My Experience at the World Pain Summit ’21, Part 2

If you read last week’s blog post then you know that I recently attended the World Pain Summit, put on by the Alberta Pain Society. I did this as both an allied healthcare practitioner (as a clinical counsellor) and as a person with lived experience. By the way, this event is apparently always free to people with lived experience, so keep an eye out for it next year. The summit was 3 days and had so much info, that this is going to be part 2 of a 3-part post, and focuses on the content of Day 2. Without further ado, here’s what I learned.

How Living with a Dog Can Improve Quality of Life and Well-Being in People with Persistent Pain. The first bit of interesting info was a bit of an aside – only 1% of the curricula for healthcare professionals is on pain, which means if your doctor doesn’t understand (and isn’t attending these kinds of conferences) that is likely why (definitely not an excuse – all healthcare professionals should be attending conferences/summits/etc throughout their careers). The most interesting parts of this session was the statistics on dog/pet owners (cats and other kinds of pets count):

  • they report lower pain
  • less depression and anxiety and loneliness – i.e., better mental health
  • improved well-being and meaning/purpose in life

Having a pet also gives you a non-judgmental listener whom you can talk to, and petting an animal releases oxytocin in our brains, which has a calming effect. Yay for pets!

This is my parents’ dog, Beau.

Is Supported Pain Self-Management Your First Choice or Last Resort?: 5 Key Coaching Support Skills. This was present by Pete Moore, a person with lived experience, who wrote a book on the subject. The 5 key skills he talked about were: (1) goal setting and action planning; (2) practicing daily activities – I know ADLs can be hard for some people but they are important to well-being; (3) problem solving; (4) keeping active, moving, including stretching and exercise; and (5) knowing what to do if you have a set-back (i.e., planning for that in advance). Much of this involves having a support team, pacing, prioritizing, being patient with yourself, learning relaxation skills, tracking your progress, and resilience.

Pete Moore presented this cycle, which really resonated with me and probably many others.

How a Pain Doctor is Using Social Media to Spread Knowledge About Chronic Pain. This was a session more for healthcare professionals on how to start a YouTube channel (and why they should). But some interesting factors for Spoonies: the current quality of medical information on YouTube is very low, so please be careful and look for trusted sources (i.e., trained healthcare professionals in different areas).

My YouTube channel is for meditations (with an emphasis on pain and illness).
Let me know if I should include other psychoeducational content and skills.

Trauma, Illness, and Healing – Dr. Gabor Mate’s keynote. I’ve written a ton about Dr. Mate’s work in the past, and there was obviously some repeat in content about trauma, childhood abuse, insecure attachments and stress and their relationship to chronic pain and illness. A couple of things I will share:

  • mind body practices (like yoga) should be included in chronic pain treatment
  • a lot of back pain is associated with psychoemotional stress (tension, stress, trauma)
  • Go to a physician for what they can do (prescribe medications, perform surgery, etc.) and find other practitioners to help you with the other parts of treatment
  • diagnoses are descriptions, not explanations
  • psychological and spiritual support is important

If you’re not familiar with Dr. Mate’s work, check out When the Body Says No (I also did a post about the book awhile back).

Dr. Gabor Mate is world leading expert on the trauma-stress interaction with illness.
Image from: https://californiahealthline.org/news/addiction-rooted-in-childhood-trauma-says-prominent-specialist/

Challenging Chronicity Thoughts: Words Matter. So this was a mental health session, if the title isn’t clear! It emphasized that psychological factors are an important component of pain experience and are the most powerful psychological predictor of adverse health and mental health outcomes associated with pain – they even affect our treatment responses to medications, injections, physical therapy, and most other treatments. Recovery is not just about talking (to a therapist), needs and activity but also about ways of thinking. Two important notes for my fellow Spoonies: (1) pain is perceived by your brain (all in your head) but it is real; and (2) the word pain takes you right to thinking about/feeling pain (check out this podcast episode I did on externalizing language and pain/illness).

Chronicity thoughts are about way more than language. I highly recommend seeking therapy if you find you think about your illness/pain a lot.

Next week I’ll bring you a post on the information from the final day of the summit. I hope that you find some of this helpful when thinking about illness and well-being. Keep making the most of it everyone!

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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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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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