Hello Readers, Warriors, Spoonies! I appreciate your support on this blog which I’ve been running (and writing) for several years. I’m going to take a small pause on new content (other than a few Sunday videos which were prescheduled) as I worked on a few other projects (new podcast) and focus on work, which is starting to pick up again. I also find these breaks really important for my mental health.
If you have ideas for content you’d like to read about on here (or see videos for) comment on this post as I’d love to hear from you. The podcast I’m starting with my friend and colleague is on personal growth, and I’ll definitely give more details in the near future. You can always follow Chronically Living on YouTube and follow me on TikTok @kelseyleighharris for coping skills. I hope to be back soon.
Let’s face it, there are a lot of websites, books, podcasts, etc. out there that are resources for both chronic pain and/or personal growth. So many, that it’s hard to sort through to find the good ones. I have been on a personal growth journey for several years, and that journey started just over a year after my UCTD/fibro diagnoses. So for me, they are fairly tied together. While I recognize that is not going to be the same for everyone, I just want to show that it is possible to learn to cope with chronic pain and engage in personal growth and development at the same time. Which is a little different that say Maslow’s Hierarchy of needs, which states that basic needs – such as safety and health (I think chronic pain falls under these subcategories) need to be met before achieving self-actualization. If anything, it seems to align more with some schools of existentialism, like that of Viktor Frankl, who could find meaning even while living in a concentration camp (basic needs not being met).
One of many resources available on the internet.
All that said, here are some of my favourite resources for chronic pain and personal growth:
Websites A Chronic Voice (blog) – I’ve actually guest-posted on this blog. Sheryl does an amazing job with blog and has a ton of informative and helpful articles and posts.
The Pain Toolkit (website) – Pete Moore is a person with lived experience who presented at the World Pain Summit that I attended in October 2021. His pain toolkits, workshops, and other resources are comprehensive and impressive.
Tiny Buddha (website) – This website probably falls under the “personal growth” category but because there is a ton of evidence of mindfulness helping improve the lives of those with chronic pain, you may find it beneficial as well.
Books When the Body Says No – this book by Gabor Mate (MD) is quite informative about chronic pain itself, and includes real life stories about his patients over the years. It can be helpful for shifting perspective and gaining understanding of all of the biopsychosocial factors that affect pain and illness.
Full Catastrophe Living – Jon Kabat-Zinn (MD) writes about his mindfulness-based stress reduction program, research that supports it, and how it (and mindfulness more generally) helps with both physical and mental health. Definitely a read if you’re interested in mindfulness already.
Tuesdays with Morrie – this classic book takes us through several Tuesdays that author Mitch Albom spends with his former university professor, Morrie Schwartz, who is dying of ALS. It offers a lot of wise advice and can help with outlook and perspective in living with illness.
Podcasts Admittedly I don’t listen to a ton of chronic illness/pain podcasts, but these are some with great overlap.
Unf*ck Your Brain – hosted by life coach Kara Loewentheil who has chronic pain and offers advice and coaching on a variety of topics. She includes a feminist perspective and some cognitive-behavioural inspired techniques.
Therapy Chat – designed for both therapists (and hosted by a therapist) and anyone interested in mental health, there are a ton of episodes on chronic pain because of the overlap of pain/illness and trauma (the hosts’ specialty is trauma). Not a substitute for therapy, but definitely a resource for psychoed.
The Happiness Lab – I think this is just a fantastic podcast for anyone because we all have misperceptions about what will make us happy, and we can learn a lot about what will actually make us happy from Harvard Psychology professor Laurie Santos and her guests.
YouTube Okay, I’m actually just going to plug my own content here – don’t hate me for it.
Kelsey L Harris Meditations – I offer a ton of mindfulness and meditative-type exercises, many of them that work great with chronic pain, and most based on Acceptance and Commitment Therapy which has been shown to be helpful for chronic pain.
Aligning Mindfully – my other meditation channel which include a 5 minute meditation challenge (with more meditations and challenges coming soon!).
I hope you all find these resources helpful! If you have any others that you think should be on the list, please comment so I can check them out as well! Keep making the most of it!
“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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“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.” – Viktor Frankl
Viktor Frankl
For those of you who are not familiar with Viktor Frankl, he is a psychiatrist, author, existential philosopher and Holocaust survivor. His belief system, which was seemingly helpful to him while he was in a concentration camp, is that life can have meaning even in the worst possible circumstances (like he himself faced) and we are motivated to continue to live when we find that meaning. Like many other existentialists, Frankl believed we had the choice to do what we wanted with the circumstances we are given, even if we don’t always get to choose the circumstances ourselves. When it comes to chronic illness – physical or mental – it can be hard to always see the choices available to us, and sometimes those choices may be more limited, but they are still there. If I am in pain today, I can choose to lie on the couch or I can choose to do some stretches. I can choose to do nothing, or I can choose to sit at the computer and write a blog post that will hopefully help someone else. Depending on your situation, your choice options will look different than mine and that’s okay. The last part of Frankl’s above quote says that “In our response lies our growth and freedom.” Personal growth, and healing journeys (check out my podcast about healing here and personal growth here) are difficult but necessary if we want to live full and rich lives, if we don’t want to give up and into our circumstances. There is so much overlap between chronic physical illness and mental illness and feelings like hopelessness and helplessness play into both. Breaking ourselves out of the cycle is the key. That often takes the form of reaching out for help, and/or using our own self-help and self-care skills to propel us forward (for example, reading self-help books about these topics can be helpful if you don’t want to or can’t afford therapy).
Meaning, choice, freedom – even with chronic illness.
Recently I have been learning a lot about Acceptance and Commitment Therapy as that is what I would like my practicum to focus on (I have to pick something that is CBT – cognitive behavioural – focused and ACT is “third-wave” and combines a lot of mindfulness). Here is a quote from the ACT training I’ve been completing.
“In this moment I’m holding my pain so that I can choose to do the things I care about.” – Timothy Gordon
Values and meaning look different for each of us. (Vienna, 2017)
ACT is very values focused and as you can see values are closely related to life meanings which stem from growth and freedom, which stem from choice. This is a therapy with a lot of efficacy for chronic pain and chronic illness because it asks us to acceptance our pain, and helps us to move toward our values. I personally accepted my pain and my illness a long time ago. That acceptance has allowed me to do more with my life, like go back to school and start a new career, travel, exercise, write a book, and help others. These are all values of mine and they all bring my life meaning. But I didn’t have to choose to move toward any of these. I could have stayed where I was, but truth-be-told, I wasn’t happy. That realization of unhappiness sent me down this growth path which in many ways started with the acceptance piece. If you’re not happy, or you don’t know what your life meaning is or what you want it to be, I would suggest just starting with your values. What’s important to you? And then what your life would look like if you were living for those values. Now, this work is of course best done in the context of therapy, but if you’d rather some reading on the subject I would say check out the book The Happiness Trap by Russ Harris.
Acceptance can lead to new realities.
Your pain and illness don’t have to control your lives if you don’t want them to. Keep making the most of it everyone.
I was doing a meditation recently (through my favourite meditation app) and the meditation teacher brought up of the concept of Santosha, which is a Sanskrit word that essentially translates to contentment. After doing the meditation I decided to look a little more into the word and it’s meaning because I think contentment is a really hard concept for many people to practice (myself included) and especially for those with chronic illness.
What is contentment exactly? The dictionary defines it as a “state of happiness and satisfaction.” It can be viewed as being positive even when things are difficult. Now I know I can hear some groans. Yes, positivity isn’t a cure for anything, disease or otherwise. And no, I’m not saying one needs to be positive 24/7. In fact there is some psychological research that states that too much positivity is counterproductive. However, what I mean here is not just giving up on life because of its difficulties (and let’s face it, every human faces difficulties… those of us with chronic illness might just face a few more). Instead we look to find how our difficulties and challenges can lead us to personal growth. My own personal growth journey has included riding the waves of the good and the bad and learning to to (mostly) be content with my life as I have made changes. Yes, I get sad, depressed, anxious, anger, angry, frustrated, and the whole variety of human emotions. I also try to find the good in my experiences, come up with plans, and change and grow as necessary.
Can you spot me up there?
How do we practice the concept of santosha? I think it begins with mindfulness, through practices like meditations, body scans, yoga, breathwork, and so on, that keep us in tune with the present. Because anxiety is worrying about the future and depression is ruminating about the past. We can’t change the past and the future hasn’t come to fruition just yet.
practice positivity as much as you can and remember that making assumptions about yourself, others, the world, your illness, etc. can hinder your own personal growth.
be purposeful in your actions and put your best effort into everything you do, even if you’re not well enough to do much.
control what you can, and let go of what you can’t, or as with mindfulness – just keep breathing.
remember that contentment supports compassion, including self-compassion, which you definitely need if you’re a chronic illness warrior.
be grateful for the good things in your life because even at it’s worst, there’s usually at least one thing you can be grateful for.
serenity goes with contentment and giving up the excess, the things you don’t need, may help with that.
Content.
I am 100% not saying that this is easy to practice. Nor am I suggesting that it can be (or should be) done all of the time. I do think that there is some benefit in it though. Being content with ourselves, circumstances, whatever, doesn’t mean we can’t change and grow, but rather may facilitate it instead. As always friends, keep making the most of it.
Chronically Living 