As doctors and nurses huddled around me, introducing themselves as hurriedly as they pricked my fingertips with needles and stuck IVs in my veins, and I tried my hardest to tune out the surrounding chaos of the emergency room on a holiday weekend, I had just one thought running through my mind: Please don’t be diabetes. Before that weekend, it had never once occurred to me that diabetes was even a possibility for me. I was well into adulthood, having celebrated my 27th birthday just two weeks earlier. I had always been the picture of health and had no family history of the disease. But when I saw my doctor earlier that morning, following weeks of wide-ranging (and increasingly worsening) symptoms, like fatigue, extreme thirst, and significant weight loss, and he ordered an ambulance to take me to the hospital after my glucose reached dangerously high levels, it seemed, unexpected as it was, that a diabetes diagnosis may be in my future.
Even so, I spent the hours that followed in utter denial, desperately clinging to any other explanation. From what I understood, diabetes was the product of an unhealthy lifestyle, with lots of junk food and little physical activity. I recalled heeding parental warnings not to eat too much candy and sweets, lest I develop the disease and tearfully watching as Julia Roberts’s Shelby died from diabetic complications in Steel Magnolias. More recently, ads for drugs like Ozempic and Mounjaro, which promised weight loss to diabetics, only further solidified my idea of what a person with diabetes looked like. I believed that diabetes was the punishment brought on by a person’s unhealthy choices, and it was deserving of all the stigma that surrounded it. So, when the doctors returned to confirm my new type 1 diabetes diagnosis, I was horrified and heartbroken, and I didn’t know what I’d possibly done to bring this on.
What I soon learned, however, was that my understanding of diabetes was all wrong. What I thought I knew about it was entirely incorrect, and I was far from alone in having these misconceptions.
Meet the experts:
Michael Natter, MD, is a board-certified endocrinologist at NYU Langone Health in New York City
Elana Dumont, PsyD, is a New York City-based licensed clinical psychologist
David Ahn, MD, is a board-certified endocrinologist and chief of diabetes at Hoag Hospital in Newport Beach, California
In this story:
The difference between type 1 and type 2 diabetes
Confusion around diabetes is widespread, and most of it stems from a lack of knowledge about its different types. The two most common, type 1 and type 2 diabetes, are often grouped together (including by the CDC), despite being two different conditions. Although both result in high blood sugar and can lead to the same kinds of symptoms, type 1 is actually an autoimmune disease, whereas type 2 is typically brought on by lifestyle factors. “Type 2 diabetes is a real epidemic, and if you look at prediabetes and type 2 together, it makes up almost 50 percent of the adult population [in America],” says Michael Natter, MD, a board-certified endocrinologist at NYU Langone Health in New York City, who specializes in treating diabetes. “Most laypeople assume diabetes is diabetes, so when someone says diabetes, it conjures up an image of type 2.”
Diabetes is one of the oldest known medical conditions, having appeared in historical documents as early as 3,000 years ago. Because the symptoms and end result of high blood glucose are the same for all diabetics, it wasn’t until 1936, a decade after the discovery of insulin, that diabetes was classified into two types. While insulin injection helped successfully manage the disease in many cases, others didn’t respond to the treatment, making it clear that the absence of insulin was not always the issue.
Patients with type 1 diabetes “just don’t make insulin,” explains Dr. Natter, who has been living with the disease since age nine. “It’s an autoimmune condition that we have no control over. It doesn’t manifest with excess weight, and there aren’t any kind of lifestyle indications for why we have it.” The result is very high blood sugar, which can only be returned to normal levels with the aid of supplementary insulin injections.
Type 2 diabetes, on the other hand, is a metabolic disorder that develops over many years and results in resistance to insulin, meaning that, unlike with type 1, the pancreas continues to produce insulin, but it’s either not enough or is unable to be used effectively. While type 2 diabetes is often associated with obesity, unhealthy diet, and inactivity, genetics and family history can also play a large part.
The biggest difference between the two types of diabetes, though, is that type 2 can be reversed — or as Dr. Natter prefers to say, “put into remission” — by lowering one’s A1C, which typically happens with weight loss, either through diet and exercise, by taking certain medications, or through a combination of the two. Type 1, on the other hand, at least as of right now, is permanent and irreversible and must be managed with insulin therapy.
What causes type 1 diabetes?
Historically, type 1 diabetes was diagnosed mostly in children and teens, so much so that it was called “juvenile diabetes” until just a few years ago. In reality, the autoimmune disease can occur at any age. Adult-onset type 1 diabetes is actually on the rise, accounting for more than half of all new diabetes cases in recent years, though doctors aren’t yet sure why this is. Because it’s still widely regarded as a childhood condition, however, many adults who are diagnosed with type 1 diabetes are shocked and confused to learn of it. “When you’re an adult getting this diagnosis, it’s a bit like, what is this? I didn’t know I could have this now,” says Elana Dumont, PsyD, who was diagnosed with type 1 at age 23 and now works with other diabetics at her psychology practice in New York City. “There’s this moment of shock and anxiety around what your life is going to look like from here on out.”
For many in this position, myself included, there is no way to make sense of this diagnosis, no single cause to blame, and the randomness of the disease can feel impossible to cope with. While family history was long believed to play a role in the occurrence of type 1 diabetes, this risk factor is actually absent in most cases: Roughly 80 percent of type 1 diabetics have no family history of the disease.
There does appear to be a link between type 1 diabetes and other autoimmune diseases. “Autoimmune conditions get lonely, and they tend to travel in packs, so things like thyroid disease, lupus, and rheumatoid arthritis all run along a similar gene,” Dr. Natter notes. “And if that gene is in the family line, it increases the likelihood and potential for being passed along at some stage. It’s not what we call autosomal dominant, so it doesn’t mean that if you have it, your kid’s going to have it and their kid’s going to have it, but it does mean a higher chance that they’ll have some flavor of autoimmune disease.” There is little concrete evidence of this connection, though, so it remains scarcely discussed outside of endocrinology.
Even those who have a potential predisposition to type 1 diabetes through the occurrence of other autoimmune disease are rarely aware of their increased risk until it’s too late. Although there is currently no way to prevent the condition from developing, establishing a predisposition to type 1 diabetes can enable that person to be on the lookout for specific symptoms — like exhaustion, blurred vision, weight loss, and thirst — and to act on them more quickly, rather than letting the disease go undiagnosed long enough for it to have potentially fatal consequences, as so many diabetics do. Additionally, those who remain unaware of their increased risk unknowingly forgo the chance to test for autoantibodies or to postpone the onset of the disease by up to several years with new drugs like Teplizumab. Instead, their type 1 diabetes diagnosis comes as a complete surprise, and they are forced to grapple with the sudden transformation their life will now take.
Dealing with the misconceptions around type 1 diabetes
Even when type 1 diabetics are able to make peace with their diagnosis, they often must confront the misunderstandings of others. “I hear people say things like ‘I’m so going to get diabetes’ whenever they eat something sweet, and it’s just so frustrating because obviously, no one who has type 1 diabetes got it from eating sweets,” says international model Bambi Northwood-Blyth, who has had type 1 diabetes since age 11. “In those terrifying moments when I’m low — when your blood sugar is dropping, your heart is racing, and your eyes are blurry — candy or something sweet is literally a life saver, the only thing keeping me from death, the same person is giving me side eye, like that’s why you have it.”
“I hear people say things like ‘I’m so going to get diabetes’ whenever they eat something sweet, and it’s just so frustrating.”
The idea that type 1 diabetics “did something wrong” to cause their disease may sound ridiculous to those who know it’s an autoimmune disorder. But because the vast majority of people equate all diabetes with type 2 diabetes (and even then, neglect to consider non-lifestyle factors behind that condition; there is no “moral” or “immoral” type of diabetes) these misconceptions persist. According to a 2017 study from Clinical Diabetes, as many as 76% of type 1 diabetics report experiencing stigma. “This can be extremely offensive,” says David Ahn, MD, a board-certified endocrinologist and chief of diabetes at Hoag Hospital in Newport Beach, California. “One of the worst feelings in general is to be wrongly accused of something you didn’t do. The fact that this misunderstanding is regarding a lifelong chronic disease without a cure only makes it worse.”
This confusion can of course be incredibly upsetting for type 1 diabetics, who frequently feel the need to defend themselves and their disease, but it has also given rise to a secondary issue: sewing division between type 1 and type 2 diabetics, often pitting the former group against the latter. “If someone confuses you for type 2 and you find yourself feeling defensive, I would wonder what it means to you to have people make these mistakes about you,” Dr. Dumont notes. While stigmatizing societal beliefs around obesity can certainly help explain some of the urge to distance oneself from the disease, she believes these reactions only further stain type 2 diabetes and contribute to the ongoing misconceptions type 1 diabetics face. “I think it’s our responsibility to examine why it’s so triggering to us, because really, every person should be entitled to medical care and understanding, regardless of their condition.”
Living with type 1 diabetes today
The medical, psychological, and sociological understanding of type 1 diabetes is evolving every day, and so too is the approach to its management. With rapid innovation in wearable devices, like continuous glucose monitors and insulin pumps, and advancing research on potential cures and alternative treatment, including stem cell therapy, living with the autoimmune disease today looks very different than it once did. Not even 100 years ago, before the advent of insulin, more than 90 percent of those with type 1 diabetes died within five years of diagnosis.
For a long time, the general attitude towards managing type 1 diabetes was to maintain a healthy diet and all but avoid carbohydrates (the source of glucose) entirely. In recent years, this has changed. “Generally speaking, I think the misnomer is that you can’t eat certain things, that you shouldn’t eat sweets and you should restrict carbs and all that,” says Dr. Natter. “But in truth, that’s not necessarily the case. I have plenty of patients who are type 1, who are very fit and have A1Cs of 6, who eat bowls of pasta for dinner. It’s doable.”
Every bite of food we eat, every jog we take, every minute we sleep, and every bout of stress we experience impacts our ability to live.
According to the CDC, there are approximately 2 million people with type 1 diabetes living in the United States today. Although there are certainly shared experiences and commonalities amongst them all, no one case is the same as the next. Living with this disease is entirely individualized, and what works for one person may not work for others. But whether it leads to frequently enjoying spaghetti dinners or following an exclusively low-carb diet, having type 1 diabetes can often feel like a full-time job. In addition to the seemingly innumerable injections, insulin pump changes, doctor’s appointments, stubborn high blood sugars, and frightening lows, those living with type 1 make an extra 180 health-related decisions every day, a 2014 Stanford study found. Every bite of food we eat, every jog we take, every minute we sleep, and every bout of stress we experience impacts our ability to live, so we have no choice but to think it all through thoroughly.
On top of those decisions, we, like so many people with chronic illness, have the secondary burden of educating those around us. “It can be exhausting, and trying to explain to someone and convince them of how hard this is can feel impossible,” Dr. Dumont says. “We can sit there and tell people everything about this disease, but on the day to day, they’re not thinking about it.”
For many, being a type 1 diabetic means also being an activist, often for a cause we didn’t choose to elevate. “I don’t think anyone really wants to be the advocate or the voice for diabetes, but it’s such a 24/7 condition that you have to be able to stand up for yourself,” Northwood-Blyth says. “It’s frustrating that it all falls on us, but the more it’s spoken about, written about, and seen, the more this conversation can unfold and the more it will educate.”
No one in the type 1 diabetes community expects non-diabetics to know the intricate details of this disease, how it impacts our daily lives, or the ever-evolving nature of its treatment. On the contrary, most of us welcome curiosity and questions about our condition and how we live with it. But as with any medical condition, judging those affected by it, offering unsolicited advice, or perpetuating the existing stigma around it is always unhelpful.
As celebrities like Nick Jonas discuss their experience with type 1 diabetes, athletes like tennis player Alexander Zverev fight to use insulin courtside, and models like Lila Moss and Northwood-Blyth proudly display their continuous glucose monitors on runways and red carpets around the world, it does feel like a tide is turning, like greater awareness of the disease and its realities is in sight and like the many myths surrounding it may finally be corrected.
For 27 years, I lived in blissful ignorance, unaware of what this disease entailed. It took being diagnosed with type 1 diabetes and coming dangerously close to death for me to confront the many judgments and misconceptions I had about the condition. But it shouldn’t take a life-changing diagnosis to understand the realities of diabetes, or to realize that health issues should never dictate our self-worth.
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Originally Appeared on Allure