Yvette shares how greater awareness of ME/CFS within her local farming community has made a real and positive difference, and reflects on how increased recognition of caring could add to this vital support.
"Andrew was injured in a farming accident from which he never fully recovered. Following two years of tests, he was eventually diagnosed with ME/CFS – that was 13 years ago, and from that point, our life has become harder every year.
Andrew’s symptoms including chronic pain and debilitating fatigue create real challenges, making some days more challenging than others.
As the partner of someone living with ME/CFS, the role extends far beyond physical and emotional care. It involves sacrifices such as taking on extra responsibilities at home and in my case the farm, rearranging routines, and constantly adapting to unpredictable symptoms. There are also the emotional sacrifices such as putting your own needs on hold, letting go of plans, carrying the worry of watching someone you love struggle, and learning to find strength on days that feel particularly heavy. These aren’t sacrifices made out of obligation, but out of care and love.
What’s often overlooked is the impact this has on partners and carers too. There is no real time to switch off, and limited opportunity to socialise with friends, family, or colleagues. The weight of the condition extends wider than the person diagnosed, it affects the daily life of everyone who loves them.
Andrew recently participated in the Lives We Cannot Live photography exhibition that captured the realities of daily life for people with ME/CFS. When the local farming community learned that Andrew was featured in the exhibition, it sparked real curiosity about his story. Many farmers had never heard of ME/CFS, and they wanted to know more about it, the symptoms, the daily realities of the condition, and the ways it affects both Andrew and me.
Carers of loved ones with ME/CFS face challenges in all aspects of our lives, and for me, having the support of the local farming community, which is deeply rooted in our everyday life, is incredibly moving. There is a greater sense of connection - we have been acknowledged, valued and supported, which makes a big difference.
If someone sees Andrew struggling, they step in to help him on the farm — and that means a lot. We would struggle without this support and for that I am forever grateful. But it would also make a real difference if they checked in on me; even just to ask how I’m coping or to reach out and acknowledge how challenging life must be for me.
I juggle multiple roles every day – my own full-time employment, helping with the farm to reduce the burden on Andrew, and caring for Andrew. It all adds up and combined, it takes a significant toll. Living and working alongside someone with a chronic illness affects more than just the person with the diagnosis. In sharing my story, my aim is that this is recognised a little more by the local and wider community and it makes people give thought to those who are carers."
“The weight of the condition extends wider than the person diagnosed, it affects the daily life of everyone who loves them.” - Yvette
With thanks to Yvette and the ME Association for sharing this story.