When we learn to make room for our difficult emotions, we give ourselves the opportunity to react in different ways. Often with anger we yell, swear, throw things (including punches), etc. and typically don’t act in ways that align with our values. When we make space for anger we can clearly communicate that we are upset without doing any of those things.
I was listening to a podcast a few weeks ago and the guest was talking about the physiology of our fight-flight-freeze response and how it can specifically relate to certain chronic illness. The guest used the following examples: lupus as being the fight response, and CFS/ME as being the freeze response. I had never thought of it this way and it made me interested in this topic. (The podcast is called Therapy Chat if anyone is interested but I can’t remember the specific episode number, sorry!). Fight-flight-freeze is also known as the stress response, which is a product of evolution that kept our species alive for a long time, however, if you ask many people with chronic illnesses (especially autoimmune diseases) you’ll have a lot of people tell you about chronic stress, trauma history, and attachment issues, all of which can dysregulate our stress response. Usually this occurs in childhood, and I can specifically remember 5 years where I had chronic stress (at school only, due to a traumatic friendship).
I’m going to try to explain the stress response in the easiest, most non-technical way possible (because honestly my eyes glaze over when I have to read about brain anatomy, and I’m guessing I’m not alone in that). So there are a few different parts of our autonomic nervous system, most notably the sympathetic nervous system (fight and flight) and our parasympathetic nervous system (freeze). There is also our vagus nerve which is really important in understanding the nervous system but I’ll leave polyvagal theory for another time. Sympathetic activates us to either fight or run away in order to survive, whereas the parasympathetic suppresses everything in order to keep our bodies alive when we can’t fight or flight. The problem is that when our stress response is chronically activated, it can impair our physical and mental health. I want to put a caveat here for the rest of this post, correlation does not mean causation, however, most theories do point to chronic stress as being causation (at least partially – biopsychosocial approach) for a lot of illnesses.
I think it’s also important to talk about stress-related disorders, because they tend to also be diagnosed in people with autoimmune diseases. Examples include acute stress disorders (same symptoms as PTSD but only lasting between 3-30 days), posttraumatic stress disorder (which most people seem to have a basic understanding of), and adjustment disorders (occurs during major life changes). Attachment disorders can also contribute. One study I looked at found that people with a stress-related disorder were more likely to not only develop an autoimmune disease, but to actually be diagnosed with multiple ones, and had a higher rate of them if they were younger when having the stress-related disorder.
Let’s talk about chronic stress – when our stress response is activated for a long period of time (i.e., daily stress as opposed to one major stressor) – because a lot of research has been done in this area. Here is a bunch of things that chronic stress can do:
contribute to high blood pressure
contribute to anxiety, depression, OCD, anorexia nervosa, and substance use disorder (and withdrawal)
contribute to obesity (increase appetite, leading to weight gain)
suppress or dysregulate immune function (leading to inflammatory disorders and hyperactive immune systems such as in RA and lupus)
suppress the reproductive system
suppress growth in children (lots of studies of children in orphanages)
switch off disease-fighting white blood cells, increasing risk of cancer
worsen symptoms in lupus patients
contributes to malnutrition
contributes to poorly controlled diabetes
contributes to hyperthyroidism
So that’s a lot. I mentioned ME/CFS as the beginning of this post as well, which is associated with the physiological state of freeze, as examined by metabolic changes. Some research indicated that people with ME/CFS are “wired,” meaning a combination of both the fight/flight and freeze responses, leading them to feel wired and tired at once. I hope this gives you some understanding of what is going on with you if you have any of the illnesses mentioned in this post. Understanding is one thing, but what can we do to help ourselves, especially if we are in a chronic stress response? While there is no right answer, there are definitely things we can try (and a bunch have worked for me!)
Deep breathing (into the diaphragm) – for many people this lowers stress (it sometimes increases anxiety for me, so I personally find it more effective to do mindful breathing)
visualizations and guided imagery – try this one out.
Prayer – this is a mindful activity that many people find helpful
Yoga and Tai Chi – mindful movement can be very grounding – listen to this podcast episode about it.
Walking (and other forms of exercise) – for many people this lowers the stress response, for some people it can increase it due to heart rate increases
Journaling – you have to like to write/journal for this one but it can be helpful to get your thoughts out of your head
Biofeedback – this is a technique in which you can learn to control some of your bodily functions (i.e., heart rate)
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!
This may seem like an odd topic for a blog about chronic illness and pain, but trust me it’s relevant. The same way you survive quicksand is the same way you can learn to thrive with chronic pain. And no, it’s not an easy process, nor is it something you can learn to do in a few days or weeks, but take it from one warrior that it is possible.
The metaphor and skills are based on Acceptance and Commitment Therapy.
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.
Grounding practices can be so helpful, for pain, for intense emotions. I personally love them and use them all the time with my clients. This grounding practice uses visualization. For more meditations and mindfulness practices, check out my YouTube channel.
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.
Disclaimer: Please consult your appropriate healthcare professionals before making changes to your exercise routine.
This is a new exercise given to me by my physiotherapist that I have found helpful for hip strengthening and pain reduction. What are your favourite hip exercises? As always, keep making the most of it with your exercise routines!
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!