Lupus is often seen as a silent killer, an autoimmune disease that few people know about or understand unless it affects someone close to them. But Jokiva, a 21‐year old woman out of New Orleans, is using her social media pages to change that. On both her Instagram account and Tumblr, she shares accounts of her day to day life with lupus:
The American Osteopathic College of Dermatology describes discoid lupus as, “a chronic skin condition of sores with inflammation and scarring favoring the face, ears, and scalp and at times on other body areas.” It is often exacerbated by too much exposure to the sun. Jokiva has this condition, but that does not stop her from sharing pictures on social media and informing others about her disease despite her admitted insecurities.
Jokiva states that she uses her Tumblr as a place to vent and escape, and that others can be dismissive of the disease, telling her it isn’t that serious or mistaking her lesions for eczema. But she has experienced hair loss, possible cellulitis, and has even had her lupus treated with chemo.
She also talks about how lupus has affected her social life at only 22 years old, but Jokiva luckily has her husband as a huge support system in coping with her ailment and states that she is focused on living the normal life of a young woman.
Many times, people living with lupus do not have enough energy to spend time with friends, or they become depressed or experience anxiety as a result of coping with the disease. Her Tumblr states:
People Act Like I am not suppose to have a normal life Just because i have a condition i cant control. Stereotypes have though [sic] that i was suppose to handicap myself. Stay in my bed and be sick and lonely. And i want others to know that i do have a life. I am getting back in school for Nursing. I have a family, Moral, Goals, and dreams.
I dream big but i use [sic] to be so big on thinking and caring what people think about me and thats when i say enough is enough. I am a normal girl in a normal world. i go out to eat with friends and i might be in the doctors office faithfully getting my check ups and treatments but im normal and i am allowed to make mistakes. Lupus does not define me.
Jokiva’s story is educational, given that black women develop lupus at a much higher rate than others and face more complications. Visit these sites for more information about lupus, treatment, and research for a cure: