My name is Leah and my husband Andrew was diagnosed with Follicular Lymphoma in 2021, in his mid-20’s. It hit us both really hard. Since then, I’ve learned how to support him in the best way I can, while also managing my own emotional health because being the person caring for someone you love comes with its own emotional weight.
When Andrew was first diagnosed, we were both really struggling to cope. I was focused on supporting him physically through treatment and mentally through the hardest moments, but I was quietly leaving my own emotions to deal with later. I felt like he had to be the priority, he was the one going through it. But that quickly caught up with both of us. I started to burn out, and I realised I needed to step back, build my own support network and find my own ways of coping, so I could show up as my best self for Andrew.
Being a caregiver can sometimes feel like a double whammy. You’re carrying all the anxiety, stress and fear of the unknown yourself, while also needing to be there for the patient and everything they’re going through. You can feel so helpless, and you want to be everything for the person you love. But it is so important to remember that looking after your own emotional health isn’t selfish. In fact, to be the best for them, you need to be OK in yourself too.
One of the first things I learned was that I needed my own separate support system, people who would ask how are you, Leah? rather than conversations that immediately turned to Andrew’s treatment and progress. Both were important, but I needed space to acknowledge and address what I was feeling too. Whether that’s one or two trusted people, or even journaling, having somewhere to process your own emotions really matters. The more it gets swept under the carpet, the more it creeps back up on you.
I’d also encourage caregivers to have open, honest conversations with the person they’re caring for about what you each need. For Andrew and me, we found our own rhythm. I took on a lot of the research looking into treatments, joining the Facebook support group, being involved in conversations with consultants, because Andrew wanted to focus his energy on his physical health. Taking on that role gave me a sense of purpose at a time when I felt helpless, and it took a load off Andrew at the same time. Over time, we shifted those roles as our needs changed.
It’s not an instant thing, and it looks different for everyone. But if there are any caregivers reading this: it is OK to look after yourself. You deserve support too.
Hear more from Leah in our webinar, FL and You – Emotional Health and Wellbeing, which focuses on nurturing emotional wellbeing, building strong support systems, and embracing a positive outlook on living with FL.
