At seventeen, Jokiva had plans. She is not the type of person who can sit still. If she’s at home all day, she’ll cook breakfast, lunch, and dinner for her guest. At seventeen, she wanted to join the military. She wanted to go to school.
At seventeen, Jokiva was diagnosed with lupus.
Lupus is an inflammatory autoimmune disease where the body’s immune system is basically in self-destruct mode: it inflames organs and skin to debilitating levels. Jokiva’s mom had the same condition, and the long hospital visits were almost normal to her at first. She accepted the change as a challenge and took her medications pretty routinely.
When she was nineteen, Jokiva spiked a fever and was repeatedly misdiagnosed for UTIs. Her fever repeatedly sent her to the emergency room. Her face was so swollen that she couldn’t even open her eyes. She was admitted into the hospital, and it took the doctors two months to find out that her kidneys were failing due to lupus.
Shortly after starting a new medication in hospital, Jokiva went into remission and back to work and school. Her hours were odd, and her sleep schedule was wrecked, and eventually her kidneys failed again. Along with her second kidney failure, she had blood clots in her lungs and ulcers in her mouth and stomach. Her skin broke out in rashes, which were easily infected and often bleeding.
Over the course of two years, she increased medication to 21 pills a day and chemotherapy, and she still went to work and school every day. Between all the places she needed to be, she was in a head on, hit and run collision. Her chronic pain plus her injuries became so unbearable, she couldn’t walk to class -- her teachers encouraged to take a break from school.
Now, she’s back in school to be a nurse. “I like helping people. I mean, seeing what I went through -- seeing life and death situations… you can successfully change someone else’s life the same way someone changed yours.”
As an advocate for people with lupus, Jokiva has met a lot of women who relate to her struggle -- one woman lost a leg, and another discovered her lupus after an open heart surgery. She wants to open a lupus-awareness clothing line to help people bridge the gap of understanding lupus and its struggles.
“Somebody’s gotta be the voice for somebody,” she says. And as she’s become a more established social media presence, she’s seen an increase in ‘rude’ messages. “It’s whatever -- it’s just one person. Just because there’s one bad being in the bunch doesn’t mean you have to cut back from everyone else… I feel that as women, we put each other down more than we put each other up. Help someone instead of talking about them.”
“There are times my confidence is low. I look like a red cherry with a rash -- [people think] I’m contagious. My immune system is newborn baby-weak.” Jokiva knows that people are afraid of the rashes on her skin. But with her weakened immune system, they’re more a danger to her than she could ever be to them. “I love kids, they’re honest and they ask questions. I would love for people to ask instead of looking at you like you don’t belong. People think that lupus is not a very serious condition. You start to learn about your body, and you can’t do as much. Your body’s not ready. We can’t control how it’s going to be.”
“I’m not changing who I am. I’m not changing myself for anyone and losing myself… Be powerful, and stay motivated and informed. You just can’t give up, you gotta keep having faith,” she says. You never know what your impact is on another’s life, whether it’s a passing smile or a helping hand. Jokiva’s strength and faith are resonant and resilient, “It’s up to you how you handle obstacles.”