For Christmas, my husband’s amazing aunt got me Toni Bernhard‘s latest book How to Live Well With Chronic Pain and Illness: A Mindful Guide. I’ve enjoyed Toni’s previous books as well as her pieces on various websites like Psychology Today.
She has been a huge inspiration for me living with chronic illness. This book just takes the admiration I have for her further.
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| Courtesy of ToniBernhard.com |
This book interestingly balances information for those of us who are already practicing mindfulness and those who are new to the subject, just as it balances information for those of us who have been ill a long time versus those new to the chronic life.
Toni has done an amazing job of capturing so many of the difficulties we face with a chronic illness, from being ill at a young age to self-loathing and self-blaming to how that affects our relationships with others and our caregivers.
It’s truly a must-read for anyone with a chronic illness – or for our loved ones. I’ll probably be bugging T to read this to get his thoughts as well as to see how it helps him to understand both his own and my illnesses.
There is so much that I can say and yet the words escape me so, like I usually do at the end of my reviews, I’d like to share some quotes from Toni that really stuck out for me.
When we become aware of the mental and emotional challenges that accompany chronic illness, not only is it easier to adjust to and accept our news lives, but we’re much more likely to make skillful decisions and wise choices along the way. (3)
I’ve learned that the burden is on me to make my medical condition visible to family and friends, especially because my chronic illness, as is often the case, is invisible. If I don’t make the effort to educate them, their expectations of me may be way out of line with what I can handle. (8)
Mindful awareness of your thinking patterns is instructive because, without mindfulness, when you’re caught up in unpleasant thoughts or emotions, you’re likely to feel as if they’ll last forever. (17)
It’s easy to go beyond our limits when we’re chronically ill, partly because adrenaline kicks in and convinces us that we’re doing fine. Unfortunately, when that adrenaline wears off, a “crash” is invariably in sight. (18)
Allowing them to help when you’re struggling with your health makes them feel less helpless in the face of the new challenges in your life. It can mean a lot to someone to be able to aid a friend or family member who is struggling with his or her health. (25)
Sticking with the example of feeling irritated at physical pain, the way to understand and accept what’s going on in your mind is to gently acknowledge that irritation is present, and then incline your mind toward kindness and compassion for yourself. (74)
To reiterate a point from the previous chapter, physical discomfort has three components: the unpleasant physical sensation itself, the emotional reaction to it, and the thought patterns that are related to the first two components. (77)
Mindfulness meditation is an excellent tool for seeing that you need not believe in or act upon the ever-changing array of thoughts and emotions that arise in the mind. But if these unresolved issues are part of your deeply embedded personal psychological history (as opposed to being the thoughts and emotions that typically come and go for everyone during meditation, such as a wave of sadness or worry), they can stick in your mind and increase in intensity, leading to anxiety, anxiousness, and fearfulness. (92)
Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. (By contract, no one has ever challenged me.) If a stranger is rude to you in this fashion, the best response is to acknowledge to yourself that you feel hurt, take a deep breath, and then immediately turn your attention to taking loving care of yourself. (140)
In addition to the challenges they share with the person in their care, caregiver face their own set of stressors. They must live with the frustration and helplessness of not being able to make their loved one better. They’ve been thrust into the role of patient advocate in the medical system, a role for which they have neither training nor expertise. They often have to take over the running of the household. Finally, they’re the ones who see their loved one at his or her very worst. (195-196)