Occupy M.E.

How To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while she provided me with an advance copy of How To Live Well free of charge, it doesn’t feel right to “review” the book. I love Toni, I love the book, but that’s not really a helpful book review. So instead, I thought I would share how I engage with the text and apply Toni’s lessons in a way that makes sense for my life.

I’m going to out myself right now by revealing the hardest – absolute hardest – lesson that I am trying to learn from Toni: saying no as an act of self-compassion. Toni writes about this in chapter 4 of How To Live Well:

Unless saying yes would be true, kind, and helpful to me, I’m working on saying no.

Toni shares that it is hard for her to do this because she was raised to accommodate others. I was raised to put my family first above all else, and then to put meaningful work above all else. I learned by example that my personal comfort and health do not come first. And I have also learned through hard experience that this is a recipe for disaster when coupled with a chronic disease.

The first part of Toni’s test is whether saying yes would be true to yourself. She explains:

When you become aware that it might be time to say no, either to what you’re doing (such as continuing to work) or to what others are asking of you, stop and ask yourself what would be true to yourself. Will your response reflect your values?

This is so hard for me in the realm of advocacy. Over and over, I hold my work and participation to a high standard. I participate in advocacy precisely because it reflects my values. But Toni’s test doesn’t stop with that. She goes on to say:

Will it ease your suffering – mentally and physically – as opposed to intensifying it? Finally, ask yourself what the self-protective and self-compassionate response would be in this situation.

I completely understand why so many patients take breaks from advocacy, or never get involved much in the first place. ME/CFS advocacy is like David facing Goliath without his slingshot. It is a hard uphill slog each and every day because there is so much resistance to progress. It’s not impossible, and it’s not without successes. And there are certainly many allies to collaborate with. But for ten years, I have persisted in advocacy despite the fact that it intensifies my physical suffering. I was too sick to go to the P2P meeting last year, but I did it anyway. I was too sick to give my IOM presentation, but did it anyway by phone only because I had a high fever and had spent three days in bed. I throw my body down on the train tracks more often than not. But stepping back would not be true to my values and ethics, even though it would ease my suffering. How to reconcile these conflicting impulses? I don’t know.

The second part of Toni’s test is whether saying no would be kind and helpful to yourself. She writes:

In working with this test, I apply helpful to what I think would benefit my emotional and mental well-being. Then I apply kindness to my body. Often what’s helpful to my mind is not kind to my body . . . This means that even if saying yes would be uplifting mentally, if it’s not also kind to my body, I should be saying no.

I don’t do this. I prioritize what benefits me emotionally much more than what would be kind to my body. As just one example, I attended a concert with several loved ones before Thanksgiving. I knew I would love it, and in fact, I was completely transfixed by the experience. And I used my wheelchair to minimize the strain on my body. But going out at night always induces a crash. In making the calculation to do something like this, I usually decide I don’t care how much it hurts afterwards. In fact, if I did not sacrifice my physical comfort, I would likely only leave home for doctor appointments, and would have even less of a life than I do now.

I also faced this calculation during the last two years my mother was sick with cancer. I helped my Dad take care of her, making it possible for him to keep working. I can’t drive or do housework, but I kept her company, supported her emotionally, and kept her eating. And every time I came home from staying with her, I crashed. My husband would take care of me, and then I would go back for the next treatment cycle. I was too sick to be doing this, I was too sick to be in the hospital with her as much as I was at the end, too sick to stay with her for the days of hospice care. But I did it anyway. I gladly sacrificed my physical comfort and even perhaps my long-term health in order to take care of my Mom. And I am so glad that I did. I absolutely treasure that time I had with her. Saying no would have protected my body but injured my soul.

Toni has faced this too. She writes,

I used to let what I thought would help my emotional well-being trump what I thought would be kind to my body – and that may be warranted on special occasions . . . This may not be the case for everyone but, for me, a day spent in bed feeling terribly sick almost always wipes out whatever emotional benefit I gained from the evening [out].

I don’t see this as black and white, and I don’t think Toni does either. Sometimes we have to tip the balance toward emotional well-being over physical comfort. But what I’m trying to learn from Toni is to tip the balance a little bit more towards protecting my physical well-being. My instinct, especially where my family is concerned, is to say yes even when I know my body will suffer. I’m trying to dial it back, and be a bit more selfish self-compassionate than I am naturally inclined to be.

How To Live Well is, like Toni’s other books, very compassionate and gentle. She concludes the chapter on saying no by saying, “Think of it as a practice. That way, you won’t hold yourself to too high a standard.” This is one reason why I find Toni’s books to be so helpful: she only makes suggestions and shares what works for her. Try it, experiment, and see if it works for you. But if not, that’s ok.

For me, deep reflection on Toni’s writing reveals the wisdom behind her practical advice. Each chapter in How To Live Well is short and seems straightforward. But I find layers of meaning and lessons in each short chapter. So I’m practicing. “No” is not as comfortable a word for me as it should be, but I’m practicing.