‘How To Be Sick’ by Toni Bernhard

This post was written by Megan on April 14, 2011
Posted Under: burnout and recovery,burnout and stress management

Buddhism and burnout cartoon

'How to be sick' is a wonderful title for a book – wonderfully confronting when we live in a society that is about avoiding it, denying it, moving on from it. 'Get well soon' cards say a lot. 

The idea of accepting that you are sick – right here, right now – doesn't seem to get much support. And 'How to be sick' sounds like you're setting up camp there. To some, it may sound totally defeatist.

Maybe that's why, when taking this book out to read in a cafe, I caught myself hiding the cover from passer-bys. 'What would they think of me??' I found myself thinking. Which is more than a little sad. 

The author of this book, Toni Bernhard, understands this inner turmoil well. In 2001, Toni became sick – in a hotel in Paris, of all places – and was eventually diagnosed with chronic fatigue syndrome. Much to her surprise, she has not since recovered. 
 

My note: 'Recovery' is an odd word, isn't it? Re-cover. What am I, a couch in need of upholstery? The path of feeling better after feeling worse perhaps should be called 'un-covery', because we uncover ourselves in the process. We see parts of ourselves that were hiding. Parts that could perhaps use some exposure to the sun…or buns.


The tagline to Toni's book is:
'A Buddhist-inspired guide for the chronically ill and their caregivers'.

Toni was a student of Buddhism before she became ill, so it made sense to apply some of the things she'd learnt to her new situation. However, it's okay if Buddhism is not your thing. The book is highly practical and you can take what resonates with you from it to apply to your situation.

Toni aims to assist us with the following:

  • coping with symptoms that just won't go away
  • coming to terms with a more isolated life
  • weathering fear about the future
  • facing the misunderstanding of others
  • dealing with the healthcare system; and
  • for spouses, partners, or other caregivers, adopting to so many unexpected and sometimes sudden life changes


Toni's symptoms:

"All I could tell them was that I had flu-like symptoms without the fever; an extremely hoarse voice; 18 pounds of weight loss; and a fatigue so devastating that, no matter how small the waiting room chair, I tried to turn it into a bed."

She lists her initial experiences with the health system:

  • a multitude of blood tests
  • 3 infectious disease doctors
  • 2 ENT specialists
  • a rheumatologist
  • an endocrinologist
  • a gastroenterologist
  • a neurologist
  • a cardiologist
  • (on my own) two acupuncturists

Apparently, nothing was wrong with her. But, of course, there was plenty wrong.

"Each morning you expect to wake up not feeling sick even though for weeks and then months – and then years – that has never been the case."

Toni proceeds to explain Buddhism's Four Noble Truths which has a lot to do with accepting where you are in order to reach enlightenment.

 

About enlightenment

'Enlightenment?!' you may exclaim (if you had the energy). 'I'm just focusing on getting out of bed!' 

But I have found that burnout and ME/CFS has been an enforced 'grounding', a re-assessment of values and a heightened awareness of my relationships and my environment. I may be slower, less 'productive' and certainly less flush financially but I do feel…dare I say it…a little more advanced as a human being.  

Do you?

 

About uncertainty

When you are bed bound, Toni explains, everything feels uncertain. However, the sooner you get used to feeling what you are feeling the better. The basic Buddhist premise is this: If you accept your death, your life will be easier. So if you accept your illness, your life is also likely to be easier.

 

About ending suffering

According to Toni's book, the end of suffering is not necessarily about feeling healthy again. This bit stopped me in my tracks (okay, admittedly I was lying down to begin with). The end of suffering is about stopping your mind wishing you were healthy. Panicked thoughts like "What if I'll never be able to work again?" don't help things. Toni replaces these thoughts with other thoughts like: "Be peaceful, sweet body, working so hard to support me."

But you can create lines that feel right to you. 

Whatever you choose to say to yourself, be clear that it's not your body's fault you are feeling unwell. Stop bad-mouthing it. And stop bad mouthing yourself as well. While wallowing in frustration, we can call ourselves, stupid, dumb or clumsy. That's not fair. You deserve better treatment than that, Toni says. 

 

So what are we supposed to do, exactly?

While we're busy beating ourselves up, Buddhism urges us to give the following a go:

  • Loving kindness
    for ourselves and others
  • Compassion
    for ourselves and others
  • Sympathetic joy
    joy in the joy of others
  • Equanimity
    a mind that is at peace despite what's going on

Toni fleshes out these points beautifully with her own ME/CFS fits and starts.

I could go on and on about 'How to be Sick', but you might be better off reading it yourself and sharing with us your thoughts about it.

Here's Toni's website. But you can also buy her book on Amazon and The Book Depository.

 

This post was written by Megan Hills. Megan is a writer and cartoonist who is doing her best to put her inner-critic to bed.  Find out more about Megan

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