The following article has been contributed by Jessica Rowshandel, LMSW, Director of Social Services, S.L.E. Lupus Foundation.
Lupus through the Lens Takes a Snapshot of the Experience
People with lupus and many other chronic illnesses have a shared experience of being misunderstood. “You don’t look sick,” is something almost every person with lupus has heard. That’s likely because of the lingering perception that illness has a certain look. We understand pain from a broken bone, and we can see the cast and the crutches. But what does widespread and generalized pain look like? What does fatigue look like? There is no facial expression for kidney damage. Maybe no one is around to see how hard it is to do Simple Tasks like button jeans or wash the dishes when you have a rheumatic disease. Since illness is most easily understood by what can be seen, we decided to give lupus a “look.” The S.L.E. Lupus Foundation and some of its support group members worked together to create a photography series called Lupus through the Lens – to capture, in pictures, what it means to live a life with lupus.
What is lupus?
Systemic lupus erythematosus, also known as lupus or SLE for short, is a chronic and often disabling autoimmune disease. Autoimmune means that the immune system turns on itself to attack rather than defend the body from outside invaders. Lupus can affect the heart, lungs, kidneys, brain and skin. Lupus is often overlooked or mistaken for other conditions, so it is important to be aware of the disease and to know the signs and symptoms.
A few of the most common symptoms are swollen, stiff and painful joints; unexplained fevers; and red rashes particularly across the cheeks and nose. Many people also describe feeling extremely tired, as if they had run a marathon or have the flu.
A picture is worth a thousand words.
Lupus through the Lens aims to generate awareness of what it feels like to have lupus, both physically and emotionally. In our very visual culture, pictures allow people without lupus to “experience” what it means to live with lupus.
“The simplest tasks can become impossible because of rheumatic diseases” is the American College of Rheumatology’s Simple Tasks campaign slogan. The challenge of completing simple tasks was one of the themes we discussed during this photography workshop series. What are some simple tasks that are now challenging because of lupus?
In this photo, Steve shows us the physical difficulty and frustration of not being able to open a jar of spaghetti sauce for dinner.
S.C.’s story of the loss of fingers and part of a limb is conveyed in her photos and show ways she copes with lupus despite her limitations:
And maybe simple tasks include things tat hused to make us happy and emotionally healthy, like music. Here, Barbara shows us how challenging it now is to play guitar because of lupus:
As you can see from this sampling of the Lupus through the Lens collection, the tasks might be simple, but the impact is complex. Though invisible, lupus really does change everything. The S.L.E. Lupus Foundation helps patients and their families cope with that change with many free services and educational programs. We can already see how the new Lupus through the Lens program is improving our participants’ lives…
From the emotional effects,
“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.” –Barbara
“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
To a deeper understanding of one’s own experience with lupus,
“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
“This project … 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
You don’t have to be in The S.L.E. Lupus Foundation’s support groups to be part of this project. Click here to learn how to add your experience to Lupus through the Lens.