Enduring: Life with Severe ME/CFS
by Niko Suvisto
There was a time when I couldn’t take photos with my camera. That was when my ME/CFS was at its worst. This lasted for over a year. I recovered slowly, and I remember the first time I picked up my camera again—the weight of it felt overwhelming in my hands. My cognition wasn’t at its best either; it felt as if I had to relearn how to even use the camera. Gradually, my situation improved, and photography started to feel natural again. I was extremely happy about this.
I have been creative since childhood, but at some point, I lost that—life just happened, and creativity was left behind for years. Through my illness, I found my way to photography. At the moment, ME poses significant challenges for my craft. On the other hand, these limitations have also fueled my creativity. My mind is full of different ideas, but my body doesn’t allow me to execute them. It’s frustrating.
Still, I try to bring my ideas to life little by little. Photography is a way for me to process my situation; it’s also a way to distract myself. Taking photos requires 100% focus—it brings you into a state where everything else fades away. For a brief moment, you might forget that you are seriously ill—there is only that instant when the camera’s shutter clicks—CLICK.
These photos are primarily for myself. They help me cope with my difficult situation. They are a documentation of my daily life and proof of what I have to endure. Through my photos, I want to show the reality in which a person with severe ME lives.
The Routine
The routine. Every ME patient knows exactly what I mean, though not everyone is lucky enough to have one. I am lucky—the irreplaceable help of my mother, Päivi, is the reason I can maintain a routine.
The more severe the disease, the less wiggle room you have. The less you can live, the less you can be spontaneous. The more severe the disease, the stricter your routine has to be, the more time you spend resting, and the more you struggle just to exist.
Routine is a necessity, the most important thing in my life—it protects me from deteriorating further.
Good Night
Every night, when all is done for the day, my mother closes my room’s door, and we say “good night” to each other.
A Mother, a Caregiver
My mother is my sole caregiver. In this picture she came to my room to celebrate the New Year’s Eve.
Wired and Tired
You know you overdid it. You feel the adrenaline surge filling your body. You can’t find a moment of peace. That feeling is deceptive—your body craves for more exertion. It’s as if ME/CFS is seducing you in some twisted way to cause even more harm to yourself. It’s an easy trap to fall into. Resting and calming down feels impossible. You are wired and tired.
I hate that feeling with all my heart. I just want to get up from my bed and run. Run as far and as fast as I can until my body finally collapses for good. Until it just ceases to exist, and there is peace. That’s how overwhelming it feels at its worst.
Feeling Fresh
My mother washes me in bed every two weeks because taking a shower is rarely possible. After the wash she changes the sheets of my bed. I have an electric hospital bed, as I’m pretty much bedbound. The mattress is also a special one to reduce any pressure ulcers, but I’m lucky that I’m able to change positions myself. The mattress is big and heavy—my mom has to wrestle with it to get the sheets in place.
Numb
You have to detach yourself from the reality because it’s too painful to live like this. ME/CFS does this to you—it makes you feel empty. It’s not enough that it takes your physical abilities; it also takes away your feelings, your connection to yourself, and your relationships with others, like your family and friends. It creates great barriers between those things—barriers that take immense effort to climb over. The climb can be terrifying because you have to face the harsh reality of it all.
Most of the time, I feel almost nothing. No joy, no sorrow. I’m just a hollow shell. I stare into the void, and it stares right back at me. I hate that it’s like this. You lose so much of life, as there is no room for feelings. There’s no room for grief either.
In January of 2022, my father passed away from cancer. I’m not even able to visit his grave. I grieved his passing as it happened, but as my health deteriorated, my ability to grieve somewhat faded away. Sometimes I feel guilty about it, and I don’t know where I stand on that topic today.
To feel, you have to live in the present. You need a connection to yourself and to everything happening around you—to life, with all its beauty. But life feels like something I only glimpse fleetingly, as it goes on without me. Life itself becomes a painful reminder of my situation.
The numbness is agonizing in and of itself. I float in a never-ending emptiness. I try to reach out and hold on to something, but everything slips away from my fingertips. The small glimpses of life—my family, my friends, my connections to other people—are what keep me from being drained entirely.
Unable to Walk
I haven’t walked since 2022. My mom pushes me in the wheelchair, if I need to leave my bed, which only happens a couple of times in a week.
Yet Another Thing Lost
We have to keep my hair short, so it’s easier to maintain it in the bed.
Washing the Hair
We wash my hair every week—usually on Mondays.
Despite washing my hair, my scalp keeps bleeding and stains my pillow.
Friends Visiting
My friends have always been there for me. I would love to see them more often, but sadly it’s not possible. The passage of time is strange for me—it seems like it just stands still. Although my friends children grow each visit.
Music Takes Me to Places
I try to listen to music every day. It’s one of my greatest joys in my restricted life. I can’t travel anymore—heck, I don’t even leave my bed most days—but music takes me to places. Places far away and out of my reach, places I’ll probably never see in my lifetime. Still, I cherish these brief moments of escape during my days.
Treatments
United in Suffering
ME/CFS patients have been neglected for decades. Our rights have been and continue to be violated. We are constantly gaslit by medical professionals and other institutions that should be helping us. We advocate for better treatments, adequate support, and even just basic recognition of our illness. And we do all of this from our sofas and beds—or whatever place we “rest.” The most severe would like to shout from their darkened bedrooms, but all we can hear are their silent whispers.
I see that struggle and survival everywhere. All my friends are going through it. They are fighting for the most basic support. Is that really too much to ask?
It’s heartbreaking to watch a friend deteriorate. They try to do everything right, but it’s not enough. You want to help, but all you can do is listen and hope for the best. Another friend, whose welfare support was already minimal, has it cut off entirely because they can’t physically leave their home to visit an employment office. See, we don’t even have access to the right welfare benefits. Here in Finland, we are deemed fully fit to work. And if you don’t have the proper medical certificates (good luck getting those), they will simply treat you as a healthy, unemployed person. That’s a huge burden to bear when you’re just trying to survive each day.
After years of fighting the system, you will likely lose your mental health, too. And that’s when things become dangerous. I have fought hard for my own rights—way too hard. It has cost me a huge chunk of my already limited ability to function. The fight for rightful welfare was one of the reasons I became severe. It has left me sad and angry. I have completely lost faith that society takes care of its most vulnerable. It just doesn’t.
It’s estimated that up to 90% of people with ME remain undiagnosed, and 29% of those who are diagnosed waited five years or more for an accurate diagnosis. I waited six years, and even then, it was only because I saw a private doctor. So much suffering could be avoided with early diagnosis and proper support. I would probably still be mild, maybe even partially able to work, but that doesn’t matter. In the end, you are on your own.
We have done everything we can. We have advocated and fought—far harder than the institutions responsible for helping us. It’s time for them to act accordingly.
About the Exhibition
Enduring: Life with Severe ME/CFS is an ongoing series by photographer Niko Suvisto. The series began in 2024, and the photographs in the exhibition were taken between 2024 and 2025.