lived experience – Chronically Living

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.

Image from: https://www.facebook.com/hashtag/wps21

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!

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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This past weekend I attended the World Pain Summit ’21, which is put on by the Pain Society of Alberta, and has speakers and attendees from around the world. I attended as an Allied Healthcare Professional with Lived Experience (the options were: Physician, Physician with Lived Experience, Allied Healthcare Professional, Allied Healthcare Professional with Lived Experience, and Person with Lived Experience). By the way, this was free to attend for non-healthcare professionals with lived experience (only about 150 people with lived experience only attended out of 1600ish attendees). The summit was 3 days, had incredible expert physicians/allied healthcare professionals/researchers, giving the latest and important information on treating chronic pain and chronic pain research. I attended a lot of sessions, so I decided to make this into 3 posts so that I could relay as much as possible. Part 1 is a recap of Day 1 of the summit.

Social Media & Pain. There were 3 presenters on this one – a researcher, a physiotherapist, and a person with lived experience. Much like last week’s blog post, they went over the good and the bad of using social media, both as a person with lived experience and as a healthcare practitioner. The good includes learning, community knowledge, knowledge construction, combatting isolation, raising awareness, and validating common experiences, among others. Again, they recommend not using social media for medical treatment and to be careful when sharing personal information online. The part of this that I want you to take away is when they talked about this: “Pain is normal. If you expect to be outside of pain 100% of the time, you’re wrong.” Because that’s impossible. Pathologizing pain to the extent we do (especially online) is like pathologizing blinking. It’s not something we necessarily can (or need to) fix but rather live alongside. We need to view our normal responses to an abnormal situation (chronic pain) as just that.

Two of the social media presenters are members of GAPPA, which I’m looking into joining as well.
Image from: https://twitter.com/keith_meldrum/status/1364123971914919938

Head Injuries & Migraine/Migraine Disease Management. These were 2 separate sessions, with some overlapping content so I decided to talk about them together. Post-traumatic headaches from head injuries often resemble migraines, and migraines themselves can be considered a disease because there are changes in both brain structure and function. There are some non-modifiable risk factors for migraines (female, low SES, head trauma, genetics/epigenetics, childhood abuse) and some modifiable ones (these are important): obesity, medication overuse, caffeine overuse, and depression/anxiety. There were several recommendations for treating migraines, using the acronym BRAINS. Biobehavioral therapy/biofeedback/mindfulness/CBT/physical therapy; (which includes coping sills like self-monitoring, pacing, relaxation, self-talk, connection, and treatment of trauma/mood/cognition). Risk factor modification and lifestyle (diet, exercise, sleep). Adjunctive therapies (neuroceuticals, neurostimulation). Injection therapy/onabotullnumotoxin A/extracranial nerve blocks. Neuropharmacology. Support and Education. AND SLEEP HYGIENE is important (check on my podcast on that here.)

Image from: https://msktc.org/tbi/factsheets/headaches-after-traumatic-brain-injury

The Painful Implications of Psychological Trauma. There is, as I’ve written before, a strong correlation between trauma and chronic pain/illness. This was an important session for my as a psychotherapist. Mental health treatments for chronic pain & trauma should include healthy coping skills, CBT for pain, radical acceptance, trauma-focused therapy/exposure therapy, mindfulness, trauma processing, body awareness, somatic treatments, and behavioural activation. Two really important pieces came out of this. The first was for physicians: the most powerful thing you can say to clients is “I believe you.” I hope that they take that seriously. The second is for those of us with lived experience: pain is a psychological phenomena but that doesn’t mean it’s not real. The example given was how temperature is experienced by different people differently (for example, my mom is always hot and my dad is always cold). Our brains are involved in everything we think, feel, sense, etc. But all of that is also real.

It doesn’t matter if it is Big T trauma, little T trauma, PTSD, or any of the other terms used – they are all trauma and should be treated as such.

How Our Brains Make Unconscious Judgments and What We Can Do About It/Social Innovation on Equity and Diversity Inclusion. There were 3 sessions in the afternoon. I attended two of them and watched the Q&A. This session was presented by a trans woman. The other two were by Indigenous peoples. This was the social justice, diversity, and inclusion part of the weekend. There was so much great information that I hope all healthcare practitioners learned from. The part of this particular session which is helpful for everyone are the strategies to reduce our bias (because we ALL have bias – unless you literally without a brain). Avoid blame or guilt. Focus on the impact, not the intent. Choose a positive attitude. Recognize bias in action and take action. Micro-affirmations. Active listening. Be intentional. Avoid generalities. Question the reliability of sources. Treat people as individuals, avoid assumptions. Get to know people who are different than you. Practice the Platinum Rule – do unto others as they wish to be treated. The last session had to do with patterns of change and what some healthcare organizations are doing to make these changes.

Pride 2019. We are all human. Our pain (physical or emotional) is all real. We deserve to be treated as such on both of those counts.

Okay, so that was a lot of information (and that was just Day 1). I will likely be doing more individual posts and/or podcast episodes about some of this information in more detail as it might be relevant to chronic pain/illness warriors. If you have any requests from anything from this post, let me know by commenting or DM-ing me on Instagram. Part 2 comes next week. Keep on making the most of it!

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