When the cared for becomes the carer.
By Selan Lee from the United Kingdom
I’m not the biggest believer in Astrology. I might complete an occasional zodiac quiz or look up my horoscope when life seems complicated - but I’m not one to base my whole personality around my status as an Aries. However, in light of recent events - I’ve become a bit more of a believer.
At the start of 2024, I made my annual Google search on the predictions for the Lunar New Year. What started as a little harmless fun quickly turned depressing. My fortunes for 2024 looked bleak as a dragon zodiac, and now I can see the start of my 2024 misfortune. Coincidentally, my mum began experiencing balance and coordination issues at the same time as my feeble attempt to predict the future. Following visits to the GP and A&E, a transfer to a ward and surgery - Mum has been relieved of the meningioma that started it all. I realised our roles had been reversed for the first time on Mother’s Day. I, who had been cared for as a daughter and a daughter with Crohn’s disease, had become the carer and guardian of a mother who’d been caring from the moment she found out about me.
Only now that she is home, with the benefit of retrospect, I realise I had a small glimpse into a carer’s experience. Many of us with chronic illness gripe that often, and quite rightly, our experience is never fully understood or communicable. But the trauma and sacrifice of carers is something even less understood. My mum would never call herself a hero or a loyal supporter, as many news headlines and commenters like to attribute to partners, loved ones and friends of chronically ill people. It is a title that never sits well with her and similarly with me following the last few months.
I sat next to her at every medical appointment. I anxiously walked the hospital corridors during her surgery. I memorised every detail of the conversations with the nurses. I visited her every day and filled in every piece of paperwork. Just like she did these last 6 years.
The roles had thoroughly been reversed, and not once did I feel heroic - I felt helpless, even more than I did when I was freshly diagnosed.
With the advantage of improved research and awareness, more and more people are aware of the intersectional and complex identities of people with chronic illness, as exemplified by the IBD Disk (Ghosh et al., 2017). However, this level of understanding and empathy has yet to be mirrored in the perception of carers. They are still a monolith of loyal, self-sacrificing heroes - not deeply traumatised, frequently tired and overwhelmed soldiers.
I am fortunate to have someone and a support network to rely on to come with me to hospital appointments or to talk to when being sick becomes a little too tough. I am acutely aware they are one of the reasons I’ve been resilient with my IBD (Keefer, 2018). Their endless care, kindness, and generosity are never lost on us, but as Atticus Finch said, “You never really understand a person until you consider things from his point of view...until you climb into his skin and walk around in it.” The experience of chronic illness can never be fully understood, but so is that of the carer. Some will be lucky to encounter this responsibility later in life. Still, one thing is for sure - it is one that no one is ever truly prepared for, and though it shouldn't be lauded to a pedestal which diminishes the status of the chronically ill person - it definitely is one that I believe deserves the same comprehensive appreciation.
Featured photo by Matthias Zomer from Pexels.
References
1. Ghosh, S., Louis, E., Beaugerie, L., Bossuyt, P., Bouguen, G., Bourreille, A., Ferrante, M., Franchimont, D., Frost, K., Hebuterne, X., Marshall, J. K., OʼShea, C., Rosenfeld, G., Williams, C., & Peyrin-Biroulet, L. (2017). Development of the IBD Disk: A Visual Self-administered Tool for Assessing Disability in Inflammatory Bowel Diseases. Inflammatory bowel diseases, 23(3), 333–340. https://doi.org/10.1097/MIB.0000000000001033
2. Keefer, L. (2018). Behavioural medicine and gastrointestinal disorders: the promise of positive psychology. Nature Reviews Gastroenterology & Hepatology, 15(6), 378–386. https://doi.org/10.1038/s41575-018-0001-1