Pain – both physical and emotional – are parts of life. They are also inevitable with chronic illness and chronic pain syndromes. The more we try to fight or resist our pain, the more it comes at us. So, let’s talk about why that is and what to do about it. Because, really, we can’t keep making the most of it if we struggle. Check out this podcast episode for more about this.
I’m going to be right upfront and say it, we do not treat ourselves as kindly as we treat other people. I’ll also admit that as much as I’ve worked on self-compassion over 4 years of going to therapy, and a 2.5 year master’s program to become a therapist, I still have moments where I don’t talk to myself kindly. But it has dramatically improved for me. People with chronic illness and/or chronic pain tend to be even less kind to themselves than other people, and those other people struggle a lot too. Think about your latest self-judgment or self-criticism. Just take a moment to get it. Now imagine you have this friend, Friend A, and he/she/they started to call you that judgment or criticism or label and said you’ll never change that’s just who you are. Now imagine Friend B, and this friend says to you, hey, I noticed you’re having a really hard time right now and going through all this difficult/painful stuff, and I just want to be here for you. Which friend would you rather have? I’m guessing you said Friend B, so think about whether or not you’re friend B to yourself.
If that brought up some emotion I’m not surprised. So let’s talk about self-compassion (or just kindness or friendliness if you don’t like the term self-compassion). According to Kristin Neff, the world’s leading researcher on it, self-compassion is made up of three parts.
Mindfulness, which includes being present with our thoughts and feelings.
Kindness, or acting with care and understanding opposed to judgment.
Common Humanity, or acknowledging that all human suffer.
Kristin Neff also talks about some common blocks to self-compassion. And that’s what I want to talk about here. Because asking you, why aren’t you kinder to yourself, probably brought up something from this list, or a general, “I don’t know.” So let’s just address these now, in the context of chronic pain/illness.
Block 1: “It’s a sign of being weak.” I can see how you got there, especially if you’re a male (because let’s faced it boys are socialized to believe emotions and compassion make them weak or girly). The research actually shows that people who are kind to themselves have more internal strength, better coping, and are more resilience. This includes if you have chronic illness or pain. This is so important for being able to live a good life when you have chronic illness/pain.
Block 2: “I’m being selfish.” I’ve actually had a client say this to me before as a reason not to engage in self-kindness. This is another thought that isn’t compatible with the research, because what the research shows is that people who are self-compassionate are more compassionate to other, are more supportive of others, engage in more forgiveness, and are better at taking the perspectives of others. This is especially important if you have a chronic illness/pain and are also a partner or parent or caregiver. I have to say that as a therapist, practicing self-compassion has made me so good at building rapport with my clients because they feel more compassion coming from me.
Block 3: “I’m being self-indulgent.” This implies that you’re using it as an excuse not to do hard things. And yet, what does the research show? People who are self-compassionate actually engage in more healthy behaviours. For chronic illness/pain this means they exercise more, have better nutrition, and regularly attend doctor’s appointments and follow doctor’s advice (podcast on that here). All of this has been shown time and time again to improve people’s lives when they have an illness.
Block 4: “I won’t be as motivated.” I think this goes hand-in-hand with the last one, where you think you’ll just sit back and chill if you’re kind to yourself. Notice I said kind and not easy, because there’s a difference. Regardless, what does the research show this time? It increases our motivation. Why? Because we have less fear of failure AND get less upset when we do fail, and we take more responsibility when it comes to repairing our mistakes. Which means if you’ve struggled with certain parts of your illness before, you will be more motivated to fix them/do better in the future.
Where do we start with self-compassion? I’m going to leave these three meditations: lovingkindness, kind hand, and compassion with equanimity here. But if you don’t like meditation, that’s okay it’s not necessary. My favourite way to easily engage it in is to just take one of my hand, imagine it’s filled with kindness, the same that I’d give a loved one, and place it on the part of my body (usually my chest) that needs it the most. And I just hold myself kindly (sometimes with a half smile). That’s it.
I hope you’re kinder to yourself and keep making the most of it.
This week’s mindfulness activity is a guided meditation that uses imagery of light to help us centre, ground, and sometimes it can even be relaxing. Notice what comes up for you while you do this practice. For more guided meditations, subscribe to my YouTube channel.
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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!
In this practice we are working on developing the “noticing self,” “observer self,” “self-as-context,” or whatever you would like to call the part of you that notices everything. Many people find this type of awareness to be very beneficial in many areas of their lives. This was adapted from Russ Harris’ ACT made simple. The noticing self is something that I have found to be very important in my own life, and in the lives of my clients.
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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I think that I sometimes give off the impression that I’m 100% fine 100% of the time, which as anyone with a chronic illness or dealing with chronic pain knows, is simply not true. What is true, is that I’ve learned several strategies over the past 5 years to improve my well-being, even on my days of struggle. Let’s take this morning (Saturday) as a write this. I had some pain in my hips (both of them). I live alone and needed groceries and don’t have a car, so I walked to the grocery store. My arms killed on the way home because I accidentally bought more than I could carry. Then the apartment building door whacked my right hip (the less sore of the two) which obviously caused more pain. And then I became angry. Like swearing, yelling, grumbling, angry. I got text messages and was annoyed at the people texting me even though they weren’t saying anything bad. Then I noticed what was happening. Was this anger helpful? No, if anything it was making my pain worse. So I took a moment, watched my breath flow in and out of my body, and calmed down mentally… and then it helped my body to calm down physically.
So… who am I? I’m Kelsey. I’m a person with lived experience. I have diagnoses of undifferentiated connective tissue disease, fibromyalgia, and glaucoma. I’m also someone who meditates daily (over 100 days in a row – my longest streak). I’m someone who has bad days, and good days. I make it my priority to have way more good days than bad ones. I’m a person who went to psychotherapy among other treatments (physio, chiropractor, naturopath, massage, etc.) and found it helpful for my anxiety and ultimately my pain. And then I became someone who went back to school to get my Masters in Counselling psychology, which I have now completed, despite the fact that I was working full time and in pain. I am someone who is committed to helping others who are struggling. And I am someone who wants to share what I’ve learned – and what I’m still learning – with all of you. I am me.
Why should you listen to what I have to say? Well, there is no particular reason and it’s completely up to you! What I can say, is that I try to bring my personal, lived experience, with research (yes I actually do a ton of reading of scholarly journal articles for my posts) and clinical experience so provide you all with different ways to improve your well-being. Take me this morning for example. Would it have been helpful to stay angry all day? Likely I would’ve had to spend it in bed and probably wouldn’t have written this post. I’ve found this to be helpful for me, so it just might be helpful for you. Along with this blog, I have other resources too. Like my podcast and YouTube channel, which you should definitely check out if you haven’t yet.
Okay, so I thought we’d end on a fun note. Two truths and a lie. I’d love to hear in the comments which one you think is a lie. 1. I have spent the evening hanging out with a celebrity. 2. I recently got a new puppy. 3. Pineapple is my favourite fruit.
My podcast topic this week was utilizing your authentic self, and next week is about evidence based treatments for chronic pain. My YouTube channel has a new video for building self-awareness (which is how I knew to calm myself this morning!). Until next week, keep making the most of it!
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No, we’re not talking about Cher from Clueless (did I date myself?). We’re talking about Alfred Adler, who was an early psychoanalyst, and whose work has contributed to the development of current psychotherapeutic techniques, including Cognitive Behavioural Therapy. CBT, it turns out, has been incredibly helpful for people living with chronic pain and illness. One of the many techniques Adler developed was acting “as if” which got me wondering, can this help with chronic illness and pain? I’m going to start off by saying, there is not a lot of research in this area, so we don’t really know, but I’m going to do a bit of theorizing today, with the research that I did manage to find on the subject.
First, let’s maybe determine what acting “as if” means. This technique has the client make up a new story about themselves, their lives, their ability, or whatever else, for themselves and behave in the way that they would need to in order for this story to be true on a daily basis. (If you’re familiar with CBT you might recognize the cognitive and behavioural components here). Initially it was used for things like giving empathic responses, and being more assertive, or making decisions. The idea is, that by acting differently, and getting different responses from other people in your life because of it, your brain changes so that you can be more like this “new” person. I kind of thinking it as a mindset change.
Okay, I have a story before we move on. I was always a very shy person. To the point where I had some social anxiety as a child (literally would never answer questions in class, and was terrified of doing presentations, though I always had friends). That continued right into my twenties. In my twenties (and early thirties) I worked in retail, so naturally some of that social anxiety went away, but to be honest, a good portion stayed. That is, until I was in my early thirties. Then I decided I didn’t want to be so shy anymore. I set myself down a path where I would either be in situations where I couldn’t be as shy, or I would force myself to just talk more in situations I normally wouldn’t. I was essentially acting “as if” I was outgoing. Guess what? At 36, I can say that while I do get some butterflies in new situations, I definitely would not be considered “shy” or “awkward” or “socially anxious” anymore.
But can this apply to chronic illness? And if it does, how exactly does that work? When we’re looking at chronic illness treatment, it’s always best to take a holistic, biopsychosocial approach. Typically, you’ll have a doctor (or team of doctors) that focuses on the biological aspects. Having a mental health care professional can assist with the psychosocial parts. There is a known association between self-efficacy, which is our beliefs about our ability to handle life’s challenges, and chronic illness and chronic pain disability. In other words, if we believe we can’t handle our illness or pain, then we won’t be able to and our illness and pain will actually be worse. This is where I think acting “as if” applies to us. We need to shift our mindset and starting acting “as if” we can handle the pain, we can handle the illness and the symptoms that go along with it. We replace self-pity with self-compassion. We are mindful of what we are doing and saying, and we start to take control of treatment (as holistically as possible). By doing so, our self-efficacy grows, and our pain lessens, and our illness has less control over our lives.
Okay, full stop. I know this might be a lot to take in, and you can’t even necessarily do this work on your own (though depending where you’re at with that self-efficacy thing, maybe you can). This is where having a support team, including a mental health professional might be helpful. At the very least, working on growing that mindfulness muscle and noticing what we’re doing is free to do (here’s the link to my meditation page which can help with that), until you can find (or afford) to have a professional help you. I truly believe in our abilities to live great lives, even with pain and illness. And, so, keep making the most of it.
New season of my podcast, Chronically Living and how to make the most of it, coming June 28, 2021.
This is yin yoga at it’s finest. Contacting the present moment, maybe lucking out with some relaxation but the purpose is to be present. Here’s the link to the 30 Day Yoga Challenge by Timothy Gordon (The Zen Social Worker). I highly recommend checking it out. Check out this podcast episode on mindfulness too. Let me know how this goes in the comments and keep on making the most of it!
When I was first diagnosed with a chronic illness, my mental health started to suffer. I actually tried to hide that, even from myself, but my anxiety increased over the first 7 or 8 months until I started seeing a therapist (and thus my journey to becoming a therapist began). The thing is, I’m not alone as far as my story with my chronic illness taking a toll on my mental health. Many, many chronic illness warriors have been through the same thing. So, if you’re reading this and you’re struggling, know that it is normal and it is okay to struggle. Also note that change is slow. I can give you these 10 ways to improve you mental health (as I did a few weeks ago with physical health) but you aren’t going to feel better overnight, or after the first time you do these. It takes repeated practice and effort on your part (I still practice all of these!). If you’re ready for that commitment then let’s get into it!
Support and Connection – this is pretty much the opposite of isolation, which is common with chronic illness, and mental health issues such as depression and anxiety. Support and connection can come in the form of joining formal support groups (which are likely still mostly online due to the pandemic, but may be in person depending on where you live), or informally by talking with your family and friends, or connecting with others in the Spoonie community via social media. As we’ve seen from the pandemic, isolation is not good for our mental health so do what you can to stay connected. Check out this podcast episode.
2. Mindfulness – I know this comes up a lot but there are many, many studies showing that this has powerful effects on both physical and mental health. It can be formal meditations, but it doesn’t have to be. Mindfulness can be fully engaging in an activity, such as mindful eating or mindful walking. If you’re present you’re unlikely to be ruminating about the past (depression) or worrying about the future (anxiety). Take a listen to this podcast.
3. Assemble your healthcare team – that includes someone to help you with your mental health. If you can’t afford to see someone in private practice, check out community settings. I’m currently doing my internship in a community setting, where our services are free. There is a bit of a longer wait time, and is usually brief/short-term service, but it is definitely a good option for many people. Check out this podcast on depression and this one on anxiety.
4. Use holistic approaches – what I’m talking about here are approaches that utilize the body-mind connection. If you’re lucky you can find several practitioners that do so. For me, my physiotherapist has a BA in psychology so she always takes a body-mind approach (podcast with her here), and I also saw a naturopath before I moved, which is all about the body-mind connection. They can give you more ideas for how to take care of your mental health and understand it interacts with your illness. This podcast is with my naturopath.
5. Get moving – movement, of any type, is helpful not just for your physical health but for your mental health to. There have been studies to show that exercise decreases depression. Even if you’re not super mobile, going for a walk, doing some yin yoga, or taking up Tai Chi (podcast here) are good options to increase those endorphins and other neurotransmitters in your brain.
6. Connect with your values – who and what is important to you? If you can figure that out, then try to brainstorm some ways you can continue to live by your values, even with chronic illness. I’ll give you an example from my life. It is important to me to have adventures. Obviously travel is harder with a chronic illness, but it’s not impossible. So my friend and I (pre-pandemic) went on an “adventure vacation” to Costa Rica and for every “adventure day” we did a “rest day.” Honestly, it worked out super well, and we both felt more mentally and physically healthy that trip then we had in a long time. Check out this podcast.
7. Do what matters – this ties into this above, connecting with your values. Once you have done the brainstorming, it’s important to do the things that matter to you. So for me, it was travel. It might also be spending more time with family and friends, or being creative. Doing the things (what therapists call behavioural activation) actually decreases depression (lots of evidence here). Check out this podcast for more.
8. Find an outlet – this might tie in to doing what matters for you. My main outlet is writing (probably no surprises here), but I have other ones too, such as playing the piano and colouring. I know a lot of people use art or photography or music or dance. It doesn’t necessarily have to be a creative outlet, but creativity can be useful, because a lot like exercise, it gets those helpful brain chemicals to increase.
9. Distance yourself from thoughts, feelings, sensations, etc. that are “hooking” you – what I mean by hooking, is the ones that pull you away from your values, the ones you can’t stop thinking about and make your anxiety/depression/etc worse. If you think of it like fishing, when you cast, and then hook a fish, you immediately start to reel it in, and the fish struggles, flopping around. This is what some thoughts, etc. can to do us – make us struggle and flop around, doing things that are unhelpful. By putting some distance between ourselves and them can help decrease their power (this includes physical sensations of chronic pain).
10. Acceptance – whoa I know this is a big one because no one really wants to accept that they have a chronic illness. And yet this might be the most powerful part of the list for Spoonies. Not just accepting that you have a chronic illness, but allowing your to sit in the physical sensations of pain (without getting “hooked” by them), and allowing yourself to sit in feelings of sadness and anxiousness, etc. These are all adaptive for us. They are part of our evolutionary history. They are here for a reason, and we can learn to allow them to be without it stopping us from doing what matters.
I’m sure I’ve given you a lot to think about, so that’s all from me for this week. Keep on making the most of it!
And don’t forget, the self-care challenge starts for premium members on April 24. If you haven’t signed up yet, it’s just $5 CDN for 4 weeks of posts and check-in around self-care!