Lupus, like other autoimmune diseases, isn’t always visible — hence its reputation for being the “invisible disease.”
Lupus is a lifelong chronic disease caused by the immune system attacking the body and is marked by inflammation in the joints, skin and organs.
Symptoms include body and joint pain, chronic fatigue, redness and swelling in the hands, fever and hair loss, among a plethora of others.
The disease often leaves patients feeling exhausted and requires them to be on medication like biologics or corticosteroids for the rest of their lives, drastically affecting their physical, emotional and mental well-being.
Since May is Lupus Awareness Month, patient advocates and influencers are taking time to educate the general public about the disease and its complex impact on their day-to-day lives.
A search for lupus on TikTok generates more than 80 million posts and leads to a community led by several people living with the disease.
As patients, they explain their symptoms, how they were diagnosed and how they manage the condition. Meanwhile, As advocates, they aim to foster a sense of community among others on social media who are also dealing with autoimmune conditions.
Here are some of the top lupus influencers on TikTok.
Alexandra Marcella
Alexandra Marcella refers to herself as a “lupus baddie spreading awareness” on her TikTok, which has more than 32,000 followers.
Marcella’s videos have gone viral multiple times due to her openness about living with the disease and discussing its impact on her everyday life.
“I have lupus, of course people tell me I look fine every single time I don’t feel well,” she says in one video that gained more than 56,000 likes.
In the same video, she explains that she often feels okay one day then terrible the next; she often has to cancel plans; and she has to try “thousands of meds” to figure out which one works best for her body.
In another video, Marcella encourages other “lupus warriors” to take breaks when they need to. Comments under the video show she resonates with others who also have lupus and who gravitate to TikTok to find community.
“I need friends who are going through the same thing,” one commenter notes. “Only we understand each other.”
Jasmine
25-year-old Jasmine, or @jasminemulaaaan on TikTok, also considers herself a lupus warrior. On her TikTok, she posts positive videos documenting her lupus journey and the struggles she endures physically and emotionally.
“It takes over your body,” she explains in one video. “It’s hard to explain your situation… to people who don’t understand or who aren’t going … Because they’re like, ‘You look completely normal.’ I’m fucking sick, I’m tired… I may look good on the outside, but I’m struggling on the inside.”
In another video, she explains that she’s on her way to receive her treatment — an infusion of GSK’s Benlysta.
Naomi Rose
With a following of more than 200,000 people on TikTok, Naomi Rose posts about living with lupus as a mother.
In 2022, her video about being diagnosed with lupus the year prior went viral and gained more than 3 million views and nearly 500,000 likes.
In other videos that have also gone viral, Rose details some of the early symptoms that led to her diagnoses: skin rashes, hair loss and patches of baldness. The hair loss in particular triggered depression, but after receiving treatment, Rose has been able to see hair grow back.
Since then, she’s developed a strong following on social media as a “lupus warrior” and even runs a lupus support group, which she notes focuses on discussing medications, solutions, doctors and vulnerable pictures.
Tierney Geller
Tierney Geller also touches on some of the emotional and mental health impacts of lupus on her TikTok account, which has more than 111,000 followers.
The lupus advocate notes in her videos that lupus led to depression and made her question her worth and value.
“When I lost my hair I couldn’t find any beauty within myself,” Geller notes in one video. “It killed my self-esteem. It showed me how cruel the medical system can be and how damaging that is… It makes me feel very lonely and sad. But I don’t give up. Because I won’t let lupus win. It is a part of me — not who I am.”
Geller also documents chasing her life dreams despite her chronic illness — such as living in a van and travelling.
“Never stop living just because it may be a bit harder,” she notes in one video.
Val
TikToker @vale_9210, who goes by Val, has dedicated her social media account to showcase “living life with autoimmune diseases.”
In one viral video, she points out the symptoms that she experienced before she was diagnosed with lupus — including swollen lymph nodes, “random” high fevers, fatigue and rashes.
Following her diagnosis, she experienced troubles when she was placed on lupus meds that did not work well for her body; she had to switch rheumatologists and get on the right treatment.
After all the battling, Val notes in retrospect that the diagnosis spurred her to make lifestyle changes — including switching to a lower stress job, eating a clean diet and exercise.
“I started listening to my body,” she notes in a caption. “I used to live in autopilot mode and unfortunately this had to happen for me to take action.”
Larii
If people with lupus want to find inspiration to live a healthy, active life even after an autoimmune diagnosis, look no further than TikToker @lariiplush, who is equal parts lupus advocate and weightlifter.
In one viral video under the #lupusawareness hashtag, Larii posts photos of her before her lupus diagnosis — then compares them to her post-lupus diagnosis photos, which signify weight gain — a common side effect of lupus medications.
Larii breaks down the stigma around lupus symptoms and medication side effects, but also focuses on producing content that showcases her ability to live an active life in spite of the disease.
It’s probably why she refers to herself first as a “gym rat,” who also happens to deal “with an autoimmune disease.”
