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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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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Pain Scales – The Enemy of Chronic Pain Warriors

Literally my least favourite question when I go into any doctor or specialist appointment is, “what is your pain like today?” or “on a scale of 1 to 10, 10 being the worst ever, how’s your pain right now?” To someone with chronic pain, these are the most useless, arbitrary questions. Here’s the thing, I understand why doctors and other healthcare professionals ask the question. They want to get a gauge on if your pain is better or worse than it has been in the past. It totally makes sense. However, there are a few things about chronic pain (and pain in general) that aren’t taken into account with this questions.

  1. My perception of what a “10” is may be higher or lower than your perception of what that is.
  2. I’m not always entirely sure what number I should give. Like really, what is the difference between a “6” and a “7”?
  3. Often pain changes throughout the day, so just because I give it a “4” right now, doesn’t mean that it won’t be an “8” in half an hour.
Hm… I’m smiling and happy in both pictures and yet my pain is a “0” on the left, and a “7-8” on the right.

And yet, this is always the first question asked at any appointment. Sometimes I literally just want to say “I don’t know.!” How many of you feel this way to? Plus, sometimes there is this need to want to give a higher number so that the pain is taken more seriously and not just dismissed. Here’s the thing that healthcare professionals often miss – there are better ways to describe pain than using a 1-10 scale. For example, “what type of pain are you experiencing/do you experience?” “What times of day are worst for pain?” “What activities or circumstances do you notice more pain or less pain?” “Are there any points in the day when you feel little to no pain?” And so on. These questions are easier to answer, and honestly, give a more realistic perspective of my pain than me guessing at a number to give my doctor.

Just gonna throw in the random deer visiting a retirement home across the street from me.

The main model used in medicine (and psychology) right now is the biopsychosocial model (except sometimes doctors forget to use it when talking about chronic pain it seems). For those of you not familiar with this, it is the interplay between biological and psychosocial causes (or maintenance) of a medical (or psychological condition). When applying this model to chronic pain, we look at the biological causes of an illness or injury, and how psychosocial factors maintain or increase the physical sensations of pain. It’s that mind-body connection. Here’s an example: the hypothalamic-pituitary-adrenocortical (HPA) system in your brain has been associated with several chronic pain syndromes including fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and MS. It is one of the biological causes of pain (though not necessarily the only). Psychological factors that can maintain or increase this pain include feelings of helplessness and hopelessness. Social factors and behaviours that maintain and increase pain include door diet and nutrition, lack of exercise, and substance use (including smoking). Stress is another major psychosocial factor associated with chronic pain. So, rather than asking what are pain is on a scale from 1-10, looking at these factors is likely more productive in both understanding and managing pain!

Image from: https://www.practicalpainmanagement.com/treatments/psychological/biopsychosocial-approach
The paragraph on the biopsychosocial model is cited from this article.

Let’s talk about pain management. Whether you do this on your own, or with the help of your healthcare team, here are some ways to improve your pain management (because let’s face it, chronic pain is unlikely to magically go away):

  • medication compliance – taking all medication as prescribed!
  • addressing psychological factors – such as anxiety – this could be through relaxation and meditative techniques or even exercise, or going to see a psychotherapist
  • utilizing interdisciplinary healthcare teams – do you have a family doctor? A specialist for your illness or injury? A psychotherapist? A physical and/or occupational therapist? Anyone else who can help you with your pain? (I also have a naturopath and chiropractor for example).
Make a therapist part of your healthcare team! We’re here to help!
(just noting that I’m a therapist-in-training right now)

For anyone reading this who is not a chronic pain warrior, please remember that pain isn’t in our heads, and telling us to just deal with it isn’t helpful. In fact it can be stigmatizing, and people with chronic pain always face stigma because of a lack of understanding. We may laugh, smile and have fun, and yet be in pain at the same time. The things are not mutually exclusive. I’m going to link a few episodes of my podcast that complement this post below. For now, keep making the most of it everyone!

Mental Health and Chronic Illness

The “I Suck” Feeling

Locating Our Inner Strength

How Stress and Anxiety Manifest in the Body

Holistic Approaches to Chronic Pain