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.
Hi Jennie, thanks so much for ‘spot-on’ words of wisdom. Learning to say ‘no’ is a continuing demand for most of us. From day t0 day, the need t0 say ‘no’ changes. For me, I accept that I will have a ‘mini’ crash twice a day just in the course of living my mostly homebound life. Each mini crash requires hours of bed rest.
I have learned how to plan in advance to avoid the Maxi crashes. They still happen, but infrequently. The key is to just say ‘NO’. Very, very difficult, but absolutely necessary. For me, just responding to this blog engenders overwhelming fatique & aches. Fuggetibout advocacy. If only it were possible. I think the mantra is to recognize our individuality; each of us must understand and plan our own sequences of ‘NO’ One size does not fit all. Anyway, thanks for the insight,
I agree completely!!!
Hi Jennie,
I’ve been working on the “no” for years as part of my process of healing and I agree with everything you and Toni write. Yes – it’s so different for everyone, as well as for each and every situation. I’ve read her first book and also have long-standing debility due to ME/CFS.
I found myself realizing last week that I needed to say no to friends and went through a few hours of relative agony. I watched my internal debate about it, then wondered if it was really necessary, and finally – on realizing it was really important for my body – had to figure out just HOW to do it. Including risking my friendship.
I, too, grew up with a family that supports overriding one’s self. I learned how to just keep pushing through. But I had an insight that morning before getting up that ended up really helping me with my decision. I had the image of my chronic illness as a baby in one example and as a young child in another. And what I noticed was that thinking in this way helped the decision become much clearer.
If my little one was in great distress, I would want to have the compassion and composure to put everything down and hold and comfort and rock him or her; to protect from anything that might cause harm. If I was pregnant I would want to rest and do whatever was necessary to maximize his or her well being. I could feel how this would precede everything else in my life. While it’s much more difficult with something as endless as a chronic illness, it was still very potent for me. It’s amazing how we can find an answer – as well as self-compassion – with more ease when we imagine it as another person needing support. It’s putting our early training to use!
May you continue to find your way and your peace and your joy with those truly uplifting experiences that are totally worth the periods of recovery – as well as the times when you need to say no.
Thanks for all that you do!!
What a powerful and beautiful image! I’m going to reflect on that. Toni talks about how we speak to ourselves in ways we would never inflict on a friend. But your analogy is both beautiful and terrifying, at least to me. The way I treat myself is the opposite of how I interact with my niece and nephew. Wow, I need to think about this.
Jennie,
You hit a cord when you talk about emotional well being, and being true to your soul- as compared to physical well being. For some the balance is not equal…for example, you are who you are: a compassionate, kind being who is a fighter, therefore there is not a distinct line between a yes or no. It is a balance of of what feeds your soul while keeping your body intact….And that is hard, very hard when you have this disease. I personally struggle with that so much because I am just barely stepping out of the acute phase of this illness and meanwhile learning these invaluable lessons from people like you and Toni who have been suffering with this longer than I have. I feel blessed to have found you and other compassionate souls who have offered the small yes’s to help another soul. Great words by Toni and great interpretation by you. The book you suggested by Toni is in the mail… and I can’t wait to read it.
Much Love.
I find line for “no” in relation to feeding the soul and having the body suffer to be rather fluid. It’s different for everybody every day. It is personal and dependent on what the day may allow– for me, and I’m sure many others, there are bad and worse days. No good days in there to make it easy to judge, even after 30 years. Sometimes the “no” isn’t easy to figure out. I live a push crash life, every single day. But if I didn’t, I would do nothing. Not even eat. I don’t have much by way of support.
Another thing about “no” is that I feel terribly judged by others for it, as they don’t see the “pay ” part of the push. I suck at it just being able to say it outright and not apologize. I have become more and more aware that I apologize for things I can’t do or for my cognitive issues that show themselves in and interaction, or whatever other symptoms that have me at “no” . I sit and wonder if I would do that if I had a less stigmatized and more understood dx.
Thank you for a great post about making these decisions, especially at the holidays when we want to do much more than we can. Two years ago I enjoyed one relatively (for me) big outing a week for six weeks–and I truly enjoyed myself, feeling up to doing these things in the moment, yet paid for it in much poorer health until the following July. I’ve been disabled by ME since 2004, and when my mother was on a hospice half way across the country, I did as you did, Jennie, flying to be at her side as soon as I recovered from the last effort enough to do so. It was at that time that I developed concomitant VZV (varicella zoster/HHV-3/shingles) that are as constant for me as ME despite remaining on the highest doses of medication for them. Was it worth it? Like Jennie, I wouldn’t have missed it; while my body suffers, my soul was nourished in a way that sustains me still. I turn to Toni’s books often, finding comfort in not being alone in feeling misunderstood and unsupported about my illness, my need to pace, people seeing me only when I’ve saved up energy to be with them but not coming around to visit or check in during the crashes. I’m sorry for you all that you share this loss and sadness with me, but thank you for writing.
I began saying “no” a year ago and I still struggle with it. My natural inclination is to help with whatever is going on. I now try to let others take care of whatever needs doing, but sometimes I still find myself volunteering to do it. And then, of course, realizing what I mistake I’d made later.
I’m not sure if it’s my inability to adequately describe my illness, or people’s lack of compassion or empathy, but I’ve found that since I started saying “no”, my friends have pretty much disappeared. From what I understand from reading about others’ experiences, this is not an unusual occurrence. I’m not sure what to do about it, if anything. I’ve read one of Toni’s books and plan on reading this one as well – perhaps she addresses this problem.
Leona, I relate to everything you just wrote. I am hoping that as the news about our illness gets out, evolves, people will hear it and think of us differently. I keep thinking that if/when they’d understand the push-crash better, they may respond more kindly and supportively. But they may not; us humans often turn away from the suffering of others, to think that we have much more control over our health than we do. While it can be lonely, it may be best to let go of the friendships that don’t come with support. We can’t get figs from thistles.
Toni does address it in her book in several places, both in terms of how to communicate with family and friends, and how to deal with any rejection that comes back from them.
I think this post is very relevant for those of us who want to participate more in advocacy. In my first seven years of illness, I have so far erred on the side of saying “no” to ambitious advocacy requests that have come my way for health preservation purposes (both physical health and emotional well-being), in part because I am single and can’t risk getting worse, and until recently, I was not detached enough from my own predicament not to let things get to me.
But I’m on the cusp of becoming more involved and instead of less involved — simply because there’s an unmet need and I have a desire to do more for this cause. I liked Toni’s first book a lot. It sounds like her latest book might be good to have on hand as I know my personality — similar to so many other patients — to over-perform when I feel my support, skills, attention, etc. are in need by others, and as I’m already this way when it comes to friends and family.
Dear Anonymous–Feel good about taking good care of yourself even when that means that you can’t do advocacy for stretches at a time. A blessing that has come through the internet in the last few years is the sense of community, that we don’t have to do it alone. This is in marked contrast to when I first became sick twelve years ago when there was little information, few forums to connect with other patients, few opportunities to come together for advocacy. It felt then like every letter I wrote needed to say so much–resulting in a huge effort. Being involved more in the last few years, once great blessing is to see how we each bring something to the table, and that others can and do cover aspects of this far better than I can. We are a team. Whatever big or little effort we can make, it all helps. And when we can’t, others seem to step in and carry the ball for us. And when we can again, we carry it for them.
With every ME advocacy initiative I undertook (demonstrations, campaigns, etc), I crashed. Hard. I would do one thing, and then spend weeks or months in bed, too weak to function. Until the time finally came when I just found I couldn’t do anything for ME advocacy. I wanted to, but my body wouldn’t let me. I still try sometimes, and sometimes I can actually pull something off (like the op-eds on ME that I had published at WBUR.org and the San Francisco Chronicle), but by and large, I’m too weak to do much of anything. I think I can still write, which is a blessing. So I’ll see if I can do advocacy on that front. But honestly, if I’m honest with myself, I’m just too weak to do that or anything at all. Such a shame.
Thank you for taking those bullets for us, Rivka. Sometimes I get a picture of us all in my mind as a group of tattered soldiers, hobbling along, but entering the fray with so much courage.
@Carollynn, I totally agree! I feel this is a decades-long war and we patients are the soldiers. Tattered but still hobbling along (!!!), especially with folks like Jennie still in the fight.
So much thanks to Jennie, Toni & all the advocacy contributors. Wishing I could write a blog, a book, or participate in a conference. The real truth is that I’m disabled. I advocate for disability issues when I can; i.e. by talking to store managers or others when there are no mechanized or manual wheelchairs available. I even had
a motorized WC myself, & a relative bought me a handicap van; I found I couldn’t even use these.
All my close relatives know my condition. They know, that at any moment, I might disappear into the bedroom to rest. I have few close friends…I would be too unpredictable. I do not join groups I have an interest in for the same reason. Most of
the time I accept my condition. But frustration and the sadness of saying ‘NO’ are a constant in my life. Nevertheless, I try to look at the bright side. I can still do most ADLs most of the time. I can still read (some of the time), etc. Not expecting any ‘cure’ or treatment in my lifetime….just hoping for daily peacefulness.
Thanking others for seeking a way forward.