The Reciprocity of Care
by Emer Morris
I am a neurodivergent artist and carer to my mum who has Cancer. As someone who is neurodivergent, I feel a high emotional attuning to other people. However, I also get incredibly overwhelmed without some clear structures in place.
The Importance of structure
For much of my role caring for my mum, structures can be pretty straightforward. Drive from A to B at this time and date; hear from the doctor on this date, and so on. But as anyone who experiences healthcare as a patient or carer knows, when you get into a serious route of treatment, especially since the pandemic, there is often a huge amount of waiting, apprehension, and not being able to plan the next weeks or months. For me this is one of the hardest things for caregivers. For a long period in 2020 when my mum was undergoing tests and surgery, the only structure in my life was measuring the days between isolation to covid test and round again. This was the only structure I had at the time. I held onto it with my fingernails.
I operate a pretty scattered mind, particularly under stress. I’m lucky that my mum doesn't have this problem. This means she can remind me and keep me on track with regards to her care.
The emotional impact of care work is hugely ignored in the media and by society at large. As a carer it can be easier to ignore your own feelings and wellbeing in favour of the person you are caring for. This is often a survival strategy when going through a tough time. However, this can cross over into self-neglect very easily. A coping strategy that I have developed is a ‘nervous system reset’; for me jumping in cold water helps.
Carers are invisible. They are not valued - certainly not economically, and we often don’t value ourselves. I didn’t acknowledge my role as a caregiver until the pandemic magnified my responsibilities. Care work is stigmatised. It is often viewed as gendered work by those socialised as women. We need to think about care differently. My experience supporting my mum has made me passionate about challenging outdated notions of ‘service user’ and ‘service provider’ and advocating for better conditions and recognition for care workers.
The value of reciprocity
My mum's illness has taught me the importance of the reciprocity of care. Many of us love giving but find it much harder to receive. In my experience, this is very true of people with a long-term illness. Patients are increasingly forced into a passive role - that of a ‘service user’. It is often an incredibly frustrating position, without agency. For me and my mum, it is important for both of us to make sure our role as carer/patient doesn’t define us. This can be challenging in the face of institutional systems.
Over the past 20 years of her illness, my mum has worked passionately to make her voice, and the voice of other Cancer patients heard. She has always got time for other people going through diagnosis and treatment. She has become such an expert counsellor that I lovingly nicknamed the ‘Cancer Queen’. At the same time, she still supports me to make sure I’m taking care of my own health. My mum’s advocacy and how she deals with her illness has shaped how I am in the world. Recognising how to continue to receive care from her is a big part of this.