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From Caregiver to Advocate: My Journey Through Pain and Empowerment

A former palliative care nurse shares their transformative journey from managing others' pain to navigating their own complex chronic conditions. Through resilience, advocacy, and support, they found purpose as a Lived Experience Advisory Committee member, using the Power Over Pain Portal to empower others and foster a sense of community.

My Pain Story 

My first exposure to pain was through other people. I was a palliative care nurse back in the day. Pain is multifaceted. There’s a lot of the symptom management. I managed pain in other people. “Managed” is a terrible word – I helped alleviate symptoms in people I was caring for. And most of that had to do with pain. I was exposed to many pain crises and suffering and not just physical pain but also existential and spiritual pain. Palliative care provides an excellent lens of how to assess and talk about pain, which I don't see a lot in other clinical settings. One of the assessment questions we would ask is, “What's your understanding of this? How are you making meaning of your experience?” Those types of questions, which I had been asking in palliative care for 10 years, I don't see at all in other places. As somebody who is a former clinician, that’s interesting. In 2019, one day I woke up for work and my right knee had swollen so much I could barely fit it into my scrubs. I could hardly walk by the end of my 12-hour shift. I went on sick leave. I was diagnosed relatively quickly with aggressive acute rheumatoid arthritis, and a progressive form of it. My mom lives with rheumatoid arthritis so I wasn't surprised. As my symptomology became more complex – living with fatigue, cognitive impairment, and other symptoms, I was also diagnosed with fibromyalgia and myalgic encephalomyelitis (chronic fatigue syndrome). It's hard to tease one thing from the other. And the medications that I was on also impacted how I experienced inflammation, cognitive impairment, and fatigue. My pain experience is hard to isolate from the rest of the impact of pain and living with complex chronic disease. Since then, I've been diagnosed with hypothyroidism, liver disease because of my medication, and hypertension. Because of the fibromyalgia, I experience generalized pain, neuropathy, abdominal pain – including possible gallbladder symptoms, and hypersensitivity to environmental stimuli. It's all sort of like this dumb soup. It's a dumb soup. 

Thankfully I think I'm very well resourced. 

I leaned on Pain BC - they had resources available for the public. And now I am the public. I couldn't work, and needed to do something, to contribute. So, I ended up volunteering with Pain BC in their Coaching for Health program and became a peer support facilitator in their Pain Support and Wellness Groups. I would say the overall satisfaction of my life, despite pain, in spite of it, or inclusive of it, is relatively high because I have incredible support. I'm able to express and hopefully advocate for myself well, I'm very aware of the advantages that determine my experience of health and my ability to navigate social services and the healthcare system. And at the same time, my health is all over the place. There are days or weeks where I struggle and suffer emotionally and mentally. That said, I still have hope, I’m still curious, I still get inspired, and creative. I don't think I would be where I am right now, feeling how I feel about myself and my life, if I hadn't experienced pain and health issues to begin with. I think I would have gotten there, but not as fast. It accelerated my spiritual and personal growth. I often say that pain is a complicated gift, one that I would not have realized how important it was and one that I wouldn't wish on anyone. And at the same time, I wouldn't give this away. 

My Experience with the Power Over Pain Portal As a Lived Experience Advisory Committee (LEAC) member 

I have the opportunity of bringing people together, sharing the knowledge and benefit of the Power Over Pain Portal. I do this with Pain BC, Pain Canada, and the Chronic Pain Network. We just want to be this robust network hub so that nobody lives in pain alone. In whatever capacity I’m in, I’m always pointing people to the Power Over Pain Resources. I show people how to navigate the Portal and ask people for their feedback because as a LEAC member, I can effect change, and that's empowering. When I share my knowledge of the Portal, depending on how they’re experiencing pain that day, I provide people with multiple ways of accessing information, whether it's the link or I walk them through the Portal, or bring them specifically to the Events page to help them register in a specific event, or find a topic in a past event that they can view on their own time. I tell people about the various topics the webinars cover, for example, sleep and pain, or nutrition and pain. I also share the youth Portal link with people I know – parents who have children who live with chronic pain. 

How I use the Power Over Pain Portal 

As a user of the Portal, one of my favorite things about it is the Workshops and the recordings. Although I know a lot about managing my own pain, I always learn something or looking at something in a different way. There’s a lot of information out there. But it’s how people receive it (relate to it) and how it creates meaning in their lives – if they find it helpful, or if it spurs them into action, or generates more questions. The courses on the Portal, like the LivePlanBe+, the people’s stories inspire me – their stories without the jargon are meaningful – these stories resonate. It reminds me of the purpose of the LEAC Panel Discussions – to provide information related to living with chronic pain by people living with chronic pain. It shifts the power balance between the clinician and the person with lived (and living) experience of pain – discussions for the people by the people. Another thing that I feel good about are all the resources on the Portal – each one has been reviewed by the members of LEAC – people living with pain who have provided their input so that if it’s on the Portal, it’s because it’s been vetted.