About Lupus

Lupus through the Lens

What is your favorite photograph? It is your favorite for a reason. Something about it stayed with you long after you first discovered it. That’s because photographs are powerful. Maybe they preserve an important memory of someone you love, or a time in your life that meant a lot to you. Sometimes photographs capture a beautiful scene that brings you joy whenever you look at it.

There is truth in that old saying, “A picture is worth a thousand words.” How many times have you tried to explain your experience with lupus to someone only to find that they still don’t quite get it? But maybe you decide to take photos of what life with lupus is really like – the ups, the downs, the details that most people don’t see. And then perhaps you show these photos to that person instead and the visual impact finally helps them see lupus for what it is.  Well, that’s exactly what we have been up to here at the S.L.E. Lupus Foundation.

Strings and My Guitar, by Barbara
Music has always been emotionally comforting and a “feel good” to my soul. This photograph depicts many strings of a guitar which represent the challenge for me to play even one note. Trying to strum to try to create a note hurts and is painful. Both the strumming hand and the hand holding the neck of the guitar hurt me. The crippling effect of lupus makes it notably difficult to play my guitar.

For the last few months, a group of people with lupus have been working with the Foundation on a photography project using photovoice techniques to capture, in pictures, what it means to live with lupus. The project is called Lupus through the Lens. To view the photos, please visit the project website here.

How Taking Pictures Can Help You

There are many benefits to taking pictures with a specific focus like lupus. A few examples:

  • We live in a very visual culture. Since pictures are a visual medium, they can help create awareness about living with lupus, experiences that most people wouldn’t know or understand:
    • Thanks to the Internet, we can share pictures very easily. They can reach thousands of people and places across the globe.
    • Pictures can be used in advocacy efforts to help policy makers and politicians understand lupus.
  • It can help people identify important issues in the lupus community. What are some important issues that you face living with lupus?
  • Taking pictures can feel good. The Happiness Project has outlined several different ways that this can happen.

One of our project participants would agree:

“I find nothing but peace from anxiety. When I know that I am getting into a depression, I walk or ride my bike until I get to the water. On my way, I get off and take pictures and my depression reverses. Taking photos feels good. I find art in objects and things that are old and odd looking that most people wouldn’t find pretty or interesting.” –Barbara

Feelin’ Good, by Steve Edelstein
Katarina is a rescue cat. It feels good to save an animal and to be loved and to love unconditionally. She makes me happy and we play. She is demanding and I cater to her. Although I can’t always play with her because with lupus, I don’t always feel well. But she doesn’t judge me and she always shows me affection and love anyway. Unfortunately, that’s not always the case with certain friendships I’ve lost because I couldn’t keep up.

  • It has even helped the people taking the pictures understand their own experience with lupus in a deeper way.

“As a hobby photographer, I already had a way of taking photos, so it was a challenge to take photos in a new way, focusing on lupus. It really made me realize how lupus has affected my life and my family’s life.” –Brianna

“Something quite wonderful happened to me because of this project. Now that I am walking around with a camera, I’m noticing everything. This week, I tried to find all the beauty around me. I’m living in a community and I didn’t even realize it. This project made me open my eyes.” –Dawn

“This project has been very enlightening. It opened my eyes up to new things. It helped me stand still and notice things. If I get up in the morning and I don’t have pain, I feel that I must keep moving forward until my body says “Enough” and I crash. This project has helped me slow down and move at a better pace.” –Judy

Create Your Own Lupus Photography Project

Do you want to also take pictures about lupus but are not sure what to photograph? The first step is to look through the photos that our participants took, here. You will notice that they are grouped according to certain themes and have captions.

During our meetings, we talked a lot about themes to help participants think about what they might want to photograph to express their experience with lupus. Some of the questions to help focus your thinking about what to capture in your pictures include: What am I proud of? What is it that my family, friends, or community do that make me proud? What can I change about myself? What would I like to see my friends, family, or community change?  As you answer each question, relate it to your lupus.
Some other themes to consider include: coping with fear, sadness, or grief regarding lupus. Other themes focused on healthy eating, finding easy ways to get exercise, and body image; what it’s like to travel when managing chronic illness; isolation versus getting support; spirituality; every day that are now hard to do with lupus; the shock of being diagnosed; living life to the fullest; and much more. As you will see, in response to these themes, some people took photos that were literal and others that were symbolic. Your creation, your choice!

It’s very important to write a caption for your photos to help others understand the photo better and what it means to you as the photographer. Some captions tell a story. Some explain how a certain image is connected to lupus. Others might share what the photographer was feeling in the moment the photo was taken.

Sharing with the lupus community on Facebook
We invite you to participate in this project with us. You don’t need a fancy camera – even a cell phone camera will do. All you need is the desire to help people understand lupus. What does it mean to you to live a life with lupus? What do you want others to understand? We encourage you to take a picture that answers these questions and post them to our Facebook page. We look forward to seeing your photos!

Tree of Life: Reaching Toward the Heavens. Rebirth! Rejuvenation!, by Judy
You can see that this tree has been physically altered, but at its core, it still reaches up for rejuvenation of the spirit because everything has a living spirit. Even though lupus tears our bodies down internally, and sometimes externally, there’s still that inner spirit that keeps us moving forward.