Woman's Selfies Reveal There Is More Than Just One Type of Lupus
When Jokiva Bellard first noticed a red rash on her skin and began experiencing the painful symptoms of lupus, she would go weeks without posting a photo on social media. She felt “ugly,” she said, but now, she’s using her Instagram account to educate others about lupus and show herself (and anyone with a chronic condition), that they are still beautiful.
Under the handle @_indianrosee, Bellard, a 23-year-old originally from New Orleans but now living in Dallas, posts honest photos of herself and the effects of her cutaneous, also known as discoid, lupus — a form of lupus that causes painful red lesions to form on the skin. She was diagnosed with discoid lupus and systemic lupus erythematosus (the most common form of lupus) when she was 18.
Bellard told The Mighty that people often don’t realize she has lupus — people have told her she must have eczema or use drugs.
“I used to call my mom and say ‘I’m in Walmart, these people are looking at me.’ At this time my rash was all over my face, completely red, swollen,” Bellard said. “I would start crying because they would walk on the other side of the aisle just to not come my way. The more society judged me off my appearance, my self-esteem sunk.”
During a hospital stay last year, Bellard took a video of herself talking about her condition and encouraging others struggling with lupus to take care of themselves and posted it on her Facebook page. By the next morning, it had 114,000 views, with Bellard receiving dozens of supportive messages.
Lupus is a serious autoimmune disease that attacks every organ in your body and it is not to be taken as a game it is a serious condition that has not been fully determined of be able to control everyone lupus is different.
Posted by Jokiva Rivers on Sunday, March 27, 2016
That huge response motivated her to start posting regularly on Facebook and Instagram and advocating for lupus. She said she never anticipated the reaction she got, but was inspired by all the people who commented and helped her feel beautiful again.
“Love yourself, because if you love yourself in that situation, you’ve made people around you love you even more,” she said. “And people will want to educate themselves — ‘What’s going on with you, baby?’ You educate them.”
Sometimes I cannot cry because there are no tears left , There is no voice no fears kept , Sometimes I look in the mirror and try to understand the image , I say love yourself until you get the vision , I'm running and running but when will I make it , I kept giving and giving and until I could no longer make it. I am confused as broken , I feel like I'm fish in the wave but there is no ocean , No no no no this is not me is it ? And if it is would I be able to fix it ? Playing this movie but I couldn't even afford to buy the ticket , I feel like there's a fence but it's not white or picket , I wanna smile over the moon and glow over the stars , I wanna be that feeling that you get when you seen it all , And be content and feel more loved. I fear that my insecurities will take over and become the best of me , Hopefully I could overcome that and throw it out so you could have the best of me. Rescue me rescue me from this dream , Rescue me so the seen could be unseen , Hiding in a shell until I find what I mean.
Bellard now has over 93,000 followers on Instagram, who she calls her “family.” Through her photos and advocacy work (she led a “lupus walk” in Virginia earlier this year), she tries to support other warriors and educate people without chronic illnesses. For example, there was the follower who reached out to her for advice after losing her hair to alopecia (“I said embrace your natural beauty,” Bellard said) — and the singer Kehlani, who has a family member with lupus but didn’t know much about it beyond the butterfly rash until Bellard spoke with her.
In fact, Bellard said she’s happy to help others understand more about her condition, which she’s treated with two rounds of chemotherapy and takes 21 pills a day to manage.
“A 6-year-old girl walked up to me and said, ‘You’re dirty.’ And her mom was like, ‘Don’t say that, I’m so sorry.’ I said she doesn’t know,” Bellard said. “I don’t get easily offended by people who don’t know as long as they’re willing to be educated about what is actually going on with me.”
What she really wants is to inspire others living with chronic conditions that have affected their appearance and help them realize how beautiful they truly are. She’s currently getting ready to go back to school and plans to publish a book of poems and drawings about her life. Bellard also hopes to continue her advocacy work.
“Every time I run into a woman, I tell her she’s beautiful. I’m like, ‘You know girl, you’re looking nice. For you to have open heart surgery with lupus, girl you’re looking real good.’ ‘Girl, you had a leg amputation, you’re looking good, girl.’ They’re still beautiful even with those problems,” Bellard said. “That’s what I’m trying to get people to understand.”