Enduring: Life with Severe ME/CFS

Enduring: Life with Severe ME/CFS is my ongoing self-documentary project about living with an underfunded and highly stigmatised serious chronic neuro-immunological illness.

I originally wanted to document others living with ME/CFS, but systemic neglect and the unforgiving nature of the disease have left me 99% bedbound for over three years and counting. People suffering from the illness are almost always left without adequate medical or financial support; the situation is dire across the world.

I felt I had no other choice but to turn the camera on myself—to give meaning to a life not lived, and to raise awareness about this matter no one talks about: ME/CFS, which English journalist, author, and activist George Monbiot describes as the greatest medical scandal of the 21st century.
A black and white photo of a man, Niko, lying on a hospital bed, hands crossed on his chest, under a duvet, and wearing an eyemask and earmuffs. The room has framed pictures and personal belongings. A mirror reflects a woman, Päivi, closing the curtains.
A high contrast black and white close-up of a man, Niko, resting his head on a pillow, gazing outside the frame. High-contrast lighting highlights his facial features, including his Roman nose, while the rest of the environment remains dark.
A black and white photo of Päivi, a woman, with short, curly hair, standing in a dimly lit room holding a wine glass. She leans on a wheelchair. Her shadow falls on white cabinets. A window with blinds reflects another silhouette.
A black and white photo of three medication bottles on top of a bedframe, the light illuminates the bottles in an otherwise dark bedroom. A wall lamp and a frame is also part of the picture.
A black and white photograph of a man, Niko, resting his head on a pillow. His hand is in the foreground lying against the bed. His face appears blurry and distorted in the background.
A black and white photo of an empty bed, which shows the dip of a human silhouette. A wheelchair, personal belongings, and a window are seen in the background.
A black and white photo of a medication syringe full of liquid medication, placed in a shot glass. In the foreground are a roll of toilet paper and a CPAP machine.
A black and white photograph of a dark bedroom floor. The light peeks through under the closed door, lits part of a wheelchair and a cable running across the floor.
A black and white photo of a woman, Päivi, giving a haircut to Niko, who is lying in a bed. She uses clippers with a focused expression. The bedroom has cabinets in the background and a bedside lamp.
A black and white photo of a woman, Päivi, looking outside of the frame as she prepares to wash a man’s, Niko’s, feet as he lies on a bed his feet in a basin wearing just boxers. The room features white cabinets and is a bedroom.
A black and white photo of a dimly lit bedroom. Niko, a man with a shaved head and beard, lies in bed under a blanket, looking at Päivi, his mother, who stands in the doorway, lit by another room. A chair beside the bed holds medical equipment, personal items.
A black and white photograph of a shirtless man sitting on a bed, curled up with his arms wrapped around his knees and his head down. The room has white cabinets in the background, and the setting conveys a sense of isolation.
A black and white high contrast photograph showing a ray of light against the ceiling of a dark bedroom.
A black and white photo of Niko sitting upright in bed, eating from a tray table while wearing a sweater. Päivi, in a winter coat, stands in the open doorway looking in. A CPAP machine and medical equipment are beside the bed.
A black and white photo of a man, Niko, with short hair and a beard, wearing a grey sweatshirt, resting in bed and listening to music eyes closed from wired headphones. Headphones are connected to a DAC/Amp. His hands resting on his chest.
A black and white photograph of a woman, Päivi, standing inside a dimly lit room, leaning forward to look out of a window. The window reveals a snowy landscape outside, while the room is filled with furniture, books, and various objects.
A black and white photo of a cluttered chair with an electric toothbrush, water bottle, paper towel roll, pill organizer, and other personal items. A wheelchair is in the background.
A black and white photo from the perspective of Niko lying in bed. A woman with a bun sits near the bed. A bearded man stands with arms crossed. A young child with pigtails climbs a stool between them. A wheelchair is in the background.
A high contrast black and white photograph of a completely dark bedroom. A long and narrow ray of light peaks through the corner of the curtain covered window. The silhouette of the window is seen through the curtain.
A black and white photo of a man with a dark beard and short hair, Niko, lying in a dark bedroom, in bed with his eyes closed. He is wearing an eyemask and earmuffs. The light comes from the side and lits half of his face.

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