Niko Suvisto
I am Niko Suvisto, 33 years old (b. 1991), and I live in Finland. I suffer from a severe form of the complex neuroimmunological disease that is ME/CFS. Like many others, my illness began subtly after an infection in 2015. Year by year, my condition slowly worsened until I lost my ability to work and eventually became 99% bedridden.
I had to move back to my childhood home because my mother is the only person who can take care of me. She should be enjoying her retirement years, but instead, she works as my full-time caregiver. I am trapped in my bed and, since arriving here, I haven’t even seen my room downstairs. That room is now mainly a storage space for the belongings that followed me here.
Like countless other patients, I have lost a lot due to ME. Your world slowly shrinks smaller and smaller—for the most severely ill, it diminishes into nothing but an endless darkness—they are trapped in the shadows of their rooms. Even in its mild form, the illness is highly life-restricting.
Despite these losses, I have also found new things and meanings in my life. I discovered photography in 2017. It has become a way to escape reality, but just as much a necessary tool to process it. My biggest dream was to photograph and document other ME patients—to tell their stories. Unfortunately, this is not possible, so I turned the camera on myself and began documenting my own life.
For years, I only told my family and closest friends about my illness. The stigma that brands ME patients is immense. It is often difficult to receive understanding from healthcare professionals or from those you would expect to help us. When my illness was at its worst, I even feared for my life. That experience woke me up. After that, I thought I had nothing left to lose. I no longer cared about the overwhelming stigma. I wanted to start speaking openly about my illness.
In 2024, I decided to fully commit to this and started openly sharing my photos and my story on social media. My hope is to raise awareness about the illness through my images and help bridge the gap between us patients and the rest of the world. I believe that art, in any form, has the power to influence people—it has been that way throughout history.
