Doctors said I was just ‘heavy’ and ‘insecure’ but I had a serious disease: Warning signs

Doctors told a woman she was “heavy set” and that all her health problems would go away if she lost weight — but she was really suffering from a potentially fatal autoimmune disease. 

Alexandra Marcela, 26, a mom-of-three from Orlando, Florida, was diagnosed with lupus six years ago, People reported. 

Lupus is an autoimmune disease that occurs when one’s immune system attacks tissues and organs, according to the Mayo Clinic. 

“Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs,” the medical center wrote.

Marcela first started experiencing symptoms like blood clots, face rashes, and body hives during her first pregnancy, but it was during her second pregnancy two years later that she realized something was very wrong. 

“My legs were so swollen, I couldn’t walk,” Marcela told People of her initial symptoms. 

“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 added. 

Preeclampsia is high blood pressure that can occur during pregnancy, according to the Mayo Clinic. 

At one point, Marcela said her OBGYN noticed a “butterfly rash” on her face — a classic lupus symptom — and sent her to a rheumatologist. 

However, she wasn’t diagnosed initially.

“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 said. 

Marcela said doctors told her that her legs wouldn’t hurt so much if she “wasn’t so heavy set.” Docs reportedly also told her that she was depressed because she was “insecure.”

Depression, anxiety, fatigue, hair loss, brain fog, dry eyes and rashes are all symptoms of lupus, which can take years for doctors to properly diagnose.

Alexandra Marcela talks about her lupus journey on TikTok. TikTok/alexandramarcelaaa

By the time her second pregnancy rolled around two years later, her symptoms intensified. She went back to a rheumatologist, who finally gave her a diagnosis. 

“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.” 

At that point, Marcela, who didn’t lose weight from her previous pregnancy, got up to 280 pounds. After being prescribed steroids to manage her symptoms, she nearly weighed 300 pounds. 

“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 “butterfly rash” on her face is a classic lupus symptom. Alexandra Marcela

She later got weight loss therapy because her doctors told her it would make her symptoms go away, but a year after her surgery she weighs 145 pounds less — and her symptoms are worse than before. 

“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.”

She said her legs still swell after short walks and she has a butterfly rash that just won’t go away. She says she knows she has to fight so she can show up for her three children.

Doctors told Marcela if she wanted to feel better she’d need to lose weight. TikTok/alexandramarcelaaa

Marcela now posts to her TikTok account about her lupus struggle and said she was stunned when one of her videos got more than 3.7 million views.

“This is an invisible illness 💜,” reads her caption to that video. 

Followers flocked to her comments section to support her and share stories of their own. 

“I was diagnosed 6 yrs ago. Have done chemo, kidney failure, dialysis, and transplant. Lupus is no joke 🥺,” someone said. 

“5 years with Lupus. An illness nobody will ever understand 😢,” another wrote.

“Took me over 5 years to get a correct diagnosis! To all of you struggling, don’t give up! 💜,” said a third. 

Marcela is spreading awareness about lupus, which she says is an “invisible illness.”Alexandra Marcela

The Post reached out to Marcela for comment. 

She decided to post about her journey online after realizing there weren’t many resources for people struggling with lupus on TikTok. 

“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,” Marcela told People. “I’m going on Google and social media, and I couldn’t find much on TikTok about lupus.

“Somebody had to advocate,” she continued. “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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