Weekly Inspiration: Thoughts on Illness from Being Mortal

Last fall, one of my book groups read Being Mortal by Atul Gawande, a nonfiction book by a medical doctor who writes about illness, death, and end-of-life issues from both personal and professional experience. The book is well-researched in its facts, and he is open and honest about his emotional experiences, with his father's illness and death and with his patients' various experiences. It is a moving and very powerful book, and we had a huge turnout for book group, and an excellent and in-depth discussion about it. You can read my full review of the book at my book blog. He covers the state of the medical profession today with respect to these topics and also some (far more hopeful) examples of new approaches, as well as what he learned personally through his difficult experiences.

While everyone should read this important book because we will all deal with sick and dying family members - and eventually, ourselves - one day, I also found that I related to many passages as someone not dying but living with chronic illness. Here are a few of the quotes that really struck me, with respect to my own life.

""No one pitied him as he wished to be pitied," writes Tolstoy. "At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted.""
          - Quoted in Being Mortal from a novel, The Death of Ivan Ilyich by Tolstoy.

I don't like the word "pitied" in this passage, but I can wholeheartedly relate to the sentiment - maybe swap out "pitied" with "understood" or "accepted." Certainly, especially in my early days of illness and anytime I crash/relapse badly, I crave to have someone treat me as my mother did when I was a sick child - to comfort me and take care of me. But Ivan Ilyich's experience with his terminal illness in this novel is much like the typical experience of people with chronic illness - it makes others uncomfortable and scares them, so no one will just admit what is happening and treat you honestly. I completely understand that (and I'm now interested in reading this Tolstoy novel!).

Here, in a later passage, Gawande refers back to the Tolstoy novel and explains it this way:

"Tolstoy saw the chasm of perspective between those who have to contend with life's fragility and those who don't. He grasped the particular anguish of having to bear such knowledge alone."
          - from Being Mortal by Atul Gawande

Ah, yes - he explains that far better than I could! That's the crux of it, isn't it? Life's fragility. It's what scares people so much, with chronic illness, as well as terminal illness or death. No one wants to accept the truth of your situation because of that underlying, unspoken fear that if it happened to you, it could happen to them. I think this is behind much of the denial we experience as those with chronic illnesses encountering healthy people, even (or especially) our closest family members.


Regarding the medical profession and being a doctor:

"If your problem is fixable, we know just what to do. But if it's not? The fact that we have no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering."
          - from Being Mortal by Atul Gawande

So many patients with ME/CFS (or undiagnosed tick infections) have experienced exactly this response from the medical community. One rheumatologist I saw during my first, mysterious year of illness gave me a cursory exam (clearly looking for the tender points of fibro, which I didn't have), wouldn't let me talk, and then dismissed me with "I have no idea what's wrong with you. Good luck," and walked out of the room. I was left sitting on the exam table in my paper gown, gutted by his lack of compassion, and I burst into tears. Thank goodness he was the exception for me and at the end of that year, I found a new primary care doctor who not only immediately recognized my illness as ME/CFS but also knew enough to offer me some treatments. But I know I was one of the lucky ones, that many patients never find a doctor like mine, and treatment from medical professionals like Gawande describes is far more common.

"Whatever the limits and travails we face, we want to retain the autonomy - the freedom - to be the authors of our lives. This is the very marrow of being human."
          - from Being Mortal by Atul Gawande

Here, he has realized what is at the center of end-of-life issues: the need to be in control. He finally recognized the very dehumanizing feeling of having no say in what happens to you. Again, this applies equally well to those with chronic illness, and is why I often express here on the blog the importance of being your own advocate, learning as much as you can about your illness, and asking your doctor for specific treatments. The old model of the all-knowing doctor simply doesn't work for us (and according to Gawande, it rarely does in any circumstance!). We need to be partners in our own care. Check out my page on Effective Treatments for ME/CFS for a roadmap on how to get started in this critical part of our illness journey.

As you can see, I got a lot out of this very important and powerful book. While it brought back memories of my own dad's death from melanoma a few years ago and thoughts about the wishes of my 94-year old father-in-law, much of the book also felt relevant to my own life with chronic illness. I highly recommend this book.


Have you read Being Mortal yet? I would love to hear your thoughts - about the book or these quotes I have excerpted here - in the comments below.

I read Being Mortal in print:


It is also available as an audio book - at the link, you can listen to a sample, which is about the passage from the Tolstoy book: