I wasn’t faced with the daunting prospect of travelling to seven cities in seven days, with seven plane flights to get between them all. I only had a single three-hour car drive, but I held little hope that getting to the Myositis Discovery Program in Brisbane would be logistically possible.

My myositis had relapsed three months before, and I was still struggling with simply staggering from room to room. My only child still at home was still on her L-plates, and the thought of driving to Brisbane filled her with abject terror.

But as the weeks went by with no idea of what the next option to treat my currently active myositis could be, I rethought my options. Two weeks before the conference, I asked my husband if he had any ideas on how I could get there, and he kindly volunteered to take a day off work to drive me.

A week before the conference, I restarted prednisone. Without it, I would never be able to manage the drive, let alone a day sitting upright in a chair. With it, I was hoping to survive at least the morning sessions.

We were the first to arrive…the Gold Coast and Brisbane rush hour traffic being kind to us with minimal holdups from the usual bumper-to-bumper traffic. It was lovely chatting with all the organisers and researchers and meeting everyone there.

The talks were informative and interesting. First, there was a rundown of the different kinds of myositis, many of the antibodies involved and how they fit into the conglomerate of diseases that make up what is overall known as myositis.

We heard from a physiotherapist about the importance of staying active and how to fit in small increases of muscle use into our days. We also heard about some of the new potential treatment avenues in the pipeline.

I rested my chin on my hands with my elbows on the table, trying to support my neck and relieve my aching muscles. Just seeing a room full of people, all interested in my disease, which hardly any of my doctors had ever seen before, was a fantastic experience.

I had pre-submitted my queries about IVIGs in case I didn’t dare to ask them aloud. It can sometimes be hard to work out from the literature what is practical (or logical) in real-life clinical practice. I desired more information about what the experts were currently doing to take back to my local rheumatologist.

First, I was interested in knowing about repeating the loading dose of IVIGs after my relapse. I was told this was easily done and shouldn’t be a problem.

I was then curious about my increased muscle weakness in the days before my IVIGs. When I described this to my local rheumatologist, he told me my symptoms didn’t make sense. I had found this frustrating because he never said why.

I also mentioned that my rheumatologist discusses the necessity of decreasing my IVIG dose at every appointment…something I found very stressful, as I still had multiple days of difficulty mobilising every month due to hip flexion weakness.

The local rheumatologist answered first. She started by saying that she can’t just go on what her patients say about their symptoms. Many of their complaints are not necessarily going to be helped by IVIGs, and she has very few patients whose myositis is not well controlled by immunosuppressant medications.

This helped me better understand my rheumatologist’s perspective. In his long years of clinical practice, his experience had probably been similar. He hadn’t had a patient like me before and was perhaps assuming my complaint was about fatigue and not weakness.

I then added in the information that before my relapse, I could walk more than a kilometre, and now I can barely walk around the house. Professor Needham then added that while decreasing IVIGs is ideal, some patients are unable to do this and require much longer-term IVIGs. Many of these patients have Necrotising Myositis.

Her more nuanced answer was likely in part due to her own patient subset, which included patients on the far edges of the typical presentation. I am a doctor myself, and my perspective on certain conditions is greatly influenced by the patients I have seen.

This alone was valuable information to know, but even better, at the close of the morning session, Professor Needham came up and spoke with me. She told me I am likely being under-treated and gave me information on how I can get a higher dose of IVIGs. My myositis has been complicated by a fungal lung abscess, which makes throwing ever more immunosuppressant medications at me less than ideal.

With my muscles aching and exhausted, we headed home at lunchtime, feeling a sense of validation and connection. I now knew what was possible and even better, didn’t feel like I was a patient who didn’t make sense.

I am so thankful for the whole team who spent the week travelling the length and breadth of Australia, sharing their knowledge and listening to our stories. Knowledge gives me power to fight for answers, but being listened to is healing even without answers.

“Research on the road. Connection at every stop.”