Illness is like a natural disaster. In that way, it is simple, because you have little choice but to accept it.
Through my work, I am in contact with many people living with, or caring for others with chronic illness. COVID presents an interesting situation for these people – on one hand, they are under increased pressure because regular support services have stopped or are reduced, and with that comes isolation. On the other, many have told me that now ‘everyone’ is experiencing what they live with every single day – a sense of isolation, having to plan every outing, and being fearful for their health.
Jacinta Parsons’s memoir, Unseen, chronicles her experience with chronic illness. It was published last year, in the middle of the pandemic, and she refers to the ‘groundhog day’ elements of COVID and chronic illness –
…what became apparent to me was that the virus, and the way we responded to it, replicated the experience of having a chronic illness. For me it was like muscle memory, each stage mirroring the ones I had gone through when I first became unwell. It was deja vu, but this time, the experience was being shared by the world.
Parsons covers many of the elements of chronic illness that are ‘unseen’ – the fact that diagnosis is often elusive and that it can take years before illness is managed, let alone ‘treated’; that the emotional and mental exhaustion that comes with long-term pain and illness is frequently overlooked (she desbribes how her physical pain ‘leaked through her’ until it also became mental pain); that chronic illness puts immense pressure on personal relationships –
…when you’re in your mid-twenties, you generally don’t choose a partner based on their capacity to care for you.
And that health systems are not built to care for someone over the long-term (Parsons is very clear about the fact that her socio-economic bracket gave her access to care that others would not necessarily receive).
…the health system is a mirror of the often-flawed society in which it is embedded. Issues that are found in the broader community can be found there.
Parsons keeps the factual information about the health system; time taken to get a diagnosis; and the role of gender in getting that diagnosis (there is a tendency to attribute women’s physical complaints to mental health, particularly ‘hysteria‘), very much described in the context of her own experience – it paints a rich and frustrating political picture, and it is this aspect of chronic illness that dominates Unseen.
What I most appreciated about this book was Parsons’s detailed exploration of the multi-faceted grief that goes with a medical diagnosis. In the grief-business, we call it ambiguous grief and disenfranchised grief (that’s experienced when people say things such as, “At least you don’t have cancer”). Again, the losses associated with chronic illness, and being robbed of the future you anticipated, are frequently underestimated, misunderstood or ignored completely.
I realised how profoundly I had been changed. The person I’d been before I got sick, and the person I might have become, were both gone.
The failure of my body to fix itself hurt. It produced a grief that became difficult to bear or understand…
Parsons also addresses the unique pressures her diagnosis put on family and friends, including ‘compassion fatigue’, and the tightrope she is forced to walk because “…when your status is in flux, it also means that you can’t reliably plan for anything.” Feeling ‘unreliable’ was perhaps less troubling than the shame she experienced in having to rely on others for help, noting that she was grateful for the help, but ultimately wished she didn’t need it –
You come to understand that illness is fundamentally shameful.
Shame also comes when we open ourselves up in the hope of compassion.
In some ways, there’s no ‘happy ending’ to Parsons’s story. Instead, she has adjusted to living with Crohns’ disease. The adjustment has been physical, mental and emotional. She has done some things she never thought would be possible when she was first diagnosed (and those are things that others would take for granted, such as having a fulltime job, and having a baby).
Our capacity to adjust to our experience is both our greatest strength and our greatest weakness.
What is striking and most powerful about Unseen, is Parsons’s honesty, which forces the reader to question their own application of compassion and empathy (‘victim-blaming’ is not always a clearly marked territory, but as soon as you start a sentence with “At least she….”, you can be pretty sure you’re in the zone).
4/5 Informative and insightful.