Pacing is Everything
Chris has been living with a chronic headache since 2017. It is a rare form of headache that is kind of like new daily persistent headache (NDPH) and kind of like chronic migraine. His headache began after a plane ride. Chris experienced vertigo for a week after the flight, and after that, he got a headache—and it has never left. When Chris compares his life before 2017 to his life now, he estimates that there has been a “90% reduction in capacity across all kinds of things,” and for him, living well is about a commitment to making the most of the 10% he has left. As I will illustrate in the telling of Chris’ story, rigorously pacing daily activities is the foundation for him being able to use his remaining 10% capacity to engage in activities that he enjoys and make the most of his challenging circumstances.
Turning Over Every Stone
Chris describes the first few years of his experience living with chronic pain as having more of a medical focus. He shared with me, “You’re on this mission to find out everything you can about it and try everything.” And for Chris, the thorough investigation of his challenges with pain is an important foundation for the ongoing work of accepting his limitations and living well. He told me:
I think that whole process is key to chronic pain, you need to turn over every stone you possibly can to see if there’s something you can do to better your life, so whether that’s conventional or alternative treatments, I feel like I’ve turned over every reasonable stone that I could.
Chris’s sense of having explored all the possible options is also validated by the people around him; he relayed to me, “Everyone’s like you’ve gone all the way with it, and you still are.” If Chris had not been so diligent and exhaustive in exploring all the treatment options available to him, he would be much less willing work with his limitations because he would still be holding on to the idea that the answer to changing them is out there, that he just had not turned over the right stone yet (see Figure 1).
Despite feeling like he has turned over every reasonable stone—and having that effort affirmed by others—Chris still experiences doubt. He shared with me:
I’ve talked with a lot of people with chronic migraine and other pain conditions, and I know it’s a very similar experience in terms of the impact on people’s lives. So, I know I’m doing well, but you obviously just have those doubts right like, is there anything left to unlock, is there any more capacity that I can get out of my day if I did this differently or that differently.
Chris emphasized that because no one has the exact same pain challenges as him he always wonders if he is doing this right and how someone with the exact same thing would structure their day. He still holds some hope, even though he thinks the probabilities are pretty low, that there will eventually be an intervention that helps him gain the capacity to do more in his life.
Learning to Listen to His Body
A foundation of living well with pain for Chris has been learning to listen to his body, and it has not been an easy thing for him to learn. He explained to me:
It’s been a lesson that I’ve had a really hard time learning. I think it’s just because I want to go out and do stuff, right? I want to be social, I want to exercise, I want to bathe, and I want to do all the normal things that a lot of people do. So, it’s been my hardest lesson probably like if I was to think about the one thing chronic pain is trying to teach me, is just to listen to my body and make it easier. I was a pretty driven individual. So yeah, I think it’s been it’s been the toughest thing to learn just because it means not doing stuff. It means saying no to social things, it means saying no to travel, it means saying no to being on boats, it’s all these things that I’d like to do. It’s basically like restraining yourself. Beneficial in the long term but it’s hard to do.
There has been a tremendous amount of loss involved in Chris’s process of learning to listen to his body. He wants to be so much more active and engaged in his life than he is able to be at this point. Through restraint, however, Chris has been able to use pacing to manage his activity levels in a way that allows him to stay connected to the things he enjoys most in life.
As hard as it is for him not to do things, Chris makes a point of acknowledging that not everyone living with persistent pain would be able to pace as rigorously as he does—and still have capacity to do things they enjoy. In speaking to this point, Chris shared with me:
I’m a very privileged person, very educated. I’m male, I’m White, my parents were middle class, I have a family, I have parents, I have a sibling, I have a longtime girlfriend who I live with, so I have all those things in place to make the potential of me living well better than a lot of people. I have all those foundational things, the support of my parents has been great emotionally, financially … My mom would do laundry and stuff. I was at a workplace where I had private disability, it’s not inflation adjusted, so it’s a bit rough over the years but I have livable income, which is insane, I just feel so blessed. I had to fight for it, I had to sue for it. Very difficult but so grateful to have that so I can, you know, I’m not worried about my rent, I’m not worried about food, I hire a cleaner every three weeks because I can’t do laundry and stuff like that, or it would be a huge tradeoff.
The broad range of supports Chris has in his life has made it possible for him to learn to listen to his body and pace his daily activities. If Chris had to do all his own housework, or if he was navigating the stress of poverty and housing instability, he would not be able to listen to his body in the same way and the daily tasks of life would become his entire life.
A Short Walk to a Large River
Chris loves being around natural bodies of water—oceans, rivers, and lakes. In his ideal lifestyle, he would be travelling to explore new rivers and beaches, but his current capacity requires him to stay closer to home. He explained to me that being able to do things he enjoys, which is an important part of living well for him, “involves significantly modifying activities, including breaking down activities into smaller components, shorter spans of time, and closer to home.” To draw an analogy to his capacity, it might be fair to say that Chris is able to access 10% of the things he enjoys doing. For example, Chris lives near a large river that is only a 5-minute walk from his home. Visiting this river does not hold the adventure and exploration that he longs for, but it is a meaningful part of him making the most of his 10%. It is doing what matters to him in a modified way. He told me a lot about his experiences at the river:
Sitting at the river’s edge—or when it’s windy, nestled close to the trees—in my fold-up chair feels like an activity, even when it’s just sitting listening to music. When it’s sunny, all the better, as it makes my body feel warmer and better when I can’t move and exercise as much as I’d like to.
When the weather is warmer, Chris will sometimes go for a quick swim if he feels up for it. The river changes every day, and Chris enjoys watching it change over the seasons. Sometimes in the winter, the water will be 12 feet higher and there will be giant trees shooting down it. Chris finds it powerful and humbling, and when he is by the river, he finds that there is “usually something in nature to marvel at.” Being able to spend time at the river is such an important part of living well for Chris (see Figure 2).
Feeling Connected to a Place
The time Chris spends at the river close to his home supports him in being more social and in feeling connected to a place. When sharing about his time at the river, Chris told me:
It’s a great place to run into people including neighbours, friends of friends, or to have a random chat with a stranger. Even if conversations are brief, they add to my wellbeing, as being in pain leads to a lot of time alone.
From listening to Chris, I understood the river to be a gathering place in his community, and being able to be somewhere where people gather supports him in feeling more connected to his neighbourhood. He commented further to me: “I think a lot of people are kind of ambivalent to place but it’s cool to be rooted in a particular spot, a particular little neighborhood.” Again, Chris’s ideal lifestyle would involve more people, more exploration, and more activity, but he is committed to focusing on the possibilities of the 10%. He works with a pain psychologist who emphasizes making the effort to bring in the “tiniest bit of joy, even if you’re depressed and you’re in constant pain,” and Chris is committed to finding ways to weave these little joyful moments into his life. He shared with me: “I wish I could have relationships with lots of other people, but it is meaningful to have a connection to your neighbourhood, and the people in it.”
Having Something to Talk About
Chris has a lot of supportive people in his life: his long-term partner, his parents, and a lot of understanding friends who can talk with him about how he is doing. Something that came through in my conversation with Chris was how important it is for him to feel like he has something to talk about with his family and friends. The rigorous pacing that enables him to go to the river regularly or occasionally go on a small road trip or attend an event like a hockey game are about him doing things he enjoys, but they also give him things to talk about with the people in his life. He told me a story about his physician’s assistant commenting to him about how amazing it was that every time they spoke, Chris had something to share about an adventure or activity. By endeavouring to always have something to talk about with the people in his life, Chris is finding a way to stay social and in connection with others, which are important parts of living well for him.
Having Something to Think About
Throughout my conversation with Chris, I noticed a pattern of him acknowledging things that are hard about his current circumstances and then shifting his focus to point out what he does have or what he can do or how he could move forward. I reflected that I noticed this pattern to him, and I asked about this thought process. He told me:
I think it’s very repetitive, like every day I’ll probably think about something like this probably 10 to 20 times, so it’s very repetitive … I don’t know what the other options are, like if you dwell too much on it, you just live in a place of sadness and grief and depression.
Chris frequently has thoughts related to the challenges he is facing and the loss he has experienced. He completed a graduate degree and now feels like he cannot use his brain. He had a job he loved that he can no longer do, and while he longs to have a profession, he has not been able to identify anything that he has the capacity to retrain for. A significant barrier to work and managing many aspects of life is his very minimal capacity for screen use. Chris feels guilty for being on disability. He finds it hard to make new friends in his current circumstances, and there are many ways that persistent pain negatively impacts his sexual relationship with his partner. If Chris let his thoughts ruminate on these challenges, he would, as noted in the quote above, be living in a place of sadness, grief, and depression.
Chris does not deny the loss or the grief, and depression is already a part of his experience living with pain. He explicitly told me: “I think you have to be depressed about it.” What Chris does, which is an important part of living well for him, is persist in the disciplined refocusing of his thoughts—moving from thoughts that will make him feel worse to thoughts that support his capacity to persevere. The meaningful activities that Chris engages in also help to play a role in this refocusing. When he decides that he wants to do something, for example, take a trip with his partner, thinking through what this trip could look like and how he can manage the pacing of everything involved to keep it within his capacity gives him something to refocus on. Chris is constantly attending to the way his thoughts impact his wellbeing, and multiple times per day, every day, Chris is redirecting his focus to thoughts that support him living better.
Related to Chris’ ability to repeatedly refocus his thoughts is his emphasis on the importance of resilience. He shared with me: “I feel like that’s a key part of the journey, is just have resilience.” Chris has a remarkable capacity to persevere through adversity, and people in his life reflect that to him. He told me: “People say that I have, I don’t know, just like an ability to just keep going and keep somewhat positive about life and still have an interest in doing things.” His capacity to persevere through adversity is woven throughout his story and is illustrated both by how he acts and how he thinks.
The Stigma Surrounding What Helps
Opioids are a pharmacological intervention that have been helpful for Chris. As addressed earlier, he has exhaustively explored interventions for his pain. He said to me: “I’ve tried like all the classic migraine stuff, Botox, topiramate, like all the things, but the only thing that’s worked is opioids.” While Chris is grateful to have a medication that helps, he finds it challenging to navigate the social stigma around opioid use. His experience is that using opioids leads people to “look at you in a very different way in the healthcare system.” He understands why the stigma exists, and would love not to need opioids himself, but he has not found other options at this point. With respect to using opioids, Chris shared with me: “That’s one thing I do feel a bit ashamed of.”
Staying in Relationship
A final piece that is central to living well for Chris is staying in relationship with people. He has made an ongoing effort to stay in connection and to continue to build relationships. His focus on having things to share with others is one of the ways that he commits to being in relationship with others. He also spoke to me about the importance of caring about how others are doing:
I feel like you can get very insular when you’re really struggling, so it’s like: What’s the impact that you’re having on people in your life, particularly, your family or your partner and how to make sure they are doing okay? Because then it doesn’t help you if they’re pushing their emotions aside or whatever it might be, so kind of focusing on them throughout the process.
Chris has found it harder to make new friends when he is so limited in what he is able to do, and over the years, some of his close friends have moved further away. It has been important to him to attend to the relationships in his life, and that is a central piece of advice that he would give to others navigating chronic pain—find ways to continue to show up in your relationships because in many ways the quality of our relationships determines the quality of our lives. And through everything that he does, Chris is committed to making his quality of life the best that it can be.
- Image submitted by Chris as part of his response to the question, what does “doing better” or “living well with pain” mean to you? Part of living well for Chris is spending time at a large river that is close to where he lives. This picture of his feet by the river also metaphorically captures the persistent effort he has put into turning over every stone. ↩︎
- Image submitted by Chris as part of his response to the question, what does “doing better” or “living well with pain” mean to you? Spending time at this large river near his home is an adaptive way that Chris has been able to do the types of things he enjoys. ↩︎