Lupus through the Lens is a photography project created by the S.L.E. Lupus Foundation using photovoice techniques. People with lupus capture, in pictures, what it means to live with lupus. *Click through the photos to read the meaningful captions and to be taken through the slideshow.
Title: The Stairs Caption: My daily challenge with lupus. Photographer: Elaine
Title: My Hat Caption: My hat is my head and face protection from the sun and its ultraviolet rays. Photographer: Elaine
Title: My Shelter Caption: Even though some may not, I embrace the clouds because I worry less about protecting myself from the sun because its ultraviolet rays are not as intense, and I can put down my umbrella. (*A significant amount of UV rays still pass through clouds, so it is important to wear sun protection, even on cloudy days) Photographer: Elaine
Title: A Healthier Choice than Soda Caption: These are drinks that taste good and there’s no added sugar. And the seltzer water satisfies my craving for soda. Photographer: Elaine
Title: Tastin’ Di Soupa Caption: I’ve added soup to my meals twice a month to replace red meat. Photographer: Elaine
Title: Life Goes On Caption: Life continues with this plant and so does life with lupus. Photographer: Elaine
Title: A Multitude of Pills in the Valley of Decisions Caption: Pills control my life. They give me power over pain. It’ a bitter pill to swallow. Photographer: I. Rivera
Title: Walk a Mile in my Feet Caption: My health conditions have twisted my bones and stolen my ability to wear the shoes that I love. Photographer: I. Rivera
Title: A Doctor’s Visit Caption: I love America. With my health conditions, if I had been in a country without good healthcare I would have died years ago. Photographer: I. Rivera
Title: I am a beggar. Caption: I beg… I beg… I beg. I beg for understanding. I beg the doctors for help. I beg the pharmacies for my medications. I beg the health insurance companies to cover the costs. I beg the MTA for accessibility. I beg… I beg… I beg…for understanding and compassion. Photographer: I. Rivera
Title: Push Through Caption: I’m not a victim. I can do it. The S.L.E. Lupus Foundation is here to help me. (photo taken at S.L.E. Lupus Foundation) Photographer: I. Rivera
Title: Rash Protection Caption: Always wear a wide-brimmed hat. Apply sunscreen. Throw some sun guard in the laundry to give your clothes UV protection. Don’t be embarrassed to use an umbrella, rain or shine. Photographer: V.M.
Title: Facing Your Opponent While Having Fun Caption: I was torn between having fun at the match and protecting myself from the sun. But I successfully managed to do both. I seized the opportunity and went to the match and protected myself from the sun. Photographer: V.M.
Caption: Managing Reynaud’s phenomenon. Photographer: V.M.
Caption: To minimize stress, I try to look for the positive side of things. Photographer: V.M.
Title: Fiber Must Caption: In order to consume my daily fiber requirements, I eat at least five servings of fruit and vegetables are a must. Photographer: V.M.
Title: Envidia de la Fortaleza / Envy of Strength Caption: El paisaje me demuestra que sin importar el clima sigue floreciendo y eso me da fortaleza para vivir con mi lupus. / The scenery shows me that no matter the weather, it continues to flourish, and that gives me strength to live with my lupus. Photographer: Juan Ramos
Title: Lo que el Lupus me Arrebató / What Lupus Robbed from Me Caption: Abandonar lo que mas me gustaba hacer por una enfermedad que no llego a comprender. / I abandoned what I liked the most for a disease that I still do not understand. Photographer: Juan Ramos
Title: El Inicio de Mi Dia / The Start of My Day Caption: Cada pastilla representa mi esperanza y mi alivio hasta que encuentran la cura para el lupus. / Every pill represents my hope and my relief until they find a cure for lupus. Photographer: Juan Ramos
Title: Mi Deseo / My Wish Caption: Mi sueño hecho realidad cuando me tengo que transportar y quisiera encontrar el vagón vacío. Hay días que con el hecho de levantarme estoy fatigado, no soporto a la gente y solo quiero encontrar un asíento vacío. / My dream will become reality on the day that I travel by subway and find an empty train car. There are days that I wake up tired and don’t want to be around people, and I just want to find an empty seat on the subway. Photographer: Juan Ramos
Title: El Sol y Yo / The Sun and Me Caption: Me da tristeza que ahora la única forma de disfrutar el sol es través de una figura. / It makes me sad that now the only sun I get to enjoy is through a figure. Photographer: Juan Ramos
Caption: The church is where I receive a listening ear, and a prayer for healing. Photographer: Elaine
Title: Beautiful Caption: Even though lupus is challenging and unpredictable, life is still beautiful and worth living. (Painting by artists Lauren Olivieri & Nick Bell, entitled Pip Helix) Photographer: Elaine
Title: The Stilt Man Caption: Living with SLE is a tall order. It can affect any organ in the body. It’s unpredictable. You have to find the right doctor, the right medication, and maintain proper weight and vitamin D levels. Photographer: Elaine
Title: Lupus vs. Dancing Caption: Lupus has cut my dancing time in half. Photographer: Elaine
Title: Options at 57th St. and 5th Ave. Caption: When I have difficulty taking the stairs, I can take the escalator or elevator. Photographer: Elaine
Title: Challenging Myself Caption: I’m having fun getting to know Brooklyn through Citibike with old and new friends. I am facing my fears at the same time. The fears are bike riding in New York City streets because of the traffic and being out in the sun. Because I have foot issues due to lupus, bicycling is the perfect exercise. Photographer: V.M.
Title: Hope Caption: After the chaos of 9/11, looking at the 9/11 Memorial gives me hope of rebuilding from chaos. It’s the same hope that I have that there will be a cure for lupus. Photographer: V.M.
Title: Seesaw Caption: Life with lupus is like riding a seesaw. There are many physical and emotional ups and downs. The symptoms come and go, but emotionally we are in constant turmoil. It’s a balancing act. Photographer: V.M.
Title: My Angel Caption: I refuse to settle. I choose not to despair, not to grow bitter but to be a better me, even with the health challenges as my body is destroyed by lupus. Photographer: I. Rodriguez
Title: My Bed Caption: My bed is my refuge, my comfort in a flare. There’s always a pillow there for me to cry on. And this is where a lot of my thinking and decisions are made regarding medications. Photographer: Elaine
Title: Do What Makes You Happy Caption: Flowers make me happy. Flower arranging decreases my tension and lessens my stress. Photographer: V.M.
Title: Woman with the Umbrella Caption: The United States is a sun-worshipping country, so I feel a bit uncomfortable walking around with my umbrella on a sunny day. In my neighborhood some people from other countries use umbrellas on sunny days as shade. Seeing this is empowering to me because I am now less self-conscious about opening my umbrella around the city. Photographer: V.M.
Caption: The two people under the shade are my speed, unlike the sun worshippers on the rock. Photographer: V.M.
Title: Dexa Scan Caption: Long-term use of and high doses of steroids can lead to brittle bones and bone loss. Dexa scan measures bone density. Photographer: V.M.
Title: The Tree in the Forefront Caption: This tree in the forefront makes me think of drug side effects, specifically when you feel like you want to jump out of your own skin and go in all different directions. It also makes me think about the chronic pain where you feel you’re bending over and going in different directions. Photographer: V.M.
Title: The Lone Leaning Fishing Pole Caption: This fishing pole brings to mind the sometimes journey of “fishing” for the right physician. But when I see the leaning pole, I also think about leaning on people for support, whether it is physicians, family, or friends. Photographer: V.M.
Title: Bark and Man on a Bench Caption: This tree bark brings to mind the breakdown of the skin during long-term hospitalization. With the man on the bench, I think of having all that time on my hands — time to think, time to reflect, time to enjoy the view. Photographer: V.M.
Title: Struggle for Life Caption: This picture brings to mind the struggle for life with lupus. The green bush at the base of the tree as well as the green limb symbolize life. They are right next to brittle leaves that symbolize loss of life. Photographer: V.M.
Title: The Road You Travel with Your Illness Caption: There’s a grate beneath the police barriers. When I walk on them I could just slip through the grate. It feels dangerous. The barrier legs can trip you. At first sight, it looks like a safe passage — just like when you get up in the morning and try to have a beautiful day but then different lupus symptoms crop up throughout the day that you didn’t experience when you first woke up. Photographer: Steve Edelstein
Title: Let’s Face It Caption: I feel like half the person I used to be among many others around me who are fine. Photographer: Steve Edelstein
Title: Don’t Leaf Me Alone Caption: This “hand” is out to help me yet it has lupus, as well. We can all help each other despite our challenges. Photographer: Steve Edelstein
Title: The Internal and External Scars of Lupus Caption: Oh yea, it doesn’t look good now but with medication, my doctor says it will go away. But the emotional and physical scars don’t go away. Photographer: Steve Edelstein