The stories shared by those we photographed in Greece really drove home the burden of skin disease. What these women have gone through as a result of their diseases is unimaginable.
Our first shoot was with Stavroula who was diagnosed at the age of nineteen with a rare, chronic skin disease called Hidradenitis Suppurativa. She tragically waited a year before seeing a dermatologist, too scared to reveal the impact it was having, keeping it hidden beneath her clothes.
“I was bedridden for one and a half years with bleeding, my body full of wounds and unable to recover, with no social or personal life. So I ended up being very introverted, marginalized, I couldn't participate in anything and there was no help from anyone. Pain and loneliness were eating me alive. With my body filling up with wounds and slowly becoming unrecognizable, I began to lose myself. The pains were terribly strong despite the high doses of opioids. No matter how much I cried, no matter how much I struggled, I remained trapped in this skin with time passing painfully over me. I will never forget that kind of pain.”
No matter how much I cried, no matter how much I struggled, I remained trapped in this skin with time passing painfully over me.
Stavroula contemplated suicide, she planned in detail how she would do it, but it was the love and care of her father and mother that saved her life as much as it was the care she received from her dermatologists. During the shoot Stavroula’s father came home, he spoke about the challenges the family had faced during their time caring for Stavroula, he spoke of her desire to find her independence after so many years relying on her parents. The relationship between father and daughter was a special one, to have come through such a painful experience together has formed a bond so powerful that the challenge now is to break it so Stavroula can now forge her own path.
Our second shoot was with Maria who has Bullous Pamphigoid, a disease that causes the skin to blister with pain and itching that makes it uncomfortable to even wear clothes, unable to find any position to sit or lie down that isn’t painful.
“I have memories from my childhood when I loved to be in nature. But now, because of my skin disease I am stuck in my home. It is hard to walk, it is hard to move from my chair. This has changed my life. The truth is that everything has changed. I cannot have a relationship with a partner. Even spending time with friends is hard as I need to wear creams all the time and I am embarrassed. I stay naked in the house as I need to be covered by creams. I can only wear cotton. I itch all the time.”
I have memories from my childhood when I loved to be in nature. But now, because of my skin disease I am stuck in my home. It is hard to walk, it is hard to move from my chair. This has changed my life. The truth is that everything has changed.
Before heading to Greece I had asked Tasoula to imagine a painting that represents her experience with skin disease. She described a volcano representing the burning pain she had suffered for forty years, but in that painting she had escaped that pain, with calming, rolling waters around her. Looking towards a future without surgeries, steroids and endless discomfort. To achieve this we took a family trip to the beach with her husband and son. We photographed Tasoula standing in the shallow waters of the Aegean Sea, her pose and expression capturing the strength she posses and the image of hope she wishes to portray to others who are experiencing similar challenges in their lives.
International Women's Day
Our final shoot was with Tasoula. Sometimes it is hard to get our work done because the person we are supposed to photograph has prepared so much food for us that hours are spent eating and talking. Producing film and photography projects can often feel like a rushed experience. The value of sitting down and sharing a meal together first is well worth the time lost with a camera In hand. After moussaka, taramasalata, dolmades, wine and multiple deserts Tasoula removed her shirt and showed us a patchwork of scars that covered her body. I asked her to pose in front of a terracotta coloured wall next to her kitchen. Years ago, when I decided to only work on positive impact projects, the simple, foundational approach was to capture images of people like Tasoula in a way that commercial photographers would photograph celebrities. To observe and portray courage and resilience in the same way others might idolise fame.