the hard truths we must accept to embrace pacing for chronic illness
pacing requires not just changing your physical routine, but also grappling with difficult emotions
Last week I was emotionally and physically spent. I had received unexpected difficult-to-swallow news at my doctor’s appointment, I was enmeshed in a perplexing interpersonal situation, and my pain was so loud it was making it hard to hear my own thoughts. I could feel my nervous system shutting down from overwhelm and my ability to accomplish minute daily tasks was greatly diminished.
How did I respond? I spent a lot of the week in bed; I decided that any “extra” activities on my to do list were now irrelevant; and I prioritized time alone to replenish my energy. In other words, I gave myself the space to recover.
Resting is not how I would have responded in the past. In the past, I would have attempted to push on, driving myself further into a state of frazzled nervous system dysregulation, causing a deeper flare. Last week, I proved to myself, after more than a decade of living with chronic illness, that I had finally learned how to pace.
so what is pacing?
Pacing is the practice of finding a balance between activity and rest. It is a complex interconnected system that requires us to learn how and when to expend energy and how and when to prioritize recovery. Pacing aims to break the boom-bust cycle in which chronically ill folks fluctuate between periods of activity and periods of intense flare-ups. The idea behind pacing is that by proactively choosing rest, we will be able to avoid forced rest from flares.
pacing requires delay of gratification
Pacing requires us to be forward-thinkers. It requires us to delay gratification. Delay of gratification is the concept of resisting an immediate reward or impulse for the opportunity to gain a larger or more meaningful reward in the future. For example, not making smaller weekly purchases so that you can save up for a larger purchase.
Walter Mischel, a psychologist at Stanford University in the 1960s and 1970s, popularized the concept of delay of gratification through his famous marshmallow test. In this experiment, one marshmallow is placed in front of a child. An adult tells the child that they can get **two** marshmallows if they do not eat the first marshmallow while the adult is out of the room. The adult then leaves for 10-15 minutes. Video footage of this type of experiment is fascinating. Kids employ a variety of techniques to help them not eat the marshmallow (see video below) like smelling the marshmallow, closing their eyes, staring it down. It’s clear that not eating the first marshmallow is incredibly difficult!! Even when they know a larger reward is in the future.
To make the connection between the marshmallow test for children and pacing as an adult crystal clear think about, for example, putting off the satisfaction of checking something off your to-do list or attending a social gathering today (one marshmallow), in order to reduce the likelihood of a flare in the future (two marshmallows).
the hard truths we must accept
Pacing is not as simple as deciding to rest. It requires grappling with inner shame, sadness, and anger. And even tougher, it requires fighting societal messages about the “right” kind of body and ability.
You may find the act of pacing easier if you are able to accept a few hard truths. I want to be clear — absolutely none of these truths are easy to accept. But maybe you’re ready to take small steps on your journey toward acceptance. I will write from my own experience but there are additional reflection questions for you in italics.
You must accept that you are sick. Now this is the biggie!! I could write a ten-part series on this one statement. But for the purpose of pacing, I was not able to truly pace until I accepted on a deep somatic (body wisdom) level that I was sick. Due to my dynamic disability, I spent a decade choosing to ignore that I was chronically ill during times of relative health, and then agonizing over my body during flares. I couldn’t accept that I was sick and create a sustainable plan to escape the boom-bust cycle, I obviously just needed to figure out how to stay active all the time by engaging in constant activity! Unfortunately, that line of thinking led me to overwork and overactivity which culminated in a year-and-a-half of severe illness that I am still working to get out of. Ask yourself: do you get caught in the boom-bust cycle? How do you relate to your illness when you’re feeling “better”? How do you relate to your illness when you’re feeling bad?
You must accept that you can’t physically do everything you want to do. Now this is true for almost all humans; most people can’t run a marathon or climb Mount Everest just because they want to. But the scale can be particularly painful when what you want to do is take a shower and have it not consume all of your energy for an entire day (speaking from experience…). I spent too many years insisting to myself that the signs my body were giving me could be ignored. That I could drink alcohol without severe disruptions to my functioning, that I could run without severe pain, that I could stay up until 3am without prolonged fatigue. It was clear these activities were greatly impacting my life, but I decided to try just one more time rather than accept that my body had limitations. Ask yourself: are you engaging in activities that are hurting future you? What physical activity has felt the hardest to give up? How can you be kind to yourself about how hard that was?
You must accept that the part of you that doesn’t want to rest isn’t always acting in your best interests. We all have parts of ourselves that developed throughout our lives to protect us. But sometimes, these parts no longer serve us and actually cause more harm (see a brief explanation on “Parts” therapy or Internal Family Systems). If you find it difficult to rest, there is a reason. For me, it was because resting felt unproductive. Because I grew up in a family that valued success and accomplishment at the expense of health and happiness. So there is no use in shaming the part of you that finds it difficult to rest, it was protective and necessary at one point. However, maybe there is a way you can ask the part that doesn’t want to rest to back off every once in a while. Ask yourself: do I find it hard to rest? What purpose does this serve me? How does it get in the way of my health?
This week I’ve been able to leave the house most days, to concentrate more intently, and to get back to the laundry list of items I need to do as a chronically ill person who's working part time and applying for jobs. I’m back to this level of functioning so quickly because I gave myself the space to pace. Maybe you can do the same?
Wishing you luck on your acceptance and pacing journeys. Remember, one crash isn’t the end of the world. I’m learning. You’re learning. We’re all learning. <3
Another wonderful post, Dr. Talia! I love the "ask yourself" reflection questions. Would love to join a discussion group to talk more! :)
This line "one crash isn't the end of the world" ❤️🔥