Niko Suvisto
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nikosuvisto.com
Niko Suvisto
@nikosuvisto.com
990 followers 560 following 860 posts
Life on hold by severe #MECFS, currently 99% bedbound 🛌

Documenting my life like it is now, advocacy through photography 📷

📍Finland

https://nikosuvisto.com/
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nikosuvisto.com
Every morning, I wait in the darkness for my mother to open my room’s door so that we can start the daily routines.

#MECFS #SevereME #pwME #Photography #SelfDocumentary
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.
November 15, 2025 at 1:19 PM
nikosuvisto.com
We need to raise this kind of awareness, because we don’t have other choices. Most of us are too sick to participate in protests or go out into the streets to demand change. So, we do our best on social media and through other accessible means. 8/10
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.
October 21, 2025 at 7:22 AM
nikosuvisto.com
I need this work, and I have always made it for myself first and foremost. It’s my escape from the agonising reality — a way to take distance and observe, rather than feel it all. It gives me purpose, so my suffering isn’t in vain. 5/10
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.
October 21, 2025 at 7:22 AM
nikosuvisto.com
It’s an understatement to say this work is deeply personal, it truly is my whole life. These photographs are me. 2/10
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.
October 21, 2025 at 7:22 AM
nikosuvisto.com
It has been one year since I started sharing more openly about my life with severe ME/CFS. I chose to do it through my photography, resulting in my ongoing series ‘Enduring: Life with Severe ME/CFS’. 1/10

#MECFS #pwME #Photography #SelfDocumentary
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.
October 21, 2025 at 7:22 AM
nikosuvisto.com
As the days go by, I settle back into my strict routines, with a taste of life still lingering in my mouth. It’s always a mix of emotions; the good and the bad. Thank you to my friends for being there for me, and until next time. 9/9
A black and white photo of Niko’s point of view from his bed. The room’s curtain is halfway closed. The light that’s coming through illuminates three flower bouquets. One is sitting on top of a record player, other two are on stools.
October 5, 2025 at 2:50 PM
nikosuvisto.com
Cheerful chatter fills the room, as if we had just seen each other yesterday. I don’t feel like an outsider; we talk about very ordinary things, which is such a welcome change. Their children shuffle in and out of my room but prefer to play with their toys outside. 3/9
A black and white photo of Niko’s point of view from his bed: his feet are resting on the bed, while a woman is standing in the left side of the image. She’s holding a child with her hand. A man looking at her sits across the room. Natural light comes into the room through a window. In the background there are personal belongings and artworks hanging on the wall.
October 5, 2025 at 2:50 PM
nikosuvisto.com
Now, suddenly, my room is full of people, the familiar faces of my friends gathered around my bed. For a moment, it feels overwhelming; I can sense my body crossing the threshold — this is definitely overexertion. 2/9
A black and white photo of four men sitting together. They each look at a child that’s talking to one of the men. Natural light comes into the room through a window.
October 5, 2025 at 2:50 PM
nikosuvisto.com
It was my birthday two weeks ago, and I managed to celebrate it with my friends. I hadn’t seen them all year because my health hasn’t allowed it. My days are spent in isolation; usually only my mom visits my room throughout the day to carry out her care duties. 1/9

#Photography #MECFS #pwME
A black and white photo of a flower bouquet on a record player, next to a window that illuminates natural light inside the room.
October 5, 2025 at 2:50 PM
nikosuvisto.com
This week something very exciting happened… My mom came to my room to wash my windows. That’s probably one of the top three action-packed things that has happened this year.

I had to photograph it as I love documenting the ordinary.

#MECFS #Photography
A black and white photo of an older woman washing an opened window inside a bedroom. She’s facing the camera and reaching with her hand to wash the upper part of the window. Light comes through the window. Personal belongings are visible on a shelf.
October 4, 2025 at 11:27 AM
nikosuvisto.com
Today is my birthday, and I’m turning 34. Do I feel my age? No. The perception of age vanished at some point while I became chronically ill. Still, there are fleeting moments when I’m reminded of it. 1/9

#MECFS #pwME #Photography
@openmedf.bsky.social
A black and white photo inside a white frame: Niko, a white man with dark buzz cut hair and a beard, lying in bed. His head is resting on a pillow, and he’s looking at the distance. He’s wearing a grey sweatshirt.
September 20, 2025 at 4:26 PM
nikosuvisto.com
What will my health be like next year? Will I see that playful light again? Will I tolerate it? Will I be able to photograph those fleeting moments? I can’t answer those questions, only time will tell. 3/8
Black and white photo of a window with blinds partially open, letting light fall across a white wardrobe, creating strong contrasts of shadow and brightness.
September 15, 2025 at 2:47 PM
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The last rays of summer sun have now left my bedroom. It’s funny how aware of these things you become when trapped inside one room. It will be a while before I can see that evening light casting dancing shadows on the wardrobe doors again. 1/8

#MECFS #pwME #Photography
Black and white photo of tall white wardrobe doors, with sunlight casting reflections of trees from outside, forming abstract patterns on the glossy surface.
September 15, 2025 at 2:47 PM
nikosuvisto.com
I hope that one day there will be more light than dark, for all of us.

All photographs part of my series ‘Enduring: Life with Severe ME/CFS’. 2/2

#Photography #MECFS #pwME #SelfDocumentary
A black and white high contrast photograph showing a ray of light against the ceiling of a dark bedroom. A high contrast black and white photo of a painting on a wall. The painting is a landscape of a house. A window casts abstractly shaped shadows over the wall. A high contrast black and white photograph of a wall lamp without its shade. The light bulb lights the otherwise dark surroundings. A black and white photo of a dimly lit bedroom. Niko, a man with a jumper and sweatpants, lies on the bed. He has ear protectors on and his eyes are closed. A chair beside the bed holds medical equipment, personal items. The door to the room is open and illuminates light from a hallway.
August 31, 2025 at 7:31 AM
nikosuvisto.com
Light and dark; two things that co-exist in our lives.

It’s easy to look at the dark parts and think that they are the ones that weave themselves tighter into the canvas.

The light always reveals what is hidden, but we need the dark to give us the shapes and forms against the light. 1/2
A high contrast black and white photograph of a woman 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.
August 31, 2025 at 7:31 AM
nikosuvisto.com
In the moments I’m with her, I forget I’m sick — she takes all the pain of this world away. Every night, she’s the last thing on my mind; every morning, the first. I feel at home with her. 8/8
A collage of two photographs. On the left side there is a white woman in a dark room, her head rests on a pillow and her eyes are closed, she’s smiling and she has a sleep mask on her forehead. She’s wearing a black and white striped shirt with text on it. On the right side there is a white man with dark buzz cut hair and a beard, his head rests on a pillow and he’s looking at the camera with a smile on his face. He’s wearing a red and white striped shirt.
August 18, 2025 at 6:40 AM
nikosuvisto.com
I’ve not been doing that great this summer. In all honesty, these past years have been extremely hard, and my body has given up on me. In the end, I’m just grateful I’m still here to experience life. 1/8

#MECFS #pwME #Photography #SelfDocumentary
A black and white close up photograph of hands against a dark background, resting on a person’s body. The thumbs and fingers form a heart shape in the middle.
August 18, 2025 at 6:40 AM
nikosuvisto.com
POV: You are bedbound and need a wash.

I haven’t had a shower yet this year, which feels a bit surreal, if I’m being honest. I could do it, but it just isn’t worth suffering so much, as it would trigger a huge PEM (post-exertional malaise). 1/2

#MECFS #Photography #SelfDocumentary
A black and white photograph in a point of view of a person laying in bed, while an older woman is hovering over and washing the person’s extended arm with a cloth while she holds the person’s arm with her other arm.
August 13, 2025 at 2:07 PM
nikosuvisto.com
On this Severe ME Awareness Day, I present to you my newest exhibition: “In the Absence of Light”. 1/3

www.aquietstorm.me/in-the-absen...

#MECFS #SevereME #SevereMEday #pwME #Photography
A black and white photo of a hand resting on a pillow, lighted by a flash in an otherwise dark bedroom.
August 8, 2025 at 6:42 AM
nikosuvisto.com
I’ve not posted here for a while now. I’ve not felt good this summer, and I still don’t. Opportunities for self-portraits or meaningful photos have been mostly absent.

Although I did took this one earlier, and wrote some words.

#MECFS #pwME #Photography #SelfDocumentary #Enduring
A black and white photo of Niko, a man with a dark beard, lying in bed. In the foreground a pillow is shown. Middle ground is Niko with his head on a pillow, looking at the camera, having his hand on his cheast. Background shows white cabinet doors and two basketball jerseys hanging on them.
July 28, 2025 at 3:53 PM
nikosuvisto.com
It wasn’t any regular Wednesday morning, exactly three years ago, as I woke up trapped in my own body. Not knowing I wouldn’t even be able to bear a ray of light entering my bedroom or endure the touch of another human being. 1/13

#MECFS #VerySevereMECFS #Photograpghy
A black and white close up photograph of Niko’s face, a white man, with a dark beard, resting his head on a pillow, wearing an eye mask and ear muffs. The image is distorted on the sides of his face, a ghostly effect that makes the ear muffs appear twice.
June 8, 2025 at 11:07 AM
nikosuvisto.com
Our living room. So near, yet so far it seems. For this past year, I’ve only visited it once, during Christmas time, as I photographed our Christmas tree (a tradition of mine).

This time, I took the photo quickly during my trip from the bathroom. My mother was putting away the winter carpets. 1/2
A black and white photograph of a living room with a wooden floor and a wood paneled ceiling. Two rolls of carpets lay in the foreground, while the background shows a window and a sofa. Visible are part of a bookshelf on the left and part of a lounge chair on the right. There are a lots of small details and personal items, paintings on the walls and a ceiling lamp.
June 1, 2025 at 7:36 AM
nikosuvisto.com
A rare photograph outside of my room.

Part of my series ‘Enduring: Life with Severe ME/CFS’.

#Photography #SelfDocumentary #MECFS
A black and white photograph showing a view in a small bathroom. Daylight coming through the small window, belongings on a shelf, a large pipe in the middle of the photo, a mirror cabinet showing a reflection of the room and a small picture of a kitten hanging on the opposite wall.
May 25, 2025 at 7:15 AM
nikosuvisto.com
Our works hang side by side on the gallery walls, while we lie in our beds or on our sofas around the world. Some in completely dark rooms, because the illness is so severe. 3/6
A colour photo of an exhibition setting; different artworks hanging on the gallery’s walls. In the middle of the photo is Niko’s photograph ‘Wired and Tired’ in a black frame.
May 12, 2025 at 8:10 AM
nikosuvisto.com
Today is the official ME/CFS Awareness Day.

To mark the occasion, my photograph ‘Wired and Tired’ has been on display in the Awareness Day exhibition (un)sichtbar [(in)visible] in Frankfurt. This is the first time my work is being exhibited in this way. 1/6

#MEawarenessDay
#MECFS
#Photography
A black and white photograph of a man, Niko, resting his head on a pillow. His hand is in the foreground laying against the bed. His face appears blurry and distorted in the background.
May 12, 2025 at 8:10 AM