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
After eight years of illness, 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.
Six years in bed
Returning to the world
Life now holds more complexity than I ever imagined, but also more depth. Healing hasn’t followed a clear path, and I’ve learned that strength often exists in quiet moments. Sharing my story has helped me make sense of what I went through and to connect with others who understand the weight and beauty of survival.
Now, as I share my story, I do it for the people who are still where I once was. For me, it is both a way to honour the years I lost and to help create a world where no one has to disappear the way I did.
Today, illness remains part of my life, but it is no longer the whole of it or my work. I write, create and speak about the strange process of building a life again. I also share the things that now fill that life: clothes, books, food, friendships, work and the 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
