From Chronic Pain Recovery Coach To Patient – Navigating A Rare Autoimmune Disease copertina

From Chronic Pain Recovery Coach To Patient – Navigating A Rare Autoimmune Disease

From Chronic Pain Recovery Coach To Patient – Navigating A Rare Autoimmune Disease

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Scroll to the bottom of the page to listen to the Audio version of this blog post. Foreword: A heartfelt thank you to the wise and wonderful Alesia Briggs for generously sharing her time and for the thoughtful, meaningful conversation about my health journey. Alesia is an incredible coach, and I’m so grateful for her curiosity, compassion, and the opportunity to share my story through her eyes. What happens when the tools you teach others meet a serious illness of your own? You find out that knowing the science does not make you immune to being human. I help people understand persistent pain, work with their nervous systems, and find a way forward. Then I was diagnosed with granulomatosis with polyangiitis, or GPA, a rare form of vasculitis, and suddenly I needed to draw on that knowledge myself. There was fear. There was uncertainty. There were moments when I could not take in what doctors were telling me. Being a coach did not mean I should somehow handle all of that perfectly. The tools helped, absolutely. But they did not give me every answer. They helped me take the next step while I was still frightened, still learning, and still very much a person going through something she had never chosen. Understanding Pain Beyond the Physical Symptoms What gap were you trying to fill through your work and the Chronic Pain Experience Podcast? There is so much information emerging about pain, and it does not always reach the people who need it. Some people have never been introduced to the newer science of pain. Their doctors may not have had much training in it either. That is not about blaming anyone. It is about recognizing a gap. During lockdown in 2020, I spent more time learning alongside other pain providers, and that deepened my work enormously. I love a good conversation, so a podcast felt like a natural way to share what I was learning. Reaching fifty episodes was a happy accident. I had not pictured that milestone when I started, and I have learned a tremendous amount along the way. How did you come to work with people living with chronic pain? My interest started well before this diagnosis. I am also a Pilates instructor, and people often came to movement looking for something that felt safe and accommodating. One woman, Michelle, taught me so much. She had lived through fibromyalgia, cancer, and a long list of other health challenges. Getting to know her helped me recognize how many parts of the illness experience were not being addressed. I had also experienced migraines and headaches, and my mother lived with migraines. So pain was not unfamiliar to me, even though I was not living with constant pain myself. What fascinated me was everything beyond the biological piece: the psychological experience, the nervous system, and the impact of difficult life experiences. Getting sick made that wider picture even more real. Where do chronic pain and chronic illness overlap, and where are they different? They are not interchangeable. Someone can have debilitating persistent pain without imaging providing a clear explanation. With an illness like mine, doctors eventually identified a disease process affecting my body. But there is overlap in the uncertainty, the fear of a flare, the changes in daily life, and the way we relate to our bodies. Living with either can affect how alert we feel to symptoms and how confident we feel about doing ordinary things. So far, I have not been living with persistent pain from vasculitis, although there was certainly pain during my illness. What has helped is recognizing that pain education and nervous system tools can support my experience without replacing the medical treatment I need. From an Ordinary Illness to a Long Hospital Stay How did your illness begin? At first, I thought I had the same cold or flu-like bug my family had. My husband and children got through it. I seemed to be getting through it too, until I was not. I travelled to Winnipeg with my daughter and kept going downhill. I lost about ten pounds, could not keep food or fluids down, was coughing terribly, and became so exhausted I could barely get off the couch. That was definitely not me. When I went to hospital, lung cancer was raised as a possibility almost immediately. Hearing that was frightening, especially before we had a clear explanation. Then more problems appeared: my lungs, my kidneys, a major digestive tract bleed, fluid buildup, and concern about my heart. It was a cascade of things, rather than one straightforward symptom. How long did it take to get a diagnosis? I was hospitalized for about six and a half weeks. It took roughly four weeks before there was a clearer understanding of what was happening, and even then there were competing possibilities. I had care across two hospitals, with different teams contributing. I am grateful for that. The benefit is that you have people bringing different perspectives. The difficult part is that you also have a lot of information and opinions to...
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