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I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!

In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.

I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS  I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?

So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.

It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)

I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.

Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.) 

What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.

I have been watching a BBC4 series called Dear Diary (still available on iplayer until 25th January i think, for those of you in the UK).

I have found it very interesting. The first episode was with Richard E Grant, the second with Mariella Frostrup and there is a third and final programme this week.

I use my diary every day for organising myself but I have never written a diary in the sense of writing my deepest thoughts every day. In times of stress/emotional turmoil i have found that writing things down just for myself to be of great benefit in making sense of my emotions. Sometimes there is no-one who will listen, or who you think you can be completely open with but the exercise of expressing (literally getting it out) onto paper is still useful, even if it does not come back with a hug and reassurance!

 Of course, there is this blog – though not like a diary in terms of a private, no holds barred account of my life – of course it is a diary of sorts. I thought about the points raised in the programmes and why i write the blog, what i gain from it and what the intentions are.

One reason discussed in the first programme was loneliness. A diary is someone to talk to. In the second programme they talked about Anne Frank’s diary and how she calls it Kitty, as if she is talking to a friend.

In the second programme Mariella raises the question of self-obsession. Are people who write diaries self-obsessed? This is something i struggled with when i considered writing a blog. It is a bit arrogant/egotistical to write about your life and expect people to be interested? What were my motives? Did i have anything useful/interesting to say?

I would say that yes, in some ways you do have to be a bit self-obsessed, but as someone with a chronic illness that is all i can be. It is impossible not to be when you are stuck with yourself, and your daily concerns and “work” (it is hard work) are to do with managing your self and body, trying to cope in a private adversity that those around you are affected by but cannot directly share in. I do not think i am special, except in the sense that we all are! I see my self obsession and all the management i do of self and body not just as survival for myself but also an exercise in minimising the negative affects on those who live with me and share my life. There is a sense that our life revolves around my needs, just because I have more needs as a disabled person. This is something i struggle with, but i know i should not apologise for, as i cannot help it. I do what i can. Also, honestly, everyone is a bit self-obsessed aren’t they? If you listened to people’s thoughts rolling through their heads i think most would appear that way at least some of the time.

As for blogging about my life with illness, I think there is a community and a sharing of experience that makes blogging not self-obsessed. Sometimes it really helps to read what others are going through to snap us out of a moment of self pity! It also helps with the loneliness of feeling outside of mainstream society.

I also think that blogging about living with chronic illness is not just saying “here, listen to my marvellous brain talking to itself” or “see how hideous my life is, i am in pain, pity me”; it is giving a voice to our lives and experience. We may not feel that we have this space anywhere else. Our lives seem invisible in the context of wider community. Our experience is misunderstood. For me it is also about reaching out and connecting with others that i cannot do in person. Being among others who share our experience, at least in part.

I would go further and say that this blog is a chance for me to document the truth as far as i can make sense of it: my experience of my own body and illness. I feel that i am constantly being monitored, being judged, graded and assessed by the medical profession and by benefits-related people and processes. I have to interpret my life and symptoms to fit the criteria deemed as acceptable, squeeze myself into the little boxes and simplify the truth. Things are being written about me on a regular basis! Letters fly from one department to another stating various “facts”. I also feel judged by people i meet in everyday life. “You look so well”. Hmm.

The second programme also talks about diaries written by people fighting in wars and those in concentration camps. The urge to write down and document their experience so strong that people have written on anything that was to hand, to make something that might outlive them, making a claim to existence, saying “i was here”; to not be forgotten in the face of death. It is bearing witness to what they have suffered, and documenting events that should be known.  It is a testimonial and giving value to each life. Each voice. When our personal experience becomes political maybe this urge is even stronger.

I think it is human nature to make a mark, to change something to show we were there, that we exist. We carve our names in benches and desks, we write graffiti. I would love to be published, and i think many people who have been feel a sense of having left something to be remembered by. Proof of existence. Maybe when faced with our mortality we cannot help having these urges. Chronic illness may fit into this category. Our relationship with our bodies changes and we perhaps see life differently. I feel there is a sense that it is political as well as personal, and that also drives me to document my struggles. I am here.

The extension of asserting our existence is being understood. As Mariella says in the second programme, as good diary can take the minutiae of life and make it universal; make it meaningful to others. That sounds very compelling to me and i have the urge to read some diaries! (Published ones of course…) Does anyone know of any good ones to recommend?

ME/CFS Awareness

ME/CFS Awareness


December 2020