How Can I Become More Resilient?

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.

Three generations of resilience in my family.

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.
My curious, nonjudgmental, accepting, “what am I noticing” face.

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!

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What is Well-Being?

“While it may not be possible for us to cure ourselves or to find someone who can, it is possible for us to heal ourselves – to learn to live with and work with the conditions that present themselves in the present moment. Healing implies the possibility that we can relate differently to illness, disability, even death, as we learn to see with the eyes of wholeness.” – Jon Kabat-Zinn

If you’ve been following my blog (or podcast) for awhile, you might have read (or heard) the term well-being come up quite a bit. Because, like the above quote says, we can’t cure ourselves, but that doesn’t mean everything in our lives is out of our control. The illness(es) we have aren’t directly in our control, but our experience of having them is. This is a lot to break down, certainly more than just one blog post (and to be honest I get into this way more in the new season of the podcast – check out the first episode of season 2 here for Apple and here for Spotify). What I would like to do is just be a little more specific about what well-being is and why’s it is important for Chronic Illness Warriors.

I would say the first year to year and a half after I was diagnosed initially (so back in from Feburary 2016-sometime midway through 2017) my well-being was low. I felt like my illness took so much out of me. Initially I had a lot of anxiety, maybe some depression, and then a bad breakup, and then even when I went out with friends as I moved on I found I would have to leave early or cancel plans. I called in sick often to work. I thought a lot about the pain I was in. But things slowly started to shift as I realized my well-being (or all of this stuff) was more in my control than I thought it was.

Despite the smile, my wellbeing was much lower in June 2016.

Wellbeing (or well-being, which way is right? Depends on who you ask!) can be defined as the state of being comfortable, healthy, or happy. Note that it doesn’t necessarily say all three at once. There is a ton of research on wellbeing and chronic illness, which is not surprising since the incidence of chronic illness is constantly growing. Wellbeing often includes physical, psychological and social aspects, and often it is a little bit of each together that gives us this. It is also related to coping. How well we can cope, how we cope, our self-efficacy (last week’s blog post). Truthfully, wellbeing is an important part of being able to exist and wanting to exist on this planet. Too often I read chronic illness warriors post how they have no wellbeing and that they feel like giving up. It’s heart breaking, because it doesn’t necessarily have to be that way.

Remember, change is slow (April 2017).

Why is well-being important for people with chronic illness. Well, for one, the research has shown that chronic illness warriors who have better wellbeing show lower disability, lower pain, less mental health problems, and overall a better quality of life. Sounds pretty good, right? And please remember that doesn’t mean they don’t have any disability, pain or mental health problems, it means that it is lower than for people who’s well-being is poor. I do want to point out that achieving greater wellbeing takes a lot of work. I’m not exaggerating here either, and I think this is often where people get stuck. Because it’s easier if someone or something else (like a doctor or medication) can just make us feel better, rather than having to make changes to our lifestyle or go on a personal growth journey. This is ultimately why I have the blog and the podcast – to help provide some options here (and again the podcast this season is really diving deep into finding ways to improve wellbeing so check it out). We are looking for ways (myself included because I certainly don’t have all the answers) to improve our wellbeing, to make our lives better.

If I hadn’t worked on my wellbeing I wouldn’t be able to go on the epic adventures that I do.

My journey has been several years in the making and is really never-ending. Change is slow. But I’ve taken many steps to improve my wellbeing and continue to do so. I’m at the point where I can say I have pretty good wellbeing, and I can personally corroborate the research and say that in general my pain is lower (still can depend on the day) and in general I have less disability (have not called in to sick at my practicum in 6 months) and in general I don’t have mental health problems (though I am willing to acknowledge them when they come up because emotions are normal!). It is a journey that I hope you are all ready for.

Wellbeing is a forever journey for a chronic illness warrior.

If you feel moved by my posts, podcast and/or meditation channel, please check out my Patreon page. I love bringing content and by supporting it you are making sure that I can cover the costs of running it all so that I can keep bringing it to you. Until next week, keep making the most of it!

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How Can I Improve My Self-Efficacy with My Chronic Illness?

Back in the summer and fall of 2016 I wondered how much I would be able to accomplish in my life. Can I even manage through the situation I’m in? Particularly with my physical health, having recently been diagnosed with an autoimmune disease, and then the mental health consequences (mainly anxiety) that had come along with it? My partner and I were fighting a lot, despite having only moved in together a few months earlier. What would happen to my dreams of being a filmmaker if I can’t be active on set for 12+ hours straight? My self-efficacy was falling and falling…

Since 99% of the photos I have from that summer/fall are of my dog (RIP) I can tell what it was like for me.

Self-efficacy is our beliefs in our ability to cope or succeed during a difficult situation. Those with higher self-efficacy, have higher beliefs in their abilities, and those with lower have, well, lower. I see this a lot within the chronic illness community, and it makes sense, because as the opening story pointed out, I’ve been there too. The pain, and discomfort or disability from having one or more chronic illnesses messes with one’s self-efficacy because of the drastic changes it makes to our lives. However, having high self-efficacy has been linked to better quality of life and less disability from illness, so it’s important for us to find ways to improve it. But how do we go about doing this?

Drastic improvements in self-efficacy by the time I took this solo trip to LA in 2018.

I looked at a number of research studies to find some answers, because it is a good and important question. The studies were all from 2010-2021 and the illnesses included ranged from COPD to diabetes to people with multiple chronic illnesses. These are some of the ways to improve self-efficacy, which is directly linked to self-care ability, and you’re about to see why:

  • more physical activity – yes, this can be hard for people with chronic illness, which is why I recommend starting slow and building up, and working with appropriate professionals such as physiotherapists and personal trainers.
  • healthy eating – eating a nutritious diet can improve our ability to cope, but this can be a struggle if you’re not used to eating one, so take this slow, one meal at a time.
  • a lower emotional response to your illness – this is because of the mind-body connection (check out that podcast episode here). This can be accomplished with the help of a psychotherapist and by practicing things like meditations (like these).
  • having less perceived consequences from your illness – I think this is much more difficult to accomplish and can take much more time -change is slow! This will likely improve as other areas improve, and working with a whole team of healthcare professionals was helpful for me.
  • problem solving – our ability to problem solve is linked to self-efficacy in a variety of contexts. Working with appropriate healthcare and mental healthcare professionals on problem solving is a helpful way to learn to problem solve so that you can do more of it on your own in the future.
  • having more social support – build that network! I find that online support groups aren’t always the most helpful because sometimes it’s negative feeding negative, but if you find it is helpful for you then go with it. Also utilizing your family, friends, and any local peer supports you have is important.
  • having a good understanding of your illness – and this means not just the bad parts, the terrible outcomes, but also looking for success stories, as in people who have a good quality of life with your illness. The full range of human experience is important to consider. I call myself a realistic optimist.
  • having doctors who use person-centred communication – I’ll admit this can be hard to find, and if you have the ability to “shop around” for one that does use this then that might be a good idea. This type of communication includes fostering healing relationships, exchanging information, responding to emotions (yes, doctors should understand that you will have an emotional response to your illness), helping you manage your uncertainty about your illness, making decisions collaboratively, and enabling you to be able to self-manage your illness.
As my self-efficacy increased, my drive to help others did too! Masters degree convocation grad pictures June 2021.

Cut to summer 2021 and my self-efficacy is high. I’ve traveled, both with others and by myself between 2017 and 2019. I exercise regularly, try to eat healthy, problem solve well, cope with my emotions, don’t perceive myself as having a disability, am always learning more about my illness, have a great support system, and while I don’t currently have a doctor because I’m going to be moving soon (for the last time for a while) I know that I can find one like the previous ones I had. I utilized a full team of healthcare professionals and took a lot of ownership over my own health in my journey the past 5 years. However, if you told me 5 years ago that I could get here, I probably wouldn’t have believed you. Change is slow. You can keep making the most of it though!

New (and much more refined) season of the podcast launched this week! Available everywhere you get them (here’s the web link!)

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Can Acting “As If” Help Us With Chronic Illness?

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.

Great movie, but not what we’re talking about today.
Image from: https://www.refinery29.com/en-us/2015/07/90743/best-clueless-quotes-movie

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.

Little me.

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.

I would not be able to do most of what I can without self-efficacy.
2 years after diagnosis. Toronto -> Los Angeles. Solo Trip.

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.