Just a little message of hope this holiday season so that we can all keep making the most of it!
The crisis line in Canada is: 1-866-585-0445
The text line in Canada for adults: text WELLNESS to 741741
The text line in Canada for youth: text WELLNESS to 686868
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.
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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“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.
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.
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.
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.
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!
Back when I was first diagnosed with an autoimmune disease, I noticed that my own self-esteem dropped. The person I was in a relationship with at the time didn’t help that, but then again, it wasn’t really up to her to help it. The disability I had from my illness was also very intense at the time. I missed a lot of work, I couldn’t go on long walks, I felt a lot of pain, and that all definitely hurt my self-esteem and self-worth. And that’s where my story ends…
Just kidding, if you’re reading this then you know that is not where my story ends! Actually, it’s where it begins. I was reading something a few weeks ago about self-esteem and chronic illness, just a brief paragraph, and it got me interested in doing a little more research on the topic, because, well, I noticed a correlation between my own self-esteem and self-worth and disability in my illness. I can’t be the only one, right? First of all, let’s define self-esteem and self-worth so we are all on the same page.
Self-esteem: our individual universal positive and/or negative feelings about ourselves.
Self-worth: basically another word for self-esteem.
In general, self-esteem effects our quality of life, which includes our overall life satisfaction as well as how much positive and negative affect (emotion) we experience.
When we are looking at chronic illness, there are some important considerations. First, how we evaluate and view our own bodies is important, often because of the changes our bodies go through because of illness (and/or medications we have to take). Having a perception of body-self unity and positive thoughts about our illness can improve self-esteem (we’ll get to how to do this in a minute). Second, acceptance of disability is related to self-esteem in people who have disabilities (chronic illness is a disability). Acceptance doesn’t just include accepting the diagnosis, but acceptance all that comes with it (pain, lifestyle changes, loss, etc.). The better we are at accepting… the more we are able to do? (Well, yes, but that would actually be another post, so back to the main topic)…
People tend to use different coping strategies when dealing with illness. Though none of these strategies should be categorized as “positive” or “negative” I prefer to think of them as “toward moves” (helping me live a good life) or “away moves” (taking me away from the good life). Away moves would include things like catastrophizing, which has been linked to pain-related disability (yes, it makes your pain worse), higher levels of depression, and overall lower health and well-being. Other away moves include avoidance strategies, like using drugs or alcohol to cope, denial of illness, or staying in bed all day everyday. If you do these things, understand that no one is judging. These are probably natural coping strategies for you as they are for many, many people. However, if we want to improve self-esteem (and thereby improve quality of life with our illness) we want to look at toward moves.
These toward moves coping strategies include hope (goal-directed energy plus planning to meet goals), humour (reframing distress), psychological appraisals (meaning of the stressor, ability to cope, and emotion-focused coping, such as seeking support), and approach behaviours such as seeking social support and positively reframing the situation (yes, the research supports mindset). These are all associated with better well-being, better mental health, and better illness outcomes. This all comes from the cognitive adaptation to chronic illness theory, which in addition to self-esteem, looks at making meaning of illness, and regaining mastery.
I think it’s important to assess which coping strategies you are using, and make changes if needed. If our self-esteem improves, and therefore our disability decreases, then our quality of life is also better. Sounds good to me! To finish my beginning story, I did a lot of personal development work, that led me to starting this blog, and along the way my self-esteem and self-worth drastically improved again, and my levels of disability have shrunk and shrunk and shrunk. My illness may not be cured, but my quality of life is so much better. This experience is also known as posttraumatic growth, which happens when positive change results from adversity, giving the individual better mental health.
New season of the podcast (totally revamped show!) coming June 28. Check out the trailer here.
Keep making the most of it!
Chronically Living 