Living With Lupus
How learning about her diagnosis changed a young woman’s relationship with her body
By Sara Bourgeau
When Robyn Caylor arrived for a modeling job on campus, she wasn’t expecting to be standing naked in front of strangers as they drew her. But the job paid well, so she hesitated only for a moment before accepting.
Robyn held one pose for hours. When her first session was over, she was taken aback by the artists’ drawings of her body. She noticed something was off.
People in the class were changing how her body looked, drawing her thinner than she actually was. Robyn felt they were drawing her how they thought she should look. “And that really messed with me,” she said.
With quiet conversations of students talking in the background and the occasional screech of steam from the market cafe around the corner, Robyn sat down to share her story. Her dark, straight hair was parted down the middle, framing her makeup-free face. She sat leaning forward, long sleeves rolled up, prepared to relive her past.
Robyn’s struggle with body image began in her teens. At 13 years old, she went through a period of weight gain. It was around the same time when she began to experience crippling chronic pain that kept her in bed and out of school.
For a long time, her pain was ignored. Each visit to the doctor concluded the same way. They told Robyn if she lost weight, the pain would disappear.
When she was 19, her concerns were finally heard by a doctor at Western’s Student Health Center, who decided to take some tests to find the cause of her pain.
A week later, Robyn went back to the health center to look over the test results. She was diagnosed with lupus.
Lupus a chronic autoimmune disease that affects any part of the body but specifically targets the kidneys. Based on the large amounts of scar tissue on Robyn’s kidneys, the disease had contributed to her chronic pain for so many years.
Robyn spend the first three months of her diagnosis in denial.
“I would look in the mirror and see two different bodies. I would see the body I was familiar with and then what I call my lupus body,” Robyn said.
Symptoms of lupus come in many shapes and forms according to Lupus Foundation of America. For Robyn, it appears via kidney failure, muscle and joint pain and rashes on her face. Robyn also has a specific form of the autoimmune disease that doesn’t always show up in blood tests, but knows she has lupus from her symptoms.
“For those first three months, I was in a really dark place with the relationship with my body. I was angry all the time and I was treating it like complete crap,” Robyn said. “I was not eating well and basically just doing everything you don’t want to do to your body when you’re a normal, healthy person and just making it worse since I did have a chronic illness on top of it.”
During winter quarter, Robyn reached rock bottom.
Laying in her dorm, the pain disabling her from moving, Robyn listened to a record she had bought the day before her diagnosis. When “The Suburbs” by Arcade Fire came on, Robyn truly heard the meaning of the lyrics.
“The lyrics in that album are so personal that they felt like they were made for me,” Robyn said.
Robyn explained how a lot of the band’s lyrics incorporate messages of being yourself in a world where everyone is the same. The band’s songs helped Robyn’s transition from the darkest period on her life into becoming more herself than ever.
“I realized that the body I have tries its best to work, and there was nothing I could have done to prevent having this illness,” Robyn said. “Sometimes you have to sit back and thank it.”
It is with that mentality where Robyn began to see her body in a different way. She realized her body was different from the women in media. Her body would never be like theirs. There was no point in trying to become like them.
Her two tattoos remind her of that sentiment. The fine black ink reads in all caps two of her favorite songs by Arcade Fire: “Human after all” and “Mountains beyond mountains.”
With a newfound mindset, Robyn began sharing her story and messages of body positivity with those around her. She was encouraged to join the Body Empowerment group, a part of the Peer Health Educators program.
One of the group’s message is to redefine what it means to be healthy and to listen to your body and do what works best for you. Oftentimes, that will be different from other people.
Whether it’s running and going to the gym every day or occasionally going rock climbing, Robyn’s message echoes being comfortable and happy with who you are first. Doing this will help you redefine what it means to be healthy for you.
“I struggled with it for so long and it sucked. I want to be there for people that need help realizing that they’re not alone in this and that there isn’t any one body that you need to conform to,” Robyn said. “You need to do what makes you happy.”
Robyn spends her days browsing her favorite record shop, collecting multiple pairs of Doc Martens shoes, developing her sense of style and her sense of self. Each day she becomes more grateful for her diagnosis. It give her an answer to her chronic pain and changed her relationship with her body for the best.