living with type 1.5 diabetes: ‘i stopped being ashamed of it’
betsy cheng wants people to connect with the diabetes community, especially if they feel alone
5 minute read
newly diagnosed with type 1.5 diabetes, betsy cheng tried to make sense of her day-to-day with a chronic disease, recognizing that she had to change in some ways, like managing the fact that everything she eats affects her sugar levels. “it's like a puzzle every single day,” she says of the pressures.
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betsy cheng is still getting over a flu that’s been dragging on for weeks. it takes her twice as long to recover from illness because of her compromised immunity.
“for my husband and my kid, if they get sick, two to three days, and they’re perfectly fine. four days max,” says the toronto woman and tech support professional at a company call centre. she works remotely. “it’s frustrating because i don’t want to miss work. but if i can’t even get up to function and be productive, i can’t be at work.” that’s one of the challenges of balancing work, home and a chronic disease.
living with type 1.5 diabetes
betsy, 39, lives with latent autoimmune diabetes in adults (lada), also known as type 1.5 diabetes, a type of diabetes that starts in adulthood and slowly gets worse over time. she told her manager that she might need a lot of sick days during the job interview early last year and was reassured the company would support her health needs.
these days, she shares her diagnosis openly with the world on instagram (@ladadiabeticb)to create awareness and build community (where many appreciate her warmth and flaming red hair). not everyone knows what type 1.5 diabetes is. what’s talked about typically is type 1 diabetes, the autoimmune disease that kills insulin-producing cells in the pancreas, and type 2 diabetes, where people become insulin-resistant and they’re not able to use the insulin hormone as needed to power body functions. but there are actually many forms of diabetes.
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“when i was first diagnosed back in may of 2008, i was misdiagnosed. they told me i was type 2,” she says, explaining that at age 22 she had unexplained weight loss from the loss of muscle mass and she was always thirsty—two common symptoms of the disease. her gp sent her to a diabetes clinic where she was admitted to hospital on the may long weekend because her blood sugar levels were so high. “i was in the hospital all weekend long hooked up to ivs and insulin,” she recalls.
when the endocrinologist, the doctor who specializes in hormone-related disorders, said she had type 2 diabetes, it didn’t make sense to betsy. “i wasn’t an older adult. i was a young adult. i played soccer. i run. i do all these physical activities. because most times when type 2s are diagnosed, you’re in your 40s or 50s and generally you’re overweight.” about a month later, she went back to her endocrinologist for the follow-up and was told that she was type 1.5.
“that’s when i was like, ‘what the heck is 1.5?’”
what is type 1.5 diabetes?
like type 1 diabetes, lada happens when the pancreas stops making insulin, usually because an autoimmune process is attacking cells in the pancreas. but unlike type 1 diabetes, in lada, the process happens slowly. some people who have lada often don’t need to take insulin right away.
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for betsy, she needed to start insulin injections and make lifestyle adjustments to keep her blood glucose (blood sugar) levels in a good range, avoiding dangerous lows and highs. it was a big learning curve, she says.
“i remember thinking, ‘ok, i’m a diabetic. i can still do what i do.’ i think it didn’t really hit me until a month later because i was denying it for so long, just going through the motions of testing my sugar levels, manual injection, blah blah blah. but i didn’t realize how much of an emotional toll i was avoiding.”
she was sitting with her boyfriend watching a comedy film when she broke down in tears.
“all of a sudden, i realized like, oh my god, being a diabetic is so hard. and at the time, there weren’t as many resources as there are now,” she says of the isolation she felt. there was no instagram or online community to reach out to for support and advice, and she didn’t want to keep asking her healthcare team.
instead, she decided to hide her disease from others as a way to cope and not have to answer questions. she was trying to make sense of her day-to-day with a chronic disease, recognizing that she had to change in some ways, like managing the fact that everything she eats affects her sugar levels. “it’s like a puzzle every single day,” she says of the pressures. working through mental turmoil led her to acceptance and renewed self-confidence.
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“i realized that i can’t hide this. eventually i’m either going to have a sugar low or a sugar high or something. god forbid something happens to me. and my employer’s going to be like, ‘what’s going on? why didn’t you tell us that you were diabetic?’ it’s my life. i can’t risk that. so i tell everyone that i’m a diabetic and i’m going to have moments where my diabetes will take over my health and i have no control over that. i stopped being ashamed of it and just started being like, i’m a diabetic and if i need help, i need help.”
expressing yourself with diabetes
she started her social media outreach so that others wouldn’t hide and push diabetes away like she did. her message to those newly diagnosed is to acknowledge and feel every emotion because it is hard.
“you’ve been diagnosed with something that you didn’t ask for. it’s a complex disease. as i always say, ‘we’re so much more than a google search.’”
has the disease changed her?
she’s clearly outspoken and a leader in the diabetes community, sharing her thoughts for diabetes awareness month.
“i travel, i’ve gotten many tattoos since being diagnosed as a diabetic, so that doesn’t stop me. i’m still relatively new to the diabetic tech world but it’s advancing every single day,” she notes of her continuous glucose monitoring device and insulin pump.
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living with diabetes today, compared to 2008, means information about the disease is at your fingertips, which can be a “blessing and a curse.” she wants people to connect with the diabetes community, especially if they feel alone. “it’s so welcoming. it’s so nonjudgmental.” she also appreciates a shift in public recognition and diabetes representation that counteracts stigma.
“mattel released a diabetic barbie (with type 1 diabetes), which was amazing. but then some of the comments i would read were very hurtful like ‘my daughter doesn’t want to grow up being a diabetic’ or ‘that’s not what a diabetic looks like.’ i’ve heard responses from men, girls and boys who are diabetic and how happy they are to see someone just like them. that’s important.” betsy also mentions the representation in pixar’s turning red animated movie in 2021 with a character living with type 1 diabetes who wears a continuous glucose monitoring system.
“i love seeing this representation about being diabetic. it’s not a death sentence. it’s not the end of the world.”
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