Harnessing the Power of YouTube

Although she has helped raise awareness about Ehlers-Danlos syndrome (EDS) across the globe, it took nearly two decades for disability activist and YouTube star Annie Segarra to be officially diagnosed with the condition.

Annie, now 30, first began sensing feelings of loose joints, frequent joint dislocations or partial dislocations (known as subluxations), and chronic pain at age 9. EDS, a group of disorders characterized by weakened connective tissue in the body, is estimated to occur in 1 in every 5,000 people. It primarily affects joints, skin, internal organs, and blood vessels, but symptoms can vary widely.

At age 13, Annie started to experience significant back pain. On multiple occasions, her mother would find Annie on the bedroom floor for hours attempting to realign her back by slamming it onto the ground. (Misalignments can happen constantly and for frustratingly minor reasons, like walking on uneven ground or bumping into a table.)

Over time, the symptoms increased in consistency and pain levels heightened. Annie’s body constantly ached, whether from recent joint injuries, instability, or her fatigued muscles working overtime to try to prevent dislocation.

“My knees and joints will end up crooked on each other,” she explained. “Everything is just very slippery.”

The future is accessible

While Annie’s life has, in some ways, been defined by EDS, she has become a leading voice for the entire chronic illness community—and beyond.

Annie is a social media personality who creates videos and other content around being disabled, as well as being queer and Latinx. (Online, she goes by the name “Annie Elainey.”) Through her various platforms, Annie tackles sensitive topics, like how to communicate with loved ones about disability or the fact that some wheelchair users are ambulatory.

Annie and her activism have been featured in dozens of news articles and media stories. She has also started large-scale awareness campaigns that challenge ableist ideas, such as #TheFutureIsAccessible, #AmbulatoryWheelchairUsersExist, #InvisiblyDisabledLooksLike, and #HotPersonInAWheelchair.

Even before her EDS diagnosis, Annie had already been an advocate and spokesperson for positive body image through her Tumblr account, Stop Hating Your Body.

In fact, Annie’s early career aspirations were in theatre, music, or film. Although she had to put her dreams of attending fine arts school aside due to her health, her work as an activist and educator is a clear extension of her charisma and ability to captivate an audience.

Holding medical professionals accountable

Despite the severity of her symptoms, the road to diagnosis was not an easy one.

In her early 20s, Annie began experiencing severe chronic pain in her feet, leaving her largely unable to walk. This led to her first experience discussing chronic pain with a health care professional: a podiatrist who diagnosed her with flat feet after analyzing X-rays.

He recommended splints, however, Annie knew they weren’t the right solution because the pain would spike upon putting any pressure on her feet. The next recommendation was surgery. During her time under the knife, Annie learned the hard way that doctors don’t always know best.

“When I woke up from the surgery, I felt everything,” she recalled. “I was screaming, crying, ultimately in shock. He did this traumatic restructuring of bones inside my foot, sliced the calf muscle to relieve the pressure, and the anesthesia wasn’t numbing anything; painkillers wouldn’t work either.”

Throughout the recovery process at home, Annie kept searching for possible answers regarding her condition. Thanks to the chronically ill community online, Annie found information about EDS. She then began documenting symptoms and printing out pages on the topic, creating a binder and matching the symptoms she experienced to the symptoms of EDS. She repeatedly attempted to show her findings and explain her daily symptoms to doctors, begging them to run more tests to hone in on a diagnosis.

The office confrontation that changed everything

Annie accepted that she would need a wheelchair in the long-term and began to focus on her back pain. When a neurosurgeon attempted an injection of steroids to reduce her pain, Annie tried to explain how steroids negatively impacted her, which Annie says is not uncommon among EDS patients. The doctor told her that was “not possible.” He also commented that her scan resembled that of a car accident injury.

Annie confirmed with him that she had not been in an accident recently and that the separation between her joints in that scan was additional evidence of the condition she had. Contradicting her, he said, “No, I don’t think you have that. But what I would like to do is set you up for an operation to fuse your joints together.”

The emotions that had built up over the past few years of doctors dismissing her with cold and dangerous responses, leaving her feeling vulnerable, finally boiled over. “You’re not listening!” she cried.
Another doctor walked in and asked why she was crying. The first doctor replied, in a mocking tone, “She thinks she has Ehlers-Danlos syndrome.”

The second doctor, more polite, spoke directly to Annie. “I’ve never heard of that. Could you spell it for me?” After Annie did, she searched for the condition on her phone, looked up at the scan, and said to the first doctor, “She could have this.”

The first doctor begrudgingly and defeatedly replied, “Fine. I’ll send her to a geneticist.” It would be this geneticist who finally diagnosed her with EDS. She was 26 years old — diagnosis had taken 17 years.

The power of community learning

While there is no silver-bullet-like treatment for EDS, Annie has gradually identified many strategies and tools that help her maintain function, including, braces to keep her joints in place, a cane that turns into a seat, desks that support a laptop in bed, and ergonomic pens.

She is able to stand, often with the aid of a cane, for a minute or so at a time. Using an electric wheelchair has been hugely helpful in keeping up with activities she loves—like attending social events with friends and visiting the movies, museums, or nearby Disney World.

Annie sincerely hopes more health care professionals would hold themselves and their peers accountable for their biases with patients, particularly those from marginalized communities. She uses the term “gaslighting” to describe dismissing patients just because clinicians have yet to find the answer.

“Patients come to doctors when they are at their most vulnerable; in pain, scared, and struggling, often spending immense savings just to get into their offices, only for them to be dismissed, disrespected, and made to feel hopeless,” says Annie.

Annie is thankful to online communities that led her to learn about EDS in the first place, affirmed her existence as a young person who needs mobility aids, and allowed her to cultivate a small community of friends who also have EDS. Annie has found that chronically ill communities on Facebook, Twitter, and Instagram have been a great resource for those looking to connect and receive guidance.

Eventually, she is interested in the idea of using the technologies of Discord—an online voice, video, and text communication service—to develop panels featuring individuals of various backgrounds and identities. She hopes to help facilitate a worldwide network of patients, as well as sharing stories about disabled and chronically ill communities.

Annie is determined to keep sharing her experiences and knowledge using social platforms as methods of storytelling and visibility. On a personal level, she notes how affirming it has been to see others with shared experiences and identities. She hopes that she can provide people ways to effectively communicate their experiences and, that, by being so visible herself, she can also offer a window into a world that so many people rarely even consider is there.

“There’s a whole culture and understanding of disability and chronic illness. We’ve been so erased in the mainstream and that means many have no idea how to communicate or work with us,” she says. Regarding her previous dreams of being an actress: “Rather than act out someone else’s words, I want to tell my own stories and those of other marginalized people and how they live their lives. I’m excited to do that.”
—by Vinciane Ngomsi