A person born with both male and female sex organs was completely unaware she was intersex until she was 27 and came across the word in Vogue magazine.
Alicia Roth Weigel, 30, was born with complete androgen insensitivity syndrome (CAIS), a condition that means a child has XY chromosomes and internal testes, but presents female.
It meant she had both a vagina and testes, but no uterus or ovaries, and spent most of her life hiding this from others - even going so far as to carry tampons when she was a teen to pretend she had her period, despite not actually menstruating.
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Alicia, who lives in Texas, said she hadn't even heard the term 'intersex' until 2017 when she read an article about model Hanne Gaby Odiele - who is also intersex.
She said: "Her story sounded so similar to mine. I had never even heard this word 'intersex'. That is when I found out I was intersex."
Alicia now advocates for greater awareness for the intersex community and also campaigns against doctors carrying out surgery and medical procedures on intersex children and babies without their informed consent.
Alicia had her internal testes removed when she was less than a year old.
"Essentially they castrated me," she said. "When you take away someone's testes without their consent, it is castration."
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She added: "I basically grew up in hormone withdrawal. The most similar thing I can describe it to is the menopause.
"Women going through the menopause get mental fog and osteoporosis and hot flashes - which is what I experienced.
"I grew up with depression, I had to get my bone density checked all the time.
"All of that was not medically necessary.
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"It was a decision that could have been delayed and probably avoided.
"My body is now reliant on external hormones to be okay.
"What we are fighting for as a community is that these unnecessary surgeries should not be done when we are infants.
"Wait until we are of an age where we can have a say in the decisions of our own bodies."
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Experts say around 1.7 percent of the US population is born with intersex traits.
Alicia says when she was younger doctors encouraged her not to tell people about her condition.
"Doctors said that people would make fun of me, so I should lie and make up stories to fit into the normal paradigm," she said.
"When I was in middle school and my girlfriends started getting their period, I carried tampons even though I would never need a tampon because I don't have a uterus or ovaries, so I don't menstruate.
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"When I had boyfriends, I told them I had fertility issues so I couldn't have children, but I didn't tell them the truth.
"What kind of man would want to date a woman who was born with internal testes? You end up creating a whole false narrative to fit into what society deems normal.
"My brother didn't know, my grandmothers didn't know, my friends didn't know."
Alicia now campaigns against legislation targeting trans and intersex care, including a proposed bill that would class gender-affirming care in Texas as child abuse.
She added: "The broader issue is that this is anti-trans legislation but it also contains this loophole that you can perform surgeries on intersex children.
"So really they are saying that we shouldn't give this care to the kids that are wanting it but we should force it on the kids that do not want it.
"My surgery was done when I was less than a year old - I couldn't consent, I couldn't even talk."
Featured Image Credit: SWNSTopics: Interesting, US News