Doctors Blamed Woman's Health Problems on Her Weight — But Then She Was Diagnosed with Lupus (Exclusive)

"I was always told that losing weight would fix all my problems," Alexandra Marcela tells PEOPLE

When Alexandra Marcela was diagnosed with lupus at age 20, she'd never heard of the autoimmune disease before.

Her health complications had started two years earlier during her first pregnancy, she tells PEOPLE, adding that her symptoms included blood clots in her legs, rashes on her face and hives all over her body.

"My legs were so swollen I couldn't walk," says Marcela, now 26. "Doctors were telling me it was preeclampsia, but this was also my first pregnancy and I was having so many complications. So it was very frustrating, and nobody knew the answer to what was going on."

She continues, "I remember I went to my doctor for one of my checkups and my OBGYN looked at my face and said I had a butterfly rash, so she sent me to a rheumatologist. I was a heavier set girl, so when I started following up with all my appointments, I was always told that losing weight would fix all my problems."

Marcela, who lives in Orlando, recalls being told "my legs wouldn't hurt if I wasn't so heavy set." She also says her doctors added she was "probably depressed," because she must be "unhappy" with herself and "insecure."

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Two years after having her first child, Marcela became pregnant again. She was 280 lbs. at the time, and hadn't lost any weight from her previous pregnancy. The second time around, she says, her symptoms were so much worse.

"I was like, this can't be normal, there's something wrong," she says. "I got sent back to rheumatology. I had to do tons of blood work. They did an A panel, and sure enough, they came back that I had lupus," she continues. "I was 20 years old, and I'm like, what the heck is lupus? I've never heard of lupus a day in my life."

Lupus occurs when the body's immune system attacks its own tissues and organs, and the inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart and lungs, according to the Mayo Clinic.

Following her diagnosis, doctors put Marcela on steroids, which caused her to gain more weight. She recalls at one point being five lbs. away from weighing 300 lbs.

"A lot of the side effects with these steroids are I just want to eat and eat and eat," she says. "I just started gaining weight. But now, here I am again, and my doctors are like, 'your lupus is so bad because you're overweight.' "

Marcela's doctors recommended she get weight loss surgery. "They said the surgery would make my lupus symptoms go away," she continues. "I thought this was the key to living a lupus free life, so I'm like, 'Okay, full send. Let's do it.' "

After undergoing the surgery, Marcela lost 145 lbs. in one year. But her weight loss did not lead to the improvements promised by her doctors.  "Now here I am today, half of the size of the person I was before, and my lupus has never been worse," she says. "It's a daily struggle."

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The mom of three explains she has a butterfly rash on her face that, no matter what she does, will not go away. The Orlando resident also said that just short walks cause her legs to swell.

Still, she strives to be there for her kids, even when her symptoms — which also include fatigue and hair loss in addition to the rash and swelling — are bad. "I have to show up for them, so I have to fight," she says.

In learning to deal with her lupus, Marcela began sharing her story on TikTok. To her surprise, the first video she made discussing her lupus symptoms got over 3.5 million views.

"I literally remember it like it was yesterday, I was sitting on the couch, and I remember that I was feeling a little bit weird," she says. "I'm going on Google and social media and I couldn't find much on TikTok about lupus."

"Somebody had to advocate," she continues. "You don't ever hear much about autoimmune diseases. And there's still no cure. The worst part about it being an invisible illness is that we may feel we're literally crumbling on the inside, but nobody is ever going to see that."

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"I'm really big on your diagnosis just does not define you," she adds. "To this day, I go read comments on my videos, and there is such a large community of people dealing with autoimmune diseases and lupus who were also misdiagnosed for years."

Marcela believes if TikTok had been around when she was younger, she may have found an answer to her health issues sooner. "I just think that at the time when I was 17 dealing with these symptoms, if TikTok was a thing then, and I found someone who is spreading awareness, it could have helped me so much," she says.

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