As with most of my favourite books, Unseen found me, rather than the other way around. A few months ago I was searching the app of my local radio station for ‘Crohn’s’ hoping to come across interviews that would help me understand more about this disease as I go through my own process of diagnosis. An interview with Jacinta Parsons appeared and I immediately listened, captivated for an hour. Obviously the interview was to promote the book, but at the time I didn’t pay much attention to that (my reading took such a nose-dive in the second half of 2020, I thought my beloved hobby would never come back up for air!) It wasn’t until a friend texted me, ‘Read this?’ with a photo of a review that I was spurred into action and straight away made a request from the library.
There’s nothing like a good book to get you reading again, and after sitting down yesterday morning to start this one, I’ve devoured it in two sittings. The first five or so chapters had me in tears, with recognition that can only come from a shared, lived experience. Although there are significant differences in the details of our illness and symptoms, there are so many similarities – the first stages of feeling unwell; the emotions; learning to navigate the health system; the way being sick affects relationships with friends, family, work and life. Each stage is so well described that I think the book serves the sick and the well equally – the former to feel seen, and the latter to open their eyes and hearts to a state they will hopefully never experience. Here’s an example:
Before we have a name for our illness, before a diagnosis is made, we are made to feel shame because people might think we’re faking it. Or making too much of it. Or it is our fault. There is a deep societal suspicion of ill people, codified in ‘helpful’ remarks: ‘Should you change your diet?’ ‘Have you tried acupuncture?’ It is made clear to us through these covert comments that illness can be fixed and it’s our responsibility to fix it. If we don’t, if we are not seen to be working hard enough, or we complain too much, the world very quickly tires and points the finger of responsibility back at us: ‘So, what are you doing about it?’
Parsons is a lot further along in living with this disease, having been diagnosed around 20 years ago, so from about Chapter 6 onwards I did not personally identify as much with the writing, but was still just as affected by reading it. The rest of the book lays out the details of trial and error treatments, surgeries, becoming isolated from the world, struggling to accept the inevitable identity shift that comes with a sudden and brutal life change, and eventually some light at the end of the tunnel. You can’t help but feel sorrow and joy alongside the author as she bravely shares some of the most intimate aspects of her life. I’ll admit there were more ‘leaky eyes’ during this part of the book, this time fuelled by compassion rather than self-pity.
While the author is quick to point out that the progression of illness is not linear – for most people don’t just get sick, get diagnosed, find a treatment, and live happily ever after – the book is organised in a very logical way and each chapter follows seamlessly from the one before it. The writing is clear and concise, yet there is a lot of heart. The intertwining of personal account, facts and data, and the voices of other people with illness or disability as well as those in the medical field helps to maintain the reader’s interest and gives depth to the author’s story.
Advocacy for people with illness and disability is part of the reason this book was written, and I hope to see more and more books like this, to build understanding and compassion, to shift some outdated societal norms, and to make the world better for everyone.