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Dealing with Type 1 Diabetes in Japan with “Luminary Xion”

By 7 min read

It was the fatigue, she recalls; the constant, dreadful exhaustion that had been making her body motionless and longing for rest for over several months. “It’s just stress,” she would brush it off, naively imagining that if only she would get some extra sleep over the weekend, she would be back to her bubbly self she had always been. Until one morning in October 2013 when she finally collapsed, finding herself hospitalized in a foreign country, without a soul to rely on and without the ability to understand the doctors — both linguistically and culturally.

No, this is not a scene from Doctor House; it’s the story of a healthy young American woman who came to Japan to pursue her dreams and ended finding out she was suffering from Diabetes Type I — an incurable disease that was to define her life in her new home away from home.

Luminary Xion, or “Lumi” as she likes to be referred to by nickname, came to Japan in February 2011 at the age of 29, beginning a career as an English teacher in a country she fell in love with by chance. “Bored by my 9 to 5 job and life in general, I came across this funny video of a few guys trying to make a dismal celebrity smile, and it caught my attention,” Lumi recalls. “It made me want to know more about Japan and see how people there are really like.” A year later, backed up with experience as a volunteer at Japanese events in the U.S., Lumi finally found her way to Japan, filled with enthusiasm.

At the time her health began deteriorating, Lumi — 31 at the time — was working at a Japanese company as a foreign staff coordinator, recruiting part-time language teachers. “The job was extremely stressful,” she remembers, leading her to attribute her intensifying weakness to her busy schedule. But for months she had been feeling that her health was falling apart.

“I remember feeling very tired all the time — and very, very thirsty,” she recalls. One day at work, the exhaustion peaked to a level that she couldn’t find the strength to reach to the printer that was just behind her desk. She took the rest of the day off, went back home longing for sleep and woke up the next morning, vomiting. “This was the turning point for me. I know that when I reach that level, something is really wrong.” Barely walking, she managed to reach the local hospital, explain her symptoms, then doze off at the waiting room. The hospital staff, assuming she was dehydrated, placed her on IV drips, nonchalantly waiting for her to get better. Little did they know that they were nearly killing her.

“Somehow I was feeling hypoglycemic and asked the nurse if I could have something to eat,“ Lumi recalls.

“It was then when they went… wait a minute… hypo-what?”

The scene suddenly changed dynamics, turning the hospital into a panic room, the nurses blue-faced, preparing for multiple tests. Lumi’s blood tests showed that she was the contrary to being hypoglycemic — she was in a critical state with blood sugar levels of nearly 500 mg/dl, which exceeds the normal limits by nearly 380 mg/dl. The hospital staff removed the IV drips and straight away taught her a new Japanese word — nyuin — “You’re hospitalized.” But no one told her why.

For the next week, Lumi stayed at the Japanese hospital not knowing what is happening to her body, though having a hunch that it had to be something serious. A week later, her doctor finally called her in, looked into her eyes and confidently defined her fate: “We think you have diabetes.” Then he kindly handed her a handwritten single sheet of paper, equivalent to a blurb from “Diabetes for Dummies,” and shook his head in content — he had explained it all.

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“I knew enough of diabetes to wish that it was at least type 2,” Lumi grins.

With only approximately 10% of the estimated 415 million people living with diabetes worldwide, according to a 2015 data by International Diabetes Federation, Type 1 diabetes is the more severe form of the disease, because the body is unable to produce insulin. In other words, the disease cannot be controlled in any other way but continuing to inject insulin, regardless of what and when one consumes. From that moment on, Luminary was put on fixed insulin, and was told to “be careful” what she eats and to “watch out for calories and fat.”

“A lot of the information I got from my doctor was blatantly incorrect,” she says, recalling that the medical crew in charge of her at the time advised her nothing else but to inject insulin if her glucose soars, and to “eat more” if her doses go low.

“I wanted a partner, someone who would help me fight my condition,” she says. “But at one point I was told that if I need a one-to-one attention, I should probably turn to a university hospital, because I wasn’t getting it there,” referring to her city’s largest hospital.

Frustrated with the lack of information and care at the hospital; hopeless with her condition and inability to find reasoning in what was going on, Luminary turned online for help, devoting most of her time on conducting research on her condition. It was also at this time when she decided to took it to the Internet and launch her “Diabetic in Japan” YouTube channel, through which she would share her story in hope that her experience would benefit others.

Luminary’s research linked her to a variety of online diabetic groups, both in and outside of Japan, who helped her gain the information she needed and the courage to continue fighting. A major positive change she went through at the time was the discovery of the insulin pump, which she now uses instead of insulin shots. The pump, available in only two types in Japan, is a device attached to her body, which she can program to automatically insert insulin in her blood — alleviating the pressure of having to stab herself publicly, she says.  

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“I contacted the pump-manufacturing company, who gave me a list of hospitals that could provide (the pump) to me, and my hospital was on the list,” she explains. She persuaded her doctor that the pump is preferable to fixed insulin and soon after became the first foreigner at her hospital to rent it. It costs about ¥20,000 to ¥25,000 a month for renting it, she says, but it comes with free supply equipment.  

A second major uplift came when Lumi learned about the international service Nightscout. Organized by a group of parents of diabetic children as part of the campaign “#WeAreNotWaiting,” the service allows families of diabetic patients to monitor blood sugar levels online or on their devices — regardless of where their diabetic family members are based at. For Lumi, this service allows her family the peace of mind to be able to monitor her condition, assuring that she is alive. Currently the only member in Japan, Luminary is striving to promote the service domestically in Japanese and English.

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“I want to help other people in the same situation as me,” she says smiling.“ Being a part of an online community of people like me made me stronger.” And now she thinks it’s her turn to pay it forward.

“There is a huge stigma associated with the disease,” she tells me at last, as she finishes her gallette and smoothie at a restaurant in downtown Tokyo, assuring me that she’s by now in full control of her disease. “There are three different reactions when I tell people of my disease. There’s blame, there’s indifference and there’s paranoia. The most common one is paranoia, but blame is not uncommon either. I had been told it’s my fault…you know, all those crepes I had.”

Currently, employed full time as an English teacher, Lumi says that her life continues to be a constant adjustment. But when asked to give an advice to anyone who stepped in her shoes and found themselves diagnosed with an incurable disease while pursuing their dreams abroad, Lumi pauses for a minute and firmly says:

“Get a partner who can help you. Learn the language you need to cope with this. But most importantly, don’t be ashamed of it. It’s part of your life. It’s part of who you are.”

Then she smiles and promises to keep building her online information platform, filled with hope that one day someone out there will feel less alone in their struggles than she was three years ago.

To contact Luminary Xion visit her YouTube channel or Facebook page.

Note: Every diabetic patient has a different experience. This is one personal example and views and experiences expressed here are not necessarily applicable to anyone suffering from the disease.

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