child?

“When she got her diagnosis, my overriding concern was how she would take it. I was proud that she seemed to take it positively. She reframed the experience, informing herself, and saying she was going to have this ICD in her chest to keep her safe.

I was proud that she seemed to take it positively. She reframed the experience

“Obviously I have concerns about when her defibrillator might go off, but her reaction took a lot off my shoulders. We’re both performers, so that’s how we work through things. She started working on a show, with other people who have heart conditions to explore what it’s like to get a diagnosis. It helped Becky reclaim it as her experience, and it helped her work out that it wasn’t the end of everything.

We’re stronger as a pair

“We’re a team. As well as being partners, we work on shows together, and this was another thing we had to work out together. In the show we are relying on one another. We have worked out how to make ourselves stronger as a pair than we are as single people. And I think that’s what fed into our recovery from Becky’s diagnosis.

“Nonetheless, I had times when I felt a bit lonely, like when Becky had to go in to get the ICD fitted and she was gone for two hours and I was just waiting in the hospital. I don’t have Becky’s condition, yet I tag along with her on the whole experience.

“There are times when I push Becky a little, for example to go on a train journey alone, or on stage for the first time after her diagnosis. It’s an attempt to keep horizons broad. You should always start with saying “yes”. You can’t stop living your life.

You should always start with saying “yes”. You can’t stop living your life

“The whole experience has made me more thankful. Becky survived, and now we have Dot. We are ridiculously in love with Dot. Becky and I have decided to pause our comedy duo show while Dot is so young. But later we definitely will do some shows where Dot will feature with us on stage.”

What Paul has learned 

“We’ve done a lot of walking together and talking as we go. Walking is a great way to give you the time and space to think about your lives, to process any anxieties and unpack how you feel about something.”

• Get tips and ideas on how to do more walking – and make it fun

Information and help

If you or your family are affected by an inherited heart or circulatory condition, our Genetic Information Service nurses can help you with your questions or concerns. Call us on 0800 456 8383 (weekdays 9am-5pm), or email [email protected]

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