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Annie Segarra talks struggles, overcoming

For Latinx Heritage Month at Colorado State University, El Centro welcomed a YouTuber who told her story of embracing her intersecting identities. 

Annie Segarra, also referred to as Annie Elainey, spoke at CSU on Oct. 3. As both a YouTuber and activist, she speaks out for marginalized communities by discussing topics surrounding mental health, LGBTQ+ and disability advocacy, body image and more on her channel. 

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Growing up Latinx, she felt isolated from her school for not speaking English well and displaying autistic traits. Along with this, she struggled with body image and insecurity. 

“For me, when I looked in the mirror, I saw a large, caramel-colored rhinoceros,” Segarra said. “The levels of paranoia and anxiety that came from it manifested in walking down the hallways at school and feeling like every single person I passed would feel nauseous at the sight of me.”

Segarra felt she had to overcompensate and conform in order to not be bullied. She would place hyperfocus on social skills. However, it was braver to not conform, she said. 

On the night of her fifth-grade graduation, her dad told her that one day he will make enough money to get her a nose job. 

“When he said that, everything shattered inside my brain,” Segarra said. “I was like ‘Oh, oh, oh, oh, oh. I’m not bullied because I don’t speak English; I’m not bullied because I’m weird; I’m bullied because I’m ugly. Whoa. Revelation.’”

This mindset eventually transformed into body dysmorphia, a mental illness where an individual hallucinates what they look like through exaggerating insecurities and are unable to see the reality, Segarra said. 

I have such a sense of gratitude for everything that I have learned from my condition and from the experiences that have occurred from them.”  -Annie Segarra (Annie Elainey), YouTuber, activist

Because of the excessive bullying she was experiencing, she began to internalize homophobia and deny her sexuality. The last thing you want is to give another reason to be bullied, she said. 

When she was 14, she knew she was queer but didn’t come out to her mom until 19.  

At 23, Segarra experienced pain in her legs, and it continued to progress until it was unbearable. 

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“The floor was lava,” Segarra said. “Just to touch the ground would cause extreme amounts of pain: no pressure, just if you can imagine touching your toe to water but the water was boiling, that’s how touching the floor felt.” 

After multiple misdiagnoses, she took matters into her own hands. She came to the conclusion that she had a genetic disorder called Ehlers-Danlos syndrome. People diagnosed with EDS don’t produce collagen correctly. This protein helps form the connections that hold the body’s bones, skin and organs together. 

“Let’s say your body is a house, and everyone else in the world has cement holding their house together,” Segarra said. “The person with EDS has strawberry jam holding it together. It’s sticky enough to be presentable, but it also falls apart all the time. So that doesn’t just affect your joints, it affects everything else.” 

She fought for years for an actual diagnosis, but her doctors did not believe the self-diagnosis until one doctor advocated on Segarra’s behalf.

“A diagnosis is actually a privilege in so many ways,” Segarra said. “Not just because you’re reliant on doctors not having biases toward you, but (because of) how much money it cost me to see a doctor. By the time I finally got diagnosed, I was empty pocketed. I had no money left.” 

Since her diagnosis, she has realized there is a lack of visibility and accessibility for the disabled community and has since created a T-shirt stating “The Future is Accessible.” 

“As much as EDS hurts like hell and I have really bad days sometimes, I have such a sense of gratitude for everything that I have learned from my condition and from the experiences that have occurred from them,” Segarra said.

Segarra shared her story along with past YouTube videos touching on the Pulse massacre and the Sagamihara stabbings

“It was very educational,” said third-year Karen Sandoval. “I think it’s very important that we talk about all these different intersecting identities that people have, so I thought it was very cool that she was able to bring up those different pieces and make people think about that.”

Segarra’s talk served as a message and provided a way for people to learn about her disability and how you should treat people with disabilities, said ethnic studies major V Bellinger. 

“It’s something that a lot of people need to hear,” Bellinger said. 

Laura Studley can be reached at news@collegian.com or on Twitter @laurastudley_.

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