Lily’s story
When I was sixteen, I became unwell, and instead of recovering as expected, my life changed irrevocably. Days of rest turned into weeks, then months, as my health declined without explanation.
By eighteen, I was diagnosed with severe myalgic encephalomyelitis (ME). What followed were six years almost entirely confined to bed. My world shrank to the size of my bedroom. I lived in silence and darkness, unable to tolerate light or sound, unable to read, speak, or move much at all.
Those years were unimaginably difficult. The physical pain and fatigue were relentless, but the loneliness and invisibility were just as difficult. Life continued outside my window while I lay still, watching time pass. I lost my independence, my voice, and the sense of who I was. Within that stillness, I learned what it means to endure, to hold on even when there is no clear path forward.
Becoming unwell
Beginning again
After around eight years of illness, including six years spent almost entirely confined to bed, slowly, with medical support, time, and care, I began to regain small parts of my life. Being able to sit up, to see sunlight again, to have a conversation, each step felt monumental. Recovery has not meant returning to who I was before. It has meant learning who I am now, and building a life from there.
One of the most special milestones in my recovery was my first swim. After years of being confined indoors, the feeling of water on my skin and sunlight on my face was overwhelming in the best way. I remember floating in my dad’s arms, weightless and surrounded by quiet, and realising how much I had missed: the texture of the world, warmth on my skin and the sound of movement.
Returning to the world
Life now holds more complexity than I ever imagined, but also more depth. Recovery hasn't followed a clear path, and returning to the world has involved much more than simply becoming physically capable of doing things again. It has meant learning who I am now, grieving the years that disappeared, and slowly building a life from where I found myself.
Sharing my story has helped me make sense of what I went through and connect with people who understand parts of that experience. I still speak about illness because those years shaped me profoundly, and because millions of people continue to live lives that are poorly understood or barely seen.
But illness is no longer the whole of my life, or the whole of my work. I write, create and speak about the strange process of building a life again, and about the things that now fill that life: clothes, books, food, friendships, work, culture, humour and the ordinary beauty of being in the world.
For information and resources on ME/CFS, visit Emerge Australia.
Follow Lily on TikTok
@lilygschubert
70K+ followers | 5M+ likes
