Living the line between lover and carer

When Jessica Bean’s lover and partner became her carer, it nearly broke her relationship. But the young couple has refused to allow a battle with cystic fibrosis to tear them apart.

I don't really remember the exact point that Cameron became my carer.

It was somewhere between being told at 21 years old that I would need a double lung transplant, and uprooting our lives to move interstate in pursuit of specialist care.

It certainly wasn't the plan I had for my life. Despite being born with the genetic condition cystic fibrosis, I had always been career driven, ambitious, and running a million miles an hour. I had long-term plans built upon weekly to-do lists, and I prided myself on being busy and independent.

When we started dating in high school, Cameron unexpectedly became part of the plan, though never in a million years did I see him becoming my carer (or me becoming so sick that I would need to depend on him).

It began with Cameron taking on extra duties at home and occasionally missing work to come to my medical appointments. However, as my health rapidly declined, he had to increasingly juggle work and study with my growing demands.

When Cameron officially became my carer, it was a relief to be able to focus on my health and to have someone there to support me through the tough stuff. Coping became so much easier when I had someone to make me a cup of tea through treatments. He held my hand when I received results that weren't positive, reassured me when physical pain or the complexity of breathing became overwhelming, and took control of the household duties.

Initially, we were still very much in 'lover’s mode'. While our days were dedicated to my health, mostly it felt like an opportunity to spend lots of time together.

Man and woman hugging
Above: Jessica and her husband Cameron.

Slowly, that began to change.

Cameron saw me in ways nobody ever wants to be seen by others, let alone the man they love. The inhibitions of young women in relationships—being seen without make-up or with unshaven legs—became laughable in comparison.

On the bad days, I would cough so hard I would vomit repeatedly, often not making it to the bathroom in time. Or I would find myself gasping for breath and in need of rescuing from the bottom of the shower.

The things that Cameron had once done as the little extras became expectations. I needed him, and while I was immensely grateful, I was tormented by the feeling that it made me less of a partner, less of the wife I imagined I would be.

I became frustrated that our lives weren’t like before, frustrated that our budget was impossibly tight, frustrated that my body couldn’t do what I wanted it to do, frustrated it was all my fault, frustrated that I had become a sick person.

In turn, I took that frustration out on Cameron. Fighting over things to do with my health became us fighting as a couple. On many occasions, it nearly broke us.

In retrospect (a place I know I am lucky to be standing), we could have done things differently. But in the stress and chaos of our lives, I realise that this is easier said than done. Both caring and being cared for are tough gigs, and it’s important that we recognise that.

However, if there was something I wish I had heard more often (or rather, allowed myself to hear), it would be, ‘You are not a burden’. 

I did nothing to cause the situation we were in. My dependence on his support in no way determined my worthiness to be his wife. While it was not a life either of us would have chosen, making my life easier was something he wanted to do.

And beneath the daily to-do list, one thing always remained: The fact that my lover was also my carer didn’t make ours any less of a love story.
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