In August 2023, I experienced a day that will be forever etched in my memory—a day that changed my life forever. After months of medical testing and uncertainty, I finally received an answer. I knew it was going to be life-changing news, but at that moment, all I cared about was knowing what was wrong with me. On that day, I was diagnosed with a rare type of Myositis called Immune Mediated Necrotizing Myopathy (IMNM), also known as Necrotizing Autoimmune Myopathy (NAM).
IMNM is marked by a malfunctioning immune system that mistakenly attacks muscle tissue, causing cell death (necrosis). There is currently no cure. Treatment focuses on managing the symptoms. IMNM can be challenging to treat with standard immunosuppressants compared to other inflammatory types of myositis. It is generally considered more aggressive in its disease processes.
Navigating this new landscape felt lonely in the beginning. My diagnosis was rare—one that few other patients shared. Many doctors and nurses were unfamiliar with my disease, and the treatments and medications I received were not commonly administered to other patients. I was the only person in my family with an illness like IMNM. I felt like I didn’t belong anywhere with IMNM. I felt deserted.
Having a diagnosis after months of limbo was exhausting, but now I could use the label of my disease to begin navigating what I would soon learn was a winding and complex road in the medical world.
I found myself grappling with the reality of living with a rare disease, trying to comprehend the complexity of navigating the healthcare system, and coming to terms with the daily challenges of managing a chronic, invisible illness. One of the most confronting aspects was facing the stark shift from enjoying good health to suddenly living with a permanent disability. This transition brought with it a profound sense of loss and uncertainty, as I tried to adjust to a life that looked so different from the life I had always known.
In those early days, I clung to hope like a lifeline. I told myself that this was just a detour, a temporary challenge I would overcome. But deep down, a quiet voice whispered that life would never be the same. That voice grew louder with each passing day, and eventually, I had to listen. I had to accept that IMNM wasn’t just a chapter in my story—it was a rewrite of the entire book.
The challenge of managing a life-altering diagnosis is difficult enough, but receiving a rare diagnosis adds more complexity. The scarcity of medical literature, the limited experience and exposure among practitioners impacts rare disease outcomes. IMNM was so rare—were there any medical experts who could help me? I felt adrift, lost in a fog, unsure where to turn. After weeks of searching through medical journals and patient stories, I discovered a hidden gem. A specialist in my state who was recognised for their work and research in myositis. I couldn’t believe my luck; I felt a renewed sense of excitement and hope. I wasted no time in contacting the clinic—practically begging for an appointment.
I soon learned how different everyone’s experience with IMNM can be. The impacts of IMNM vary and there was no clear path, no timeline, no way to know what lay ahead. Instead, I was faced with a broad spectrum of possibilities as someone diagnosed with IMNM. The uncertainty was frustrating and exhausting. Some people achieve remission, some don’t need medication and some almost lead a normal existence. Others, however, require full-time care or are permanently wheelchair bound. Some need oxygen supply around the clock, and some pass away. The reality of IMNM was much more winding, and unpredictable than I had hoped.
The remainder of 2023 was mind-boggling. One moment, I was healthy and living a normal life; the next, I am a patient—assigned a number within the public health system. This change was abrupt and jarring.
Adjusting to my new life with IMNM, I found support through connections made during volunteer work. Interacting with others, either via research teams or through advocacy in rare disease groups, helped me feel a renewed sense of community and accomplishment. This involvement expanded my outlook and proved that my life could remain meaningful and rewarding, despite the ongoing challenges of chronic illness. Before IMNM, I saw myself as someone who supported causes quietly, from the sidelines. Living with a rare and often misunderstood illness changed my mind. I found my voice through advocacy, which became a necessity, not just for myself, but for every person navigating life with a rare disease. It gave me a renewed sense of purpose and hope.
Supporting others, especially those who were newly diagnosed, quickly became a source of fulfilment for me. Although I was not yet a seasoned veteran, I could easily relate to the uncertainty and emotions that accompany the early days of diagnosis. It highlighted just how vital it is to have people from the rare disease community by your side—something I had lacked in the beginning but am now immensely grateful to have found. With help from support groups and rare disease communities, I gained the confidence to share my journey and write about living with IMNM.
Looking back, I realise how much I underestimated the road ahead. I thought I could out-organise it, out-plan it, out-think it. But IMNM doesn’t play by rules. It doesn’t care about calendars or routines. It arrives like a storm and stays like a shadow. I’ve had to learn to live in the grey—to find light in the darkest clouds, and to redefine what strength looks like.
Facing IMNM was terrifying but I realised I had a choice: surrender to the chaos of IMNM, or dust myself off and confront this monster head on and that’s what I did.
Vivienne Greene’s words became my mantra.
“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
I decided I wouldn’t wait for the storm to end; I would learn to dance through it.
