What are values-based activities? They are actions, activities, hobbies, practices, etc. that align with our values (how we want to treat ourselves, others, and the world/what is important to us). Colouring may seem like a silly one, but here me out! You can also check out this podcast episode I did on values-based living.
Try out a values-based activity for yourself so that you can keep making the most of it!
There is a Taoist parable that tells of an old man who fell into a river that swept him toward a dangerous waterfall. There were people watching who feared for the old man’s life. By some miracle, the old man came out of the water at the bottom of the falls completely unharmed. The onlookers asked him how he managed to survive, and he replied, “I accommodated myself to the water, not the water to me. Without thinking, I allowed myself to be shaped by it. Plunging into the swirl, I came out with the swirl. This is how I survived.”
If the old man had struggled against the water, he may not have survived the fall. At least that’s how he sees it and is what the parable is suggesting. This is non-contention. I came across the parable when I was… well if you read this blog regularly then you can probably guess it… meditating. I was doing a guided meditation and at the end, the meditation teacher told this parable. It really spoke to me because I have heard this idea spoken in many different ways already, and it’s something I have been practicing for sometime. I notice that in my day-to-day life, when I am swept up by my pain or symptoms of my illness or thoughts about my pain or emotions such as anxiety that arise, when I struggle with these things, it just makes the day worse. It makes the pain (physical and emotional worse) and I feel less resilient. When I do the opposite – accommodate – then my days are pretty good. Thankfully I’ve gotten good at accommodating.
While I’m sure some of you are also good at accommodating, there are probably many of you who are not. It takes a lot of work and practice to be able to do this. It’s way more natural for our minds to struggle because our minds think that it’s the best way to survive – I mean, thousands of years of evolution have told them this. Yet in modern times, the struggle often ends up being less helpful (but try telling that to the primitive part of your brain). I find that meditating is helpful for accommodation but I totally get that it’s not for everyone. I also find similar mindful practices like body scans, observing-breathing into-making room for-and allowing my feelings to also be helpful. And engaging in those values-based behaviours that I love. That doesn’t mean I push through my inner experiences. There is a delicate balance between pacing and going to my edge. And on days that I go to far and do too much, I offer myself some compassion because it is hard to be human, and it is hard to be a human with a chronic condition.
So, here’s what I suggest:
try out some mindfulness practices, like the ones found on my YouTube channel
incorporate more self-compassion into your life: kind words, soothing touching, remembering that it is human to have pain
engage in values-based activities that allow you to pace and don’t take you past your edge
seek mental health (and physical health) help from a licensed professional as often as needed.
Even when we are limited in what we can do (because of our illness or pain) we should still live by our values and take actions that we can. If you play an instrument, that might mean playing your instrument! Or if you’re unable to play at the moment, maybe it means listening to some music that you love. What can you do to live by your values?
This is just one way to keep making the most of it!
Which would you rather do – something (a behaviour) to give yourself short-term symptom relief or something (a behaviour) that aligns with your core values, even if the goal isn’t to bring you symptom relief? The first option, by the way, isn’t necessarily connected to your values. There was a time for me that I probably would’ve done the later. Hell, I did do the latter! I definitely acted in ways that weren’t indicative to what was important to me at all but did help me out in the moment. Things like lying in bed, avoiding exercise, asking my partner to rub my back or just stay near me for hours, missing work, and on and on and on. And I’m not even saying that any of these are bad things. They were just bandaids that made that moment better, but didn’t help my pain long term and ultimately had a lot of costs (like the end of that relationship, feeling physically weak, and making work more difficult). Over time, reconnecting with my values became a much more viable response – and in some ways, even helped to decrease my pain.
What are values? They are our principles or standards of behaviour that we want to engage in. They represent what is important to us. Some examples are:
and on and on and on
Different values can also show up in different areas of our life, like work and education, relationships, personal growth and health, and leisure. Values often motivate how we behave in different situations. Sometimes we just live by our values without thinking about them. However, sometimes, when we find ourselves dealing with chronic pain and chronic illness, we can get removed from our values, like I did. There are two things we can do to figure out if we have been removed from our values while dealing with the terribleness of chronic pain and illness.
Figure out what our values are – using a checklist and/or a bull’s eye.
Figure out (nonjudgmentally) what “unworkable action” we are engaging in that is acting as a “bandaid” but isn’t really lining up with our values and how we want to be long-term.
Okay, but why should we do all that? You might be wondering why not just stick wth the bandaid solution. And you can. But typically we have better overall quality of life if we live by our values. We engage in behaviours that are more fitting to the person we want to be and the life we want to live. And, what research finds (plus just looking at my own life and the lives of my clients), is that pain and other symptoms bother us less. It doesn’t mean they go away, they just don’t really interfere with our lives anymore. The research finds that our self-care for our illnesses and pain improves when we are motivated by our values (everything from self-direction, pleasure, and health to responsibility and socialization). We become more willing to “make room” for our difficult sensations (and thoughts and feelings) when we live by our values.
I’ve shared in a number of posts different ways that I live by my values. Here are a few consistent ways I do in my life.
Presence (aka mindfulness) – I meditate daily, do yoga several times a week, and just try to fully engage in as many activities during the day that I can.
Fitness/health – I eat healthy (gluten-free, dairy-free, meat-free – though I do allow myself some cheat days) and I exercise daily (walking and/or strength training, and/or physio exercises)
Creativity – I’m writing a book, I play the piano, I write screenplays with a friend
Adventure – I travel (looking forward to getting back to that), hike, kayak, try new restaurants, meet new people
And those are just some ways I live by my values even with an autoimmune disease and chronic pain. It took a lot of work to get here though, so be kind and patient with yourself (hey, that’s the value of self-compassion). I hope this helps you to make the most of it!
How many times have you said, “I am sick” or “I am a Spoonie” or “I am in pain” or “I am depressed,” and so on? And how often do you feel that is really so? That is what you are? If your answers to one or both of those questions is “a lot,” then know you are likely not the only one answering that way. I rarely use those phrases for myself anymore because I find them unhelpful, but before you run away I want to explain why they are unhelpful. Not just from my perspective from my lived experience, but also what theories in Acceptance and Commitment Therapy (ACT) and related research suggests, particularly when it comes to chronic illness.
First I think I need to introduce you to a few terms. The first is event centrality. This can be described as the degree to which a person perceives an event (often traumatic but can also work for being diagnosed with an illness) as central to their identity. In other words, being a sick person is who you are because of your diagnosis. The second concept is the conceptualized self. This refers to who we think we are (in fancy ACT terms we call this self-as-content). The conceptualized self can take on all the identities we have such as being son or daughter, a parent, a spouse, a friend, and of course a sick person. It also includes our self-evaluations, so whether we describe ourselves as smart or dumb, happy or sad, fun or boring, and so on. What sometimes happens is that we get fused with one (or a few) of these aspects of our identity. In other words, we hold it tightly, are attached to it, and in the long-run doing so usually causes us more problems.
Now this attachment to the conceptualized self can happen to anyone, and we often see it in depression and anxiety as well as chronic illness and chronic pain. There has been some research suggesting that our illness self-concept is a predictor of our adjustment to chronic illness. When we are attached to the identity of being ill we tend to have a lower overall quality of life. I talked about the use of language once on the podcast, and you should listen to that episode if you haven’t already. I want you to think about these pairs of phrases:
“I am anxious” vs. “I am experiencing the feelings of anxiety.”
“I am depressed” vs. “I am experiencing the feelings of sadness”
“I am sick” vs. “I am experiencing the symptoms of lupus” (or whatever illness you have)
“I am in pain” vs. “I am experiencing uncomfortable sensations”
You’ll likely notice that you attachment to that identity changes. And when we aren’t overly attached we actually can take better care of ourselves (health behaviours, self-caring, etc.) and our quality of life improves because we find we are able to do more values-based activities that we enjoy (yep, even with illness and pain). When we remove the attachment to our conceptualized self we are more willing to allow our experiences and see them as passing.
There’s a few ways we can learn to do this. First, we can just start to notice and name are thoughts and feelings – “I notice I’m having the feeling of an uncomfortable shooting sensation in my hip” or “I notice I’m having the thought that I’m always in pain.” There are tons of ways to create some space between us and our thoughts and feelings when we are attached to them. This is just one way. The other process we can use to change this attachment to the conceptualized self is to develop self-as-context. This is what is also referred to as the noticing self. The part of us that just watches and notices all our experiences: what see, hear, smell, taste, touch, think, feel, do, etc. It’s a part of us that never changes. It’s like the sky and all of the thoughts and feelings and sensations are like the weather. The sky sees the weather but the weather cannot hurt the sky. And if you go above the clouds, the sky is still there, even when it can’t be seen. I’m going to encourage you to follow along with the video below to get an idea of what it is like to experience the noticing self.
I personally find this really helpful (and so do many of my clients) in creating a new relationship with my thoughts, feelings, and sensations, and forging out new identity, where I’m not limited by any of these things because I can notice them. They are not me. I am not chronically ill, I have the experience of having a chronic illness.
Option A: you never have to feel pain again. No physical pain. No sadness. No anxiety. No guilt, fear, or anger. But… you can also never feel physical relaxation. No joy. No happiness. No love, pride, or serenity.
Option B: you still have to feel pain, both physical and emotion. But you also get to feel relaxation, joy, happiness, love, pride, serenity, etc.
What do you choose?
I know Option A is super tempting, but I’ve found that most people choose option B, because no one wants to permanently get rid of the things that make us feel “good.”
When it comes to pain – and throughout this post when I refer to pain, I mean both physical and emotional – we tend to try to block it or avoid it at all costs. Literally, people will drink alcohol, take illicit drugs, take prescription drugs and over-the-counter drugs, mindlessly scroll on their phones for hours, and so on, just to avoid or get rid of the uncomfortable things we really don’t like to feel. Here’s the problem: when we do this it tends to make all the pain much, much worse. (And yes, there has been a TON of research done on this).
PAIN X RESISTANCE = SUFFERING
This formula has been said by meditation teachers, such as Shinzen Young, psychologists, such as Tara Brach (who is also a meditation teacher), and researchers, such as Kristin Neff. And I’ve found both personally and through my work as a therapist, that it’s true. I’m literally in more pain when I resist it, avoid it, distract from it, push it away. And when I just let it be, I’m okay. This morning I woke up with so much anxiety. Anxiety about finances, anxiety about work, anxiety about my life and things I could have done. At first I did try to resist it. I instinctively grabbed my phone and scrolled. I decided I wasn’t going to have a workout and that I’d eat an extra waffle for breakfast while I watched YouTube videos about horror movies. But none of that made my anxiety go away…
Here’s the thing about emotional pain specifically, it can actually lead to several additional problems (or increase the intensity of them if you already have them):
Increase risk of heart disease
Autoimmune Disease Flares
We experience all types of pain for a reason. If we didn’t need our emotions (both the ones we like and dislike) and if we didn’t need physical pain, then we would have evolved without them. Our ancient ancestors needed them to stay alive. To protect us from life and death danger. To keep us safe. Instinctually, our brain and bodies still try to keep us alive the same way, it’s just that we encounter a lot less life and death situations now. And yes, all this applies to chronic pain too. Our bodies are telling us something is wrong, it’s just often not what we think. We think it’s telling us to stay in bed and not move and give in or up on all that’s important to us. In reality, it’s often telling us that we might need to stretch and move our bodies. To do something meaningful with our day – not as distraction but as a way to bring meaning and value to our lives.
…This morning when I decided that I was done resisting my emotional pain, I sat down to meditate. I did my full 20 minutes (meaningful activity) and then I went for an hour walk (moving my body, and a meaningful activity). Then I did my workout that I had put off from the morning. I didn’t do all of this with the intention of distracting myself from my pain (emotional or physical) but to make room for it. I used some practices that I help my clients use to: like observing my pain, breathing into it, expanding around it, and just allowing it to be there WHILE I did things that were important to me. Guess what happened? Not only did it no longer control me, but it actually lessened a lot – to the point where it’s barely noticeable. I also noticed that my drive and creativity and all these things that I’ve been lacking lately came back full force. My suggestion to all of you is to make room for your pain, just to help you make the most of it.
Here’s how I see it: in my life there are things that are out of my control. No matter what I do, I cannot change them. And then there are things in my life that are totally within my control, and I do what I can to change them. Seems pretty simple, right? Well, yes and no. There is this concept in psychology called ‘locus of control’ that has been vigorously studied. It basically describes how people make sense of different influences on their life. There are two types of locus of control. The first is internal, in which we believe what happens to us is caused by our own actions. The second is external, in which we believe that what happens to us is caused by outside forces. Would you believe that having a high internal locus of control is helpful? Especially for those of us with chronic illness or pain? Well, that’s what the research says…
There have been a ton of studies showing that people with high internal locus of control tend to have better health habits overall, are more likely to be screened and tested for health conditions, and actually have better mental health after being diagnosed with an illness. Janowski et al. (2013) found this was the case across chronic health conditions in their study. According to a study by Brown et al. (2018), people with high external locus of control have a lower quality of life, in their study on cancer patients. The great thing is, this is information we can utilize to make our lives better with our chronic illnesses. But how, you might ask?
I want you to take a moment and ask these questions to yourself. What do I have most control over in my life? What do I have the least control over? We often focus on things that are not in our control, such as the behaviour of others, actually getting an illness, and our difficult thoughts and feelings that are associated with all of this (and are an important part of being human). When we focus on these things we end up feeling helpless, hopeless, angry, anxious, guilty, sad, and so on (the struggle switch). We get stuck on these stories of “if I wasn’t sick my life would be good” or “my life will be great when I’m not in pain anymore, and will be miserable until that day comes.” This is common when you have an illness or a severe injury (like a concussion for example). The problem is, we don’t know if or when we will ever be without our illness or pain or injury, etc.
What we can do instead is start focusing our time and energy on what is in our control, such as our actions/behaviours/whatever you want to call it. Self-empowerment is one of those now almost silly terms that was hijacked by the self-help life coach world, but essentially, having a high internal locus of control and then taking control of what we can is the epitome of self-empowerment. The better health behaviours we have = the better quality of life we have (even with illness and pain).
What can we do to take control?
Unhook from our difficult thoughts and feelings – try this or this.
Connect with our values to determine how we want to act even with the challenges that we face – listen to this.
Take action, behaving like the sort of person we want to be, so that we can live the sort of life we want to live – listen to this.
If you currently have a high external locus of control and a low internal one, this switch might be difficult to do. You may need the extra support of a psychotherapist/counsellor, and you will definitely want to give yourself patience, time, and kindness. We all have the opportunity to live a great life, regardless of our health status, so let’s see if this helps us make the most of it!
When I moved across the province at the end of October, I did NOT do a good job pacing myself. Granted I had help for the physical moving but not the packing or unpacking or the putting together of furniture – that was all on me. I started out with the best intentions. I actually started packing by pacing. It was more the last minute stuff, the physically carrying items in the truck, and then everything after that was a disaster. And of course, that caused a flare (luckily it only lasted a week or so). However, that’s not what I normally do. Normally I pace myself, which is part of the reason why I can consistently be as active as I am.
What is pacing? Pacing is doing the same amount of activity everyday – whether it’s a “good” day or “bad” day. Now, this doesn’t mean you’re not listening to your body. There are of course days that Chronic Illness Warriors are going to need more rest. What it does mean is not over-exerting yourself on the good days and therefore creating more bad days. For example, I go for a walk everyday. It’s about an hour long. Even on days where I feel a bit more tired, I get my walk in. I also try to do some yin yoga everyday. It’s definitely movement that is easy to get in on days I don’t feel as good, because it is slower movements and stretching. But let’s say that I didn’t go for a walk today. Maybe I cleaned the house and did laundry instead. It’s about the same amount of activity – and maybe it’s more necessary or I have the thought that it’s more reasonable, depending on how I feel. Get what I mean?
There is A LOT of evidence that pacing works. Not just for me, but from other chronic pain and illness warriors. I’ve interviewed a ton of people on my podcast and have noticed that many of them use pacing. I attended the World Pain Summit earlier in the fall and 2 of the presenters, who were both people with lived experience (not healthcare professionals) talked about pacing and how it’s helped them. Heck even look at these search results on Google Scholar and you can see all the academic journal articles written on the subject. Pacing works – even with fatigue.
But how do you figure out what your pace is? Here are some key suggestions when it comes to pacing:
Plan your day. We all have an idea of how we’re feeling when we get up in the morning, so having a plan of what sounds manageable for the day is a good place to start.
Break up your activities and alternate at rest. For example, if you decide to clean the house, just do 1 room at a time and take a short break (30 minutes) in between.
Prioritizing your activities. I align this with Values-Based Living. What is most important for me to do today? Why is it important? For me, my health is important (yes, even having a chronic illness) so doing some kind of movement that will keep me active and ultimately decrease pain (I’ve done many posts on movement for pain management) is essential.
Even if you’re having thoughts that pacing seems impossible, just note that those are just thoughts. There are many people who can help you get started with pacing (occupational therapists, psychotherapists/counsellors, physical therapists, etc.) and the whole point is to improve your well-being so you can keep making the most of it!
When you have a chronic illness, there is always something that is the matter with yourself. I have chronic pain every day, throughout the day, that ranges in intensity from a 1 to an 8 (though it rarely gets to an 8 nowadays). I can get tired easily, have the occasional brain fog. All that kind of stuff that comes with having UCTD and fibro. I also have to wear glasses or contacts, and not use cold medications when I have a cold because of my glaucoma. But I feel like I have choices. Give in to all of this stuff that is “the matter with me” or do what matters to me. I’m not saying that this is always an easy choice to make, and sometimes we do have to “give in” in the sense that we have to have balance where we take care of our needs, though I posit that doesn’t necessarily mean fully giving up on what matters to you.
What this is called is values-based living. You’ve probably read this on this blog before, and heard about it on the podcast if you listen to that too. It really has two parts. First, values. Second, committed action, which yes, even as Spoonies we can do (it’s about allocating the spoons wisely if you like that metaphor). I read a post in a Facebook group recently about someone asking how others with autoimmune diseases manage to go on vacations. They had recently gone on a weekend trip with family and really struggled. I replied that I have gone on trips with my family (Europe), friends (NYC, Europe, Costa Rica), and 2 solo trips (LA, Vancouver), since being diagnosed. Travelling, and adventure/exploration are part of my values, so I’m not letting my illness dictate this part of my life. However, I do plan appropriately, alternate high activity days with low activity days (think going ATV-ing one day, and then lying on the beach the next), and I only go with people who are considerate about my illnesses. But let’s back up for a minute.
We need to start by clarifying our values. “Values are words that describe how we want to behave in this moment and on an ongoing basis. In other words, values are your heart’s deepest desires for how you want to behave – how you want to treat yourself, others, and the world around you.” (Russ Harris, ACT Made Simple). I have many values including compassion/self-compassion, trust, loyalty, health (I know that may sound weird to say considering my health conditions, but taking control of them as much as I can falls into this for me), and so on. There are lots of ways to figure out your values. I often give my clients values checklists with a list of ideas. You can also think about your character strengths:
what strengths and qualities do you already have?
which ones would you like to have?
what does all of this tell you about what is important to you?
I also like the magic wand question:
Let’s say I have a magic wand and when I wave it all of your painful thoughts, feelings, memories, and sensations stop being a problem for you. What would you do with your life?
What would you start, stop, do more of or do less of?
How would you behave differently?
How would others know (i.e., what would we see and hear) that things were different for you?
Once you figure out what’s important to you, you can move on to the committed action piece of the puzzle – doing what is important. “Committed action means taking effective action, guided and motivated by values. This includes physical action and psychological action. Committed action implies flexible action: readily adapting to the challenges of the situation and either persisting with or changing behaviour as required. In other words, doing what it takes to effectively live by your values.” (Russ Harris, ACT Made Simple). I think the last part of this – the flexible action part – is really important for Chronic Illness Warriors. There are often ways we can adapt in order to live by our values, sometimes we just have to be creative. Some of this action might actually be uncomfortable for you, at least at first. It might challenge your thoughts and feelings about your illness, perhaps even your sensations. When I was in LA on my solo trip, I decided to take a surfing lesson because I had always dreamed of doing so. Surfing is super hard! And I wasn’t very good (granted it was just one lesson) and I hit the ground under the water so many times. It was such a challenge to keep going and I was super sore after. But… it was worth it. It falls into my values (adventure, challenge) and while I may not be super keen to jump on it again (I declined taking a lesson in Costa Rica) I’m so glad I did it, and yes, it was worth being sore and tired afterwards.
How will this improve your wellbeing? Feelings of accomplishment, of doing what we love to do, and keep busy with activities that engage in our values have been shown to be helpful for our mental health. And a lot of research in this area has been done with chronic illness and chronic pain. I’m not saying it’s easy, but it is worth it.
Keep making the most of it everyone!
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