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!
How much time do you spend thinking about your pain or illness? Does it consume most of your day? Just a little bit? I remember the time when I was spending a lot of time thinking about being in pain, and wondering “why me” or what my life would be like going forward etc. These are often referred to as chronicity thoughts. Happily, this was the past for me and is not my experience anymore. I know that many of you may be having this as your current experience though, so I wanted to take sometime to talk about it.
First of all, I want to say that this is a totally normal experience for anyone with chronic pain or a chronic illness. Our minds are literally trying to help us (or they think they are trying to help us, which is what they evolved to do). The problem is, this kind of constant thinking about pain makes our lives worse, not better. There are three types of common chronicity thoughts: (1) ruminating about being in pain/sick – I keep thinking about it, it’s all I can think about because it hurts; (2) magnifying our pain/illness – it will get worse, something terrible is going to happen; and (3) thoughts of helplessness – nothing I do makes it better, nothing I can do will ever make it better.
If you went to a doctor (Western or functional) or a therapist, they’d likely assess this with a tool called The Pain Catastrophizing Scale (PCS). My commentary is that I don’t like the name because “catastrophizing” sometimes has the connotation that it’s all in your head, but that’s not what it means in this case – it’s really referring to chronicity thoughts. The questions on the scale include:
I worry all the time about whether the pain will end
I feel I can’t go on
It’s terrible and I never think it’s going to get any better.
I wonder whether something serious will happen.
and so (there are 13 questions total, and you self-report on a scale of 0-4 for each question, with 0 meaning not at all and 4 meaning all the time.)
So what can we do about all these chronicity thoughts? First, I will always suggest that working with a therapist is the way to go. Remember this blog is educational and not mental health/medical advice. We all have unique situations and unique thoughts, so having someone you can work with one-on-one (or in a small group) is always the way to go. I will let you know about a few different approaches. First, let’s talk about classic Cognitive Behavioural Therapy approach, where we challenge thoughts.
Notice and name the thought: I’m having the thought that “It’s terrible and I never think it’s going to get any better.”
Review evidence for and against the thought: For might include things like, it occurs frequently, has high intensity, a doctor’s prognosis, etc. Against might be things like, there are times of day when I don’t notice it or it’s less intense or my doctor said with this medication or these lifestyle changes it will improve
Replace the thought with a more accurate one: This doesn’t mean being optimistic or denying anything that’s true. Instead it’s incorporating the evidence against the thought (not just for the thought which is what we tend to do). So a different thought might be: “It’s really unpleasant right now, but it might not always be this bad/constant.” (You choose a thought that works for you, this is just what might work for me.)
As a therapist, I am well-trained in CBT but I prefer to use Acceptance and Commitment Therapy (ACT) on myself and with clients, especially those with chronic pain/illness. There is no step-by-step way to challenge thoughts in ACT because we don’t challenge them, but here’s now I might work with them.
Contact the present moment: ground myself my noticing and acknowledging my thoughts and feelings, while noticing what I can touch, taste, smell, hear, and see. (Here’s a guided version of this).
Creating distance between myself and my thoughts: This might be noticing and naming the thought. It might be reminding myself that my brain is just trying to help me and saying “thank you mind.” This might be just watching my thoughts come and stay and go in their own time (guided version of this one is here).
Accepting my experiences: particularly physical and emotional pain that I might be going through. This could be actual sensations or emotions such as sadness or anxiety. For this I often just observe what the sensation/emotion looks like, where it is in my body, and so on. Then I send my breathe into the part of my body I feel it most intensely. Then I make some room for it, noticing that my body is bigger than it. Finally, I just allow it to be there without consuming me. (Guided version here).
I connect with my values: what qualities of being are important to me? I know that compassion (for myself and others) is a big one that is often helpful in moments of pain, sadness, anxiety, etc. (Here’s an exercise on connecting with your values.)
Taking an action to live by my values: So if we’re going with my above example/value than it might be doing some self-compassion work. (Here’s a guided practice). It could also be setting goals to make some of those lifestyle changes that might help. It doesn’t matter what the action is as long as it is rooted in your values. (podcast episode on how to do this available here).
So that’s it. A bunch of different ways to work with your chronicity thoughts so that hopefully you can improve your life and keep making the most of it!
A lot of people struggle with boundary setting in their relationships. I often see people complain that their family members don’t treat them well, that their spouses don’t, and it seems all the worse for people with chronic illnesses. And actually, that is part of what Gabor Mate says in When the Body Says No. Boundary issues are common within families, and perhaps are part of the “social” part of the biopsychosocial aspect of disease.
And look, I’ve been there. Though I have good boundaries with my family members, it’s often because I set them. For example, I tend to not talk politics with some of my family because our differences in views were causing me stress (and stress is bad for chronic illness!). I do sometimes still struggle in romantic relationships and friendships. Setting a boundary means being assertive, and sometimes that pisses other people off, especially if they’ve gotten a way with violating that boundary for a long time. As chronic illness warriors we need to get good at setting boundaries as part of our self-care. Here is one way of thinking of boundary setting.
Imagine that you are a castle, and the boundary is the personal space that you are placing between yourself and other people. The walls of the castle show that personal space. The moat lets other people know how close they can get to you, and in this case it can change size depending on the person and/or situation. The draw bridge itself is what allows people to get in, and keeps people out. This draw bridge helps us to feel secure. The castle guards are the actual skills we have to protect our boundaries. They can also help us when someone crosses our boundaries. And it’s important to remember that boundaries can be verbal, physical, emotional or spiritual.
So how do we exactly do this? Well, short answer is to say no, resolve conflicts, follow our values, be assertive, and express our needs. But that is easier said than done. Saying no and being assertive both require practice, and if we’re nice (which most of us with chronic illness apparently are), it’s super difficult to do these two things. If you have a therapist, then that might be where you practice these skills. Otherwise, it’s easiest to start with boundaries that aren’t going to upset the other party as much. The other pieces of this: resolving conflicts, following our values and expressing our needs can be handled with some self-exploration, by answering the following questions for ourselves:
Who are the most important people in my life?
Who is there for me when I’m struggling?
What are these above relationships like for me?
What are the positive things I get from this other person?
What are the negative things this other person says or does? And how does that affect me?
What do I want to get? And what am I willing to give?
What have I tried already in regards to boundary setting and how has this worked for me?
Once we’ve done this, we have three options:
Leave or end the relationship.
Stay and live by our values: change what we can (remembering that we can’t change other people’s behaviour) and make some room for things that we may not like (that aren’t in dire need to change)
Stay and give up acting effectively – which is all to common an occurrence
The more you practice setting boundaries, the easier it will be. It will also start to reduce your stress, which means you may start to see an improvement in your symptoms (be it physical or mental health), and are more likely to improve your well-being. Let’s keep making the most of it everyone!
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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This isn’t the first time I’ve posted about resiliency on this blog. The truth is, it’s a topic that comes up often. I see it on online support groups, on Instagram, and hear it in conversation with people. I also read it on other blogs, and many healthcare organizations post about it on their sites. Here’s the thing, if you have a chronic illness and you’re not feeling resilient, just know that you are not alone. A lot of people feel that way. Are people born resilient or do we develop resilience? I think it’s an interesting question and possibly a bit of both. Children tend to be more resilient than adults, suggesting we can lose some resilience as we age. In one of my courses for my graduate degree we had to more-or-less do a family tree. Except this family tree was supposed to trace something like a mental health or substance use issue. I chose to trace resilience, and found that going back just to my grandparents generation (that was the requirements for the project) there was a strong theme of resilience (my maternal grandmother/baba faced abuse, neglect, lost 2 children, and she and my mother were trapped in Siberia for a week during the Cold War – I know it sounds too crazy to be true). Yet she not only survived but was a loving parent to her other children and an amazing grandparent. Had my mom not shared my baba’s history I would not have know. She was that resilient.
The good thing is, that even people with chronic illness can develop resilience. Warning: it does require work on your part. Luckily, some of the work may not feel like work at all… it just requires consistent commitment to it. I want to add, that many of these suggestions overlap with what the National MS Society suggests, in case you don’t want to just take my word for it.
finding meaning and committing to that action: what is the reason you get out of bed in the morning? If you don’t have a reason it will be difficult to do so. Is it your family? Or work? I know a lot of people with chronic illness go on disability, but work provides meaning and purpose for people. If you are on disability what is your purpose going to be instead?
improvisation/adaptability/problem solving: I think these all kind of overlap and go together. We often have to improvise in order to do things we enjoy. Maybe we can’t go on the 5k walk with our friends, but we could meet them for coffee afterwards. How flexible and adaptable are you to changing plans? Or asking others to? What’s an alternative way you can participate or do the things you like to do? I would go as far to make a list of ideas (remember when brainstorming there is no such thing as a dumb idea) and try out some to see if they work.
Self-care: we all know I love self-care, and this includes the basics (getting out of bed, making breakfast, taking a shower) and then doing activities like relaxation techniques, yoga, meditation, or prayer. What hobbies do you enjoy that you can participate in? Pick one a day. Reading is an example of something that is low energy and can be fulfiling.
Being able to tolerate “negative” emotions: I personally don’t categorize emotions as negative or positive. All emotions are important because they tell us very important things. If you’re not used to be able to just sit with emotions, try out this mindfulness practice that aims at helping people do just that.
Self-efficacy: I did a post on this recently, and you can read it here. Do you believe you can cope with your illness? Part of this is being a realistic optimist, being hopeful.
Using skills such as curiosity and humour: When is the last time you laughed? Are you able to have fun and joke around (and not in a self-deprecating way)? Do you get curious about your situation or feelings or sensations or emotions? What are you noticing about them right now as you read this? The noticing self is a helpful skill to develop. We touch on it in this podcast episode (about half way through).
Radical acceptance: This is a skill from Dialectical Behaviour Therapy (DBT) and essentially the same used in Acceptance and Commitment Therapy (ACT). It is about fully accepting your situation/thoughts/feelings/sensations/etc. Fully. Accepting. It doesn’t mean you have to like it. It’s hard to do a lot of the above without this kind of acceptance.
I hope this helps give you some ideas for building resilience some more. Well-being and a good quality of life do require us to be resilient, and trust me, it is possible even with chronic illness. Here’s the link to the MS Society page on resilience. Take care, and keep making the most of it!
Depression is one of the most common mental health problems (right up there with anxiety). It also commonly co-occurs with chronic illnesses. If you’re feeling depressed, or have been diagnosed with Major Depressive Disorder, it’s really important you are treating it in some form. As a therapist-in-training, I see many clients with depression – some with both depression and anxiety, some with perinatal depression, some with depression and chronic illness – and there are a lot of evidence-based treatments out there. It’s really important to know that you don’t have to suffer alone. So I thought this week, we’d talk about some common treatments, and some up-and-coming ones for depression. I also have an entire podcast episode dedicated to depression and chronic illness this week, which you can access here.
For chronic illness, depression most frequently occurs in people with Alzheimer’s, autoimmune diseases of all sorts, cancer, coronary heart disease, diabetes, epilepsy, HIV/AIDS, hypothyroidism, and Parkinson’s. I got into the criteria for major depressive disorder in the podcast episode, so definitely check that out for more information. When it comes to treating depression, the two most common routes are anti-depressant medications and psychotherapy. Anti-depressants most commonly come in the form of SSRIs (selective serotonin reuptake inhibitors) that alter our brain chemistry because it is implicated in depression (our brains are not the only thing that is implicated though). There is a lot of research that supports anti-depressants in treating depression, though research also shows that it works as well as a placebo. In other words, if you believe it will help it will. Now don’t get me wrong, I fully support someone taking medication (unless you’re pregnant or breast-feeding and can’t – thus why I see many perinatal moms in my practice), however what a lot of people find is that just taking medication isn’t enough to see significant improvements in their symptoms, and many people don’t want to rely on medication forever.
That’s where option 2 comes in: psychotherapy. As a student, I see about 10 clients a week plus I co-facilitate a group for 2 hours a week. There is a lot of research that supports the use of psychotherapy. My podcast episode on anxiety, which you can access here, breaks down how much your therapist and you each contribute to your outcomes in therapy, which is important to know. As for what type of therapy, there are many to choose from and they all have good outcomes. CBT (cognitive-behavioural therapy) and it’s third-wave counterparts (DBT, ACT, SFT, etc) are the most common. Typically this involves a combination of talk therapy, where you tell your therapist about your thoughts and feelings, and then the therapist giving you some things to try out in session that you can also practice between sessions (some people call it “homework” but I don’t like that term). Another option for therapy is psychodynamic, which involves talk therapy plus the therapist often makes interpretations. And then there are the therapies that rely mostly on talk, utilizing the therapeutic relationship, such as person-centred, existential, etc. All of these can help and are something I highly recommend. There is also evidence that different lengths of therapy are beneficial as well, from one session of drop-in counselling to short-term (10-20 sessions) of CBT or long-term (more than 20 sessions) of person-centred therapy.
If you are in immediate crisis because of self-harm, abuse, trauma, and suicidal thoughts/plans, then please contact your local help line. I’ve put some numbers in the show notes for my podcast on depression. A quick Google search can help you find them in your country. If you don’t like talking on the phone, there are some organization that offer texting services. I volunteered for Kids Help Phone in Canada which had switched to primarily a texting hotline since many young people prefer to text. You are strong for reaching out because it is not easy to.
In terms of other treatments, a few are available for treatment-resistant and severe depression. Electroconvulsive therapy (ECT), which used to be called “shock therapy” can be helpful for people with severe depression, though there are some potential harmful side effects, and psychiatrists don’t commonly use this unless necessary. Transcranial Magnetic Stimulation (TMS) is another option for treatment-resistant depression where magnetic pulses stimulate the nerves in your brain. Newly approved in Canada (and how I got the idea for this post) is the use of Ketamine for treatment-resistant depression. Ketamine is a dissociative drug that has a lot of research supporting its use for depression. It activates your glutamate, dopamine and serotonin receptors in your brain. It takes effect much quicker than anti-depressants and has shown to decrease suicidal ideation. So far research shows no long-term side-effects, though because it is a psychedelic drug, there is the chance of substance dependency.
Whether or not you have chronic illness, if you have depression there is hope for recovery, and lots of options available. Talk to your GP, your psychiatrist, a psychotherapist or whomever else is or could be part of your mental health care team. That way, you can keep making the most of it.