Justine Ezarik, known as iJustine, had a disabling health scare last year.
One of the truisms about the disability community is twofold.
According to the World Health Organization, some 1.3 billion people, or 16% of the global population, cope with some kind of disability. This means disabled people make up the largest marginalized and underrepresented group on the planet. It’s also the easiest group to join—from congenital to accident to old age to illness, anyone can become disabled at anytime. At a fundamental level, supporting disabled people and our cause goes beyond sheer righteousness. It’s also recognizance that everyone is eventually going to need some sort of accommodation and assistance, technologically or otherwise, during their lifetime.
Justine Ezarik is one of those people.
Ezarik, best known on the internet as iJustine, is a megastar tech YouTuber with over 7 million subscribers. (She also has another 1.8 and 1.6 million more on Twitter and Instagram, respectively.) A year ago, she made waves by sharing her experience battling thoracic outlet syndrome and how it became life-threatening for her. It’s a condition where the clavicle and rib press against the subclavian vein and thus restrict blood flow to the heart. In an interview with me via videoconference earlier this month, Ezarik explained repetitive movements due to her martial arts training kept compressing her heart and ultimately causing the blood clot. Her arm would become severely swollen and she became fatigued, which she initially disregarded as a symptom of her usual physical activity. “But then one morning, it got so bad that that was when I was like, ‘Okay, something’s wrong. I need to go get this checked out’ when all of the blood vessels were bursting in my arm,” she said.
The clot turned into a life-threatening pulmonary embolism, where a piece broke off and travelled to her lungs.
Ezarik credited her decision to finally see a doctor to the health tech in her life. She regularly wears an Apple Watch and an Oura Ring to monitor things such as her heart rate, body temperature, blood pressure, and more. In addition, she also uses a connected blood pressure cuff, thermometer, and scale. This collection of data, she told me, provides her a baseline for where she typically lies in various areas, which helped alert her to the fact something was seriously wrong. “I think that [information] really did help me because I’d have all that in my phone… it was mostly being able to track and chart things, and be able to bring that to the attention of the doctor [and tell them], ‘Hey, I think something is wrong’,” she said of the value of her health tech.
Ezarik spent five days in the hospital, two in the intensive care unit.
“Thrombosis is a blood clot which is formed when there is trauma to tissue, a blood vessel or when there is a surgical incision. Platelets and proteins in the blood form a clot, blocking a blood vessel or small artery,” said Dr. Jean Connors in an email interview. “It can affect nearly anyone. For example, some people have an inherited blood clotting disorder, making their blood more hypercoagulable and at a higher risk for developing a clot. When people are hospitalized, undergo a major surgery or trauma, develop pneumonia or cancer, they experience added risk factors for getting a clot. In addition, risk goes up with age.”
Dr. Connors went on to say it’s “necessary” to get treatment for blood clots from your doctors as soon as possible. “The sooner you start anticoagulation [of the blood clot], the more likely the clot is to resolve. It is important to note that anticoagulants keep a clot from growing and it is imperative to seek treatment right away to prevent the clot from getting bigger or evolving to limb threatening thrombosis,” she said.
Ezarik echoed sentiments about disability and accessibility being relevant to anyone. The phrase “accessibility is for everyone” is popular in tech circles, albeit misunderstood and overused in many respects. For Ezarik, however, her medical scare truly did reinforce the notion that literally anyone can benefit from accessibility and assistive technology. “If, at some point, in everyone’s life, we’re going to need to use that assistive technology, whether it’s you aren’t able to see as well or, for me in the hospital, I couldn’t move either one of my arms,” she said. “I was using a lot of voice-to-text, I was using a lot of the feature where you had to make your phone screen half the size, because I could only use like one finger. I couldn’t actually hold the phone. There were so many small things that I was like, ‘Wow, this is incredible that these things are here.’ You don’t really know that you’ll need [the accessibility software] until you need them. The fact they’re there is awesome.”
Ezarik’s appreciation for accessibility and assistive technology predates her bout with thrombosis. She said she has many friends who rely on such functionality daily in order to access their devices, and cited the work companies such as Apple and Microsoft, amongst others, are doing in this space. She marvels at her friends’ abilities to not only use their computers the way they do, but also their ability to effect change and influence how technology companies create their products to be an empathetic and inclusive as possible. Microsoft’s work in pushing access forward, for instance, in creating disability-oriented peripherals like mice and keyboards, plus Xbox game controllers, is one area where Ezarik is particularly impressed in terms of technological progress.
Going forward, Ezarik has channeled her relative celebrity and her medical scare into becoming an ambassador for thrombosis awareness and of World Thrombosis Day, falling annually on October 13. She described herself as being “super grateful” for the privilege of being the United States ambassador for the occasion, telling me World Thrombosis Day is a day she “now looks forward to being able to celebrate” and connect with others who have faced similar circumstances. The opportunity to help heighten awareness of blood clots is, like accessibility, something Ezarik is especially keen to put her weight behind. “Never in my wildest dreams would I ever have thought that I would ever have a blood clot,” she said. “It’s something that can really happen to anyone. I mean, I’m a pretty active person: I eat well, I’m always moving around. I think the stigma behind [blood clots] is you think that this happens only to old people or people who are inactive. It really can happen to anyone. I think just making that something that is known is my goal, and being able to use tech to further everyone’s health and try to get them to keep moving and be able to take health into your own hands and know your baseline normal—everyday things like your blood pressure, temperature, blood oxygen levels, is very important.”
From a clinical perspective, Dr. Connors said treating thrombosis has been an “ongoing topic of discussion” in terms of whether it’s actually curable or merely manageable through medication. There are ways to prevent recurring blood clots, but said they can be flareups of conditions like lupus or Crohn’s disease. “We are still figuring out managing this grey area for those that have moderate risk factors,” she said.
Ultimately, Ezarik is thankful for the role modern consumer technology has played in monitoring her body. Most importantly, however, is getting people to understand not to be lackadaisical with your health.
“If anyone ever feels like something is not right with your health, don’t wait—don’t make the mistake that I did,” she said about being proactive with healthcare. “I’m very lucky that I was able to go when I went, but advocate for your health. If one doctor isn’t listening to you, find another one and don’t take ‘no’ for an answer if you really do feel something is not right with your health. Doctors are busy: they are seeing so many patients, everyone [at hospitals and clinics] is so understaffed. Keep talking, keep fighting, and make sure that your story and your issues are heard and hopefully you’ll find someone that’ll be able to help.”
