PAULINA PIWOWARCZYK-BOLSĘGA My son is seven years old. He has asked me several times if I am going to die. Now he understands that his mum is ill, and that you don’t simply die for no reason. The hardest thing for me is seeing his fear. Knowing that he has to watch me go through this.“Mom, why do your joints hurt? You haven’t walked much, and you haven’t been cold, have you?” — these are the kinds of questions my child asks me.His smile makes me happy. In those moments, I don’t want anything more.
PAULINA KRYSZCZYŃSKA It was 2011. I worked Monday to Friday, and went to school on weekends. I always tried to stay active and present. Until one day, it felt as if someone had suddenly cut off my power. I couldn’t get out of bed. Then there was pain between the vertebrae in my chest. I was getting weaker and weaker, but I didn’t pay attention to what was happening to me — I was too busy. When you hear the word “rheumatism,” you imagine bent elderly women with crooked fingers. You don’t realise that there are hundreds of types of autoimmune diseases. Even when you receive your test results, it doesn’t immediately sink in that you are seriously ill and will never fully recover.
DRIANNA CZECHOWICZ “My hands don’t look like that.” I have slender hands and long fingers. In addition to AS, I have psoriatic arthritis, which caused my nails to come off and made my fingers look swollen and knobby. “That swollen, crooked finger isn’t mine.” I’m a graphic designer. I make reality look better. I don’t identify with my illness. No one at work knows that I’m sick. They only know that I have rheumatism — which doesn’t really mean anything to most people. Most people don’t want to know. And I would rather live than spend my time explaining my illness.
MACIEJ ZDUNEK I’m afraid of what this disease is capable of, especially because I’ve seen a great deal of suffering and pain. It’s difficult to reconcile the images I remember, my awareness of the disease, and my professional experience. Until now, I was on the other side. I was the one providing help. Now I’m the one who has to ask for it and look for it. Do you know what is both incredibly stupid and incredibly brave at the same time? Having AS and sneezing after waking up during a flare-up. You didn’t get it? You’re not laughing? You’re healthy.
ALEKSANDRA SERAFIN Imagine freezing in a position where the pain is right on the edge of what you can endure — just before you faint. Neither moving one way nor the other. Unable to relax, unable to stand up. Just staying there, through clenched teeth. I owe the most to my mother. She pushed for a quick diagnosis, and we managed to get one within three months. Thanks to her, I am where I am today and feel stable. She is the one who stays by my side when I fall apart.
ZBIGNIEW GRABOWSKI What hurts the most? Admitting the illness to yourself. Losing the ability to do things was difficult for me to accept. I had to come to terms with the fact that there were certain things I could no longer do. What good were strong hands and a willing mind when my spine couldn’t keep up? And pain — it’s normal that it’s there. Just as it’s normal for a person to die.
KATARZYNA BROMIRSKA I don’t feel the need to ask myself, “Why me?” I know I wouldn’t get an answer anyway. I have three daughters and a son. My family, children, and husband are my priorities, not my illness. I wanted to have a family at any cost. The disease didn’t take that away from me, and I won’t give it up. Pregnancy was terrible. I couldn’t sit or stand. I barely slept. A few weeks before my due date, I begged my gynecologist to induce the delivery early. What keeps me going? The fact that I have no choice. I think constant activity keeps me going and keeps me on my feet. When things get really bad, I tell myself: “Don’t give up, Mom.”
KATARZYNA WOŹNIAK “Your pain can’t be real — you’re too young. You suffer from spinsterhood.” I heard this from one doctor after another for years, while taking handfuls of painkillers like they were sweets. It was only after I temporarily lost my sight because of the disease that, after 18 years, I finally received the correct diagnosis. Earlier intervention might have saved me from disability. Fortunately, I can see again. I’ve come to terms with the possibility that one day I may no longer be able to walk. But I have to be able to see at all costs — reading allows me to live many lives over.
ALEKSANDRA PILECKA-KORYCKA That’s precisely our strength — the fact that you can’t see it. Some people roll their eyes and say, “What a scam! Where are you sick? You can’t be in pain if you’re smiling.” It only makes me smile more. The worse I feel, the more I smile. People don’t understand what an achievement it is to smile when everything inside you is screaming with pain. I’m in the photograph because I believe we need to talk about this openly: young people can suffer from pain too. Sometimes more than older people. And then there’s that word: spondyloarthropathy. So piercing. Can you even pronounce it?
VIOLETTA ZAJK An earlier diagnosis would have spared me the belief that I was going crazy. Because how could it make sense? One day my arm hurts, the next my back, and the day after that my hip. A doctor will tell you that you’re pretending. Someone who has never experienced this kind of pain will never understand you. And then there’s that damn constant fatigue. You get up after eight hours of sleep, but it feels as though you haven’t slept at all. There’s no escaping it. Your spine becomes permanently stiff. The changes are irreversible. But apart from the physical pain, the hardest part of this disease is loneliness. People distance themselves because they don’t know how to behave or what to ask. They’re only there for a while. They leave because they don’t want to know
PAULINA KRYSZCZYŃSKA Bardzo dbam o to , żeby dobrze wyglądać . Kiedy czuję się źle , za wszelką cenę nie chcę dopuścić do tego , żeby było to widać na zewnątrz . To komunikat dla mnie samej . Myślisz , że to piegi ? Wiem , są inne od kanonów urody lansowanych na świecie . To plamy soczewicowate . Leki sterydowe , które przyjmowałam , są fotoaktywne , dlatego została mi po terapii taka pamiątka . Nie wstydzę się ich . Są częścią historii , która mnie określa . Taki atlas wysp odległych , na których byłam
DON’T TURN AWAY PAIN
Photographic project and educational campaign focused on people living with ankylosing spondylitis (AS) — a chronic inflammatory rheumatic disease that can cause irreversible changes to the spine and joints and lead to permanent loss of mobility.
AS is a chronic, currently incurable disease. In advanced cases, it can result in disability, loss of physical capacity and the ability to work, as well as social exclusion and isolation.
AS often begins at a young age, and its early symptoms can be mistaken for ordinary back pain or physical strain. As a result, the disease can remain undiagnosed for years.
It is also an invisible disease. A person living with AS may appear perfectly healthy while the disease progressively affects their body, mobility and everyday life.
For this project, I selected and photographed ten people living with AS. Although they share the same diagnosis, each experiences the disease differently. I wanted to show them not simply through the lens of illness, but as individuals with their own lives, experiences and stories.
The campaign was created to raise awareness of AS, highlight the problem of delayed diagnosis, and give greater visibility to people living with an invisible disease.
The stories of the ten participants were written by Katarzyna Woźniak.