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

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 process.

Eventually, my nephrologist came in with a look I will never forget. She thought she knew what it was: a particular form of vasculitis. That became GPA. For general background, the National Institute of Arthritis and Musculoskeletal and Skin Diseases provides an overview of vasculitis.

Having a name did not make everything easy, but it gave us a direction.

How did you cope with weeks of not knowing?

I kept reminding myself that a possibility was not the same thing as an answer. We did not know whether it was cancer. We did not yet know exactly what it was. I needed to avoid treating the most frightening explanation as a confirmed fact.

That is much easier to say than to do. Sometimes you need someone beside you to gently bring you back to what is actually known.

I was not trying to tell myself that nothing serious was happening. Something serious clearly was happening. I was trying to stop my mind from adding certainty where the medical team did not yet have it.

For me, that distinction made the waiting a little more manageable.

Family, Brain Fog, and Asking for Support

How did you decide what to tell your children?

Initially, my husband and I agreed not to mention cancer until we knew more. We wanted to protect them from a possibility that might not be the diagnosis.

But uncertainty created its own fear. When my daughter saw the worry on my husband's face at the hospital, she thought I had died. That was a painful reminder that families fill in the blanks when they do not know what is happening.

We decided to include our children in conversations with the doctors, and for our family, that helped enormously. They could hear information directly and understand more of what was going on.

I would not assume every family needs exactly the same approach. The useful conversation is: What do you want to know, and how can we help you feel included?

Were you able to keep track of all the medical information?

Honestly, no. I knew brain fog was real through migraines and through working with people who experience it. But this was different. I was amazed by how difficult it became to absorb and organize information.

My husband was incredible. He is an engineer and a numbers person, and he listened, asked questions, and helped clarify things when I could not. Later, when I had questions, he could often remind me what had been said.

He also has a rare disorder, so we had to protect his health, including making sure he went home to sleep.

Not everyone has a partner who can do that. A trusted friend, another family member, or an agreed recording of an appointment may help preserve information. The point is not to expect yourself to remember everything while seriously unwell.

Using the Tools Without Demanding Positivity

Which tools from your coaching work helped in hospital?

One was understanding that symptoms were happening in a context. There were real medical problems, and pain was part of that experience. I did not need to turn every sensation into a new story about everything getting worse.

During procedures, I would remind myself that something could be frightening while I was also being cared for. That helped me move through the moment rather than treating every piece of information as another threat.

I also looked for small things that were neutral or good. I was not forcing myself to feel grateful for failing health. That would have felt impossible.

But my family was there. Someone was helping me. There were still points of connection. Those were things I could genuinely hold on to.

What were the turning points in your recovery?

The first was getting a diagnosis and beginning treatment directed at it. That felt like moving from survival toward a first step forward.

The next was noticing that treatment was helping enough that I could start thinking about home. I had been through transfusions, procedures, and a lot of difficult days. I had also been nearby when other patients experienced traumatic events. I was ready to leave before my team felt I was ready.

Thinking about sleeping at home gave me something concrete to look toward.

Neither turning point meant the whole journey was resolved. They mattered because they made the next part imaginable. Sometimes that is what hope looks like: not a complete answer, just a believable next step.

Remission, Movement, and a Different Relationship With Your Body

What does remission mean for you now?

Being told I was in remission was wonderful news. It did not mean everything had returned to how it was before.

My kidney function remains very low, and a kidney transplant is part of the conversation. There is also the possibility of relapse. So I am learning to live with good news and ongoing uncertainty at the same time.

What helps most is talking with my specialists. Each conversation gives me a deeper understanding, and that makes things a little less frightening.

I may never know why this happened. I would love an explanation that told me exactly how to prevent it happening again, but I may not get one. I can still learn about my situation and participate in the plan for my care.

What questions help you feel more prepared for a possible flare or relapse?

The questions that sit in your mind at night deserve space in the appointment. We often worry about “what if” without actually asking our medical team what would happen next.

I find it helpful to prepare questions beforehand, especially when appointment time is limited:

• What might a relapse look like for me?
• Which changes should prompt me to contact the team?
• What should I do if those changes happen?
• What does my family need to understand about the plan?

A plan cannot promise that nothing will go sideways. But knowing the next step is different from facing an unknown with no direction. Each conversation has helped me feel more informed rather than simply more watchful.

How did you rebuild movement after coming home?

I came home in a wheelchair and could barely manage two steps. After weeks in hospital, I had lost a great deal of strength. Having a diagnosis and treatment plan was essential, but I still needed to work out how to return to things I wanted to do.

That is where pacing became important. I know some people hate that word. But for me, it meant not pushing through pain or fatigue simply because I wanted to reach the goal faster.

It was gradual: a little movement, then a little more. Not running before I could walk.

I also became better at noticing my own signals, including fatigue, tingling in my toes, and difficulty tolerating heat. Those were things to pay attention to, not ignore in an effort to prove I was recovering.

How are you feeling, and what would you want someone newly diagnosed to hear?

Pretty damn good, honestly. Not the same as before, but good.

I am learning not to make my previous life the only acceptable measure of progress. There is a different Dina to get to know now. Vasculitis is part of that, and I think of living with it as a partnership rather than a constant battle against my body.

What I most want someone to hear is that there is hope, whether you have a diagnosis yet or are still waiting for clarity. Hope does not have to mean a cure or a return to exactly who you were.

It can mean understanding more, asking for support, rebuilding something slowly, and making the experience less frightening. We do not need all the answers before taking one useful step forward.