Using the Creative Arts to Cope With Lupus

It's well accepted that the arts provide excellent tools to help people cope with life's challenges, including a chronic illness like lupus. You don't have to be trained or particularly skilled in a creative art form to be able to experience the benefits that the arts provide. Expressing yourself through the creative arts gives you the opportunity to tell your story and to express the complex feelings related to living with lupus—feelings like anger, sadness, grief, and frustration. Or you might use the arts to show what the day-to-day realities of having lupus are like—what fatigue looks like or feels like, for example.

Whether you share your work or keep it private is up to you. The act of making art, alone, can be enough.

The lupus community is full of people who have used the arts as ways to cope with the disease and/or raise awareness about what living with lupus is really like.

Photography

Photographer taking picture
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A program called Lupus through the Lens, allows participants to take powerful photos and pair them with captions to help explain what lupus looks like—not just its symptoms, but the daily reality of living with lupus. These photos not only help raise awareness, but the process of taking them and sharing them gave participants a voice and empowered them to tell their stories.

There's more than one way to use photography to cope or raise lupus awareness, however. For example, photographer Michelle Diane Poindexter uses photography to share her lupus story. On her website, she explained the purpose behind her photos, "Some images reflect on the small things in life people over look that are difficult for those with SLE and others are dramatic narratives of an inner emotion brought to life."

Poetry

Diary book written with fountain pen with a rose
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Poetry can also be used in support groups. Words, lines, and images in poems can spark a feeling or memory, one that we can relate to, including the lived experience of having lupus. Poems like The Gift by Czeslaw Milosz and The Journey by Mary Oliver may be especially meaningful.

When reading poems, look for your favorite lines. What do they say to you? Do they remind you of your life with lupus? If so, in what ways? For example, the line in The Gift,

"In my body I felt no pain/
When straightening up, I saw the blue sea and sails."

might stand out to someone with chronic body pain associated with lupus. This poem is about a perfect day. What would a perfect day be for someone with lupus? Maybe it would be a day where your body feels no pain. What role does pain have in your life? Does it take away from your perfect day? Poems like The Gift can help you use your imagination and explore your experiences with lupus and with life, in general.

In addition to reading poems, writing poetry can be stress relieving. Some people keep private paper journals or online blogs with poems they write about lupus. This is a way to express and manage your feelings about living with the disease.

To find examples of poems about lupus, do an online search of poems about lupus, or check out the poetry section of the popular website But You Don't Look Sick.

Not only can it help to write poetry, but reading poetry about lupus written by people with lupus can help readers feel less alone and more understood. It also raises awareness about lupus and what it's really like to live with the disease.

And in addition, poetry is not only a written art form, but there's also a form of poetry called spoken word, like this performance by poet Shanelle Gabriel about some of her early experiences with lupus.

Visual Art

Vibrant gouache color set in double use
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Of course, visual art like drawing and painting can help people cope with lupus, too. You may even feel inspired to draw a picture to accompany a poem that has meaning to you. This is particularly helpful for people who preferred to express themselves through drawing or visual images rather than words.

Painting, drawing, and participating in the arts can serve as a positive distraction from the physical and emotional pain of illness. For example, in "How painting helped me survive cancer," artist Andrea Feldman wrote about her Artful Warrior series, "When I could stay awake, I was miserable, but painting helped distract me from my physical and emotional discomfort. ​I was able to paint when I could do little else. It became a sacred ritual to step into the calming, productive safety of painting colors and shapes."

In addition, visual art can serve as a powerful advocacy tool. Regina Holliday created an advocacy movement called The Walking Gallery. Patients, advocates, and medical providers paint patient stories on the back of business suit jackets. On her website, she wrote about the movement and its participants "They are attending medical conferences where often there isn’t a patient speaker on the schedule or in the audience. They are providing a patient voice, and by doing so, are changing the conversation."

Film

Family watching 3d movie at the movie theater
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Watching movies can be a magical experience and a fun way to briefly escape reality. Movies can also be powerful documentary films that help raise awareness about a particular story, social issue, disease or disability, and so on. Movies are such an important part of many cultures that there is even a Spoonie Film Club where people with chronic illness get together, online, to watch and discuss movies.

There are Oscar-nominated films about disease and disability, and some of them do a good job with their depictions. And then there are the real stories, from the source, directed and created and starring people with chronic illness.

For example, the documentary, Priority Seating, directed by Andrea Sorkin is about what life is like for women with autoimmune disease. In the film she explained her motivation for making the documentary, "I'm hoping I can come out in the end of this so that people like me will have more choices. So that people like me won't be their own primary care physicians. So that people like me won't go into debt for the rest of their lives because they were too sick to work. And so that people like me can have a dream and not be held back by an invisible disability."

Music

Black male playing guitar
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Just like other art forms, both listening and creating music have health benefits. And what's great is that writing songs combines both music and poetry—almost like a double dose of self expression and stress relief.

Musician Chris Joyner is spreading lupus awareness through rock n' roll. His sister, Dawn, has lupus and he wrote a song for her called "Hold and Keep." This shows how you don't have to have lupus to be able to benefit from and impact others with your art.

Jazz vocalist Stephanie Moore, who has lupus, shared about the importance of music in her life, "The music for me is my therapy, it's my medicine, it is part of my wellness team along with my doctors. Regardless if you have lupus or any other disease, you still have a song within you that needs to be heard, everybody has a song."

So whether or not you are singing your own song or along with another song, don't forget the importance of singing. Singing is associated with numerous health and emotional benefits. But it's also fun!

If you wrote a song and would like to share your work with others in the lupus community, YouTube and other social media sites are excellent outlets for this. The website Lupus Awareness Virtual Art Gallery, which houses a variety of art forms, has a Create a Song program where you can submit your work.

Comedy

Young woman looking herself wearing funny disguise
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Who doesn't want to laugh more? It's probably pretty obvious that laughter is good for you. But there are actual, documented health benefits to laughter. Plus, it's a wonderful coping tool.

People do all sorts of things to add more laughter into their lives—tell jokes, watch funny movies, go to comedy shows. Contrary to what people outside of the lupus community might think, a lot of laughter goes on in lupus support groups because people tell stories about the absurd side of lupus that others relate to.

But what if we could get even more specific and what if there were a singer and comedian who wrote funny songs specifically about her experiences with lupus and chronic illness? There is! Carla Ulbrich, also known as ​The Singing Patient, is an author, singer, and comedian who writes songs with titles like "Prednisone" and "Sittin' In the Waiting Room." Her songs convey the real lupus experience but make you laugh in the process.

Maybe you don't feel like laughing about lupus today and just need a good general, but funny distraction. YouTube has an endless supply of standup comedy. Enjoy.

Creativity Has No Limits!

The arts are not limited to photography, music, film, and poetry. Arts like jewelry making, knitting, even spending time with coloring books made for adults are all wonderfully creative and stress relieving practices. By definition, creativity has no limits. Try something you've never tried before and see what happens! It's not about how good you are at something but channeling all of your thoughts and emotions into something, a process of expressing yourself that leads you to producing something powerful and authentic to your personal experience with lupus.

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