A Not-to-Do List for living with Fibromyalgia Fibromyalgia Community

I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness. I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness. In my own case, I’ve found that most of my self-growth has come from recognizing, accepting, and learning to do things differently in response to these restrictions. I thought I would share my own not-to-to list:

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Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals. When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me. Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself. Now I challenge these thoughts. When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed. These are people that you need to set boundaries with, regardless of any guilt they may throw your way. Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people. She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations. Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body. I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep. So instead, I am writing one bullet point, then resting, then writing etc. You have probably had ‘pacing’ recommended to you before. Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc. Instead, I regularly check in with my body and accommodate accordingly. To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
Do not add judgment of yourself on top of the challenges you already face: most of us are our own worst critics. We often set impossible standards for ourselves. Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things. When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place. By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this. When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’. I take a deep breath and begin again.
Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life. Intentions are always present. We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.