By Allison Ong
To the distributor of this letter: The following “letter to a new diabetic” is intended for a newly-diagnosed teenager or young adult. I promise there is no vulgar or inappropriate language here; however, the insight and advice contained within is suited for an older audience. Given that my current age is 20, I believe my letter suitable for anyone age 13 and up, who will most likely be the primary caretaker for the remainder of their diabetes journey.
Hello there, new diabetic.
By now, a slew of physicians, specialists, and nurses may have buzzed through the doors of your hospital room at all hours of the morning to prick your finger, give you a shot of insulin, or force you to pee in their tiny cubicle of a bathroom.
Perhaps you visited your doctor’s office the other day and tested for an abnormally high blood glucose of 275, alarming enough to warrant an immediate visit to the hospital. Or perhaps your type 1 diabetes went unchecked or undiscovered like mine did ten years ago; perhaps, like me, you were rushed to the emergency room half-conscious in the back of the family car, having lost 15 pounds of weight and risen to a glucose level of nearly 1500.
Whatever journey you took to get here, you will now find yourself walking the same path that millions before you have walked as well.
I don’t mean to scare you. I have no idea who you are, what you think about your new diagnosis, or what kind of environment you will return to after the endocrinologist on call sets you loose upon the world once again, to a life where “normalcy” is supposed to resume. But I don’t want to be dramatic. I want to be realistic, and optimistic, and helpful in any way I can in regards to your new situation.
Type 1 diabetes isn’t a one-size-fits-all disease. It cannot be controlled at all times by the logic of science and mathematics. Every diabetic’s body responds differently to insulin, carbohydrates, exercise, stress, hormones, and emotions. Every diabetic must forge his or her own path to healthy daily management, and this requires tremendous feats of time, effort, and thought. Believe me when I tell you: it’s a lot of trial and error, even ten years later.
Diabetes is not just a physical or medical challenge for me, but a challenge to my entire body and my entire self.
Please do one thing for me: approach type 1 diabetes with an open, flexible heart. Approach this disease ready to learn, to fail, to struggle, to triumph. Approach this disease willing to educate others, to support others, and to accept support yourself. Approach this disease with guns drawn and blazing, pumping yourself up every day to do your best. To check your blood glucose before you drive and before you go to bed. To give yourself insulin 20 minutes before every meal. To faithfully log your statistics every day for a week, to discover how your body is rewiring itself in its new fashion. To overpack diabetes supplies for that one-week vacation, and always (always) in your carry-on luggage. To troubleshoot, to plan ahead, and to reflect on your day when all is said and done.
That’s a lot of things to keep track of. I’m sorry.
Plus, you’re probably being bombarded with a ton of diabetes terminology—or, if your care team is kind, it’s being spoon-fed to you little by little. Learning diabetes is like learning a new language, or learning new definitions to words you thought you already knew: bolus, hemoglobin A1C, Novolog, infusion set, fiber, low, high, ketones, prescription. After 10 years of having diabetes, I don’t see food without seeing numbers. After 10 years of keeping myself alive and kicking with computers and drugs, there are more than a few ways my life—and my perception of it—has changed.
As I said, diabetes isn’t one-size-fits-all
But there are a lot of up sides to diabetes as well—a lot of reasons why you should feel empowered to embark upon this new journey, rather than hindered. A lot of reasons why you should look forward to the period of time when you’ll finally feel comfortable with diabetes; when it becomes a natural and accepted part of you, like a quirky and slightly unnecessary iPhone upgrade.
I’ll tell you a little about myself, to prove to you that I am actually a real person with feelings who isn’t writing about this disease from an impersonal, textbook-style viewpoint.
My name is Allison. I am 20 years old, and I attend a large public college in the city of Los Angeles, California. When I was eleven, I had no knowledge of diabetes except that “you couldn’t eat sugar.” For fun, I figure skated, played piano, and drew. There were no type 1 diabetics I knew of in my family tree, or in my school; some of my grandparents, of course, would develop type 2 later on. I was a completely normal, if not underweight fifth grader in Southern California.
Then I was diagnosed. I already mentioned that Diagnosis Day was a near-death experience for me. I spent my last day of ignorance stumbling through the hallways of my elementary school like a drunk, freezing juice boxes in the middle of the night so I could crawl back down the stairs and suck them dry two hours later. When I was diagnosed I wasn’t sad. I learned about diabetes, yes, and learned how to take care of myself. But I was very young. The phrase “chronic illness” didn’t strike me as something to be overly scared of, because I hadn’t yet learned that a future to be scared of existed.
My parents broke down as my endocrinologist taught them how to use syringes at the hospital. They were learning how to pinch skin and deliver shots of harmless saline solution into fatty tissue, when I think it finally hit them that I, their very skinny, little daughter, didn’t have much fatty tissue available to be pinched three times a day for the rest of my life. The news hit them much harder than it hit me.
From then on, diabetes became a bit of a rollercoaster.
I became independent with my disease early on. The school nurse made me take my insulin in her presence every day at lunch, but when I hit sixth grade I said I’d had enough. When I switched from shots to the Animas insulin pump—and later to Medtronic—my life changed for the better. (Warning, that was kind of an advertisement for pump therapy. But I love it.) Suddenly, I had the power to control diabetes in my pocket 24/7. With computerized settings and automated dosages, my parents very quickly became secondary caretakers to the disease I decided to shoulder on my own. As early as middle school, diabetes was completely my business and my business only.
There are a lot of up sides to diabetes as well—a lot of reasons why you should feel empowered to embark upon this new journey, rather than hindered.
I was never horrible with diabetes management. If you’re wondering what scale I’m judging myself on, it’s called the A1C. (It might look scary the first few times you’re tested; don’t worry.) I never did horribly, no, but I never did a stellar job either. And as my high school years began, I realized that I – the academically gifted student, the older sister, the artist, and the tennis player – didn’t have my life together after all. I was surviving with diabetes, and keeping it in check. But I wasn’t thriving with it.
Throughout all of this, however, I got closely involved with the diabetes community. I encourage you to do the same. I attended diabetes summer camp for four years of my life, forming some of the best memories of my childhood. (They’re everywhere. Please look them up.) I volunteered with my local JDRF chapter. I participated in a fashion show for type 1 diabetics in Orange County. I was even a Girl Scout, and completed my Gold Award project with the diabetic community as my main focus.
But diabetes wasn’t—and still isn’t, really—my main priority. And I’m not suggesting it should be yours either. But you should come to realize that type 1 diabetes isn’t something you should ignore, or write off, for several reasons. Here are my own reasons: first, there were very real medical complications I could develop as a result of poor management. Second, I wanted to be a role model for myself, my brother, and anyone else who needed one. Third, I was tired of feeling helpless and incompetent.
The journey to self-improvement is ongoing. It will never end, and that’s to be expected; diabetes is not just a physical or medical challenge for me, but a challenge to my entire body and my entire self. It challenges my values, my self-image, my willpower, and my character. It challenges my past, my present, and my future. Chronic illness, when so present in your daily life, will make subtle tweaks to your individuality that you may not notice immediately, but years down the road you will. Perhaps someone will point them out to you, or perhaps you’ll realize them yourself.
Approach this disease ready to learn, to fail, to struggle, to triumph.
But there’s an even bigger takeaway from diabetes that I’ve discovered, multiple times in various forms: diabetes isn’t just a disease, a diagnosis, or something to be dealt with and pushed away. It’s not an allergy, that only applies to your well-being in certain situations of danger—it applies every day, to many things that you do. It also shouldn’t be a death sentence, because you have lots of technology and so many resources to help you succeed and live as healthy an existence as anyone else in this world. What’s remarkable about diabetes, at least to me, is that if you choose to let it in, diabetes becomes a point of growth. It becomes a point of encouragement and strength, and maybe even honor.
Diabetes has taught me empathy. It unloaded a world of responsibility on to my shoulders at a time when no one else my age had such a task, and it taught me how to be independent. It gave me patience, and versatility, and a deep appreciation for life and its transience. I identify easily with others who have medical problems of their own. I meet other diabetics and it’s instantly like meeting a long-lost brother or sister. It’s just so easy, when you meet a stranger who knows more about a weird little part of yourself that even your non-diabetic best friend, boyfriend, or mother can never gain full access to.
Diabetes has also shown me what I hope to pursue in life. It has shaped my dreams and my future, not only in my career, but who I hope to be as a person.
Diabetes has also depressed me, discouraged me, and broken me down beyond belief. At times I’ve hated diabetes; at times I’ve loved it; at times I’ve just felt okay with it.
Please know that you are not alone.
“Okay” isn’t all I want you to feel. I hope every diabetic not only survives with this disease, but finds some sort of purpose in it. I’m not saying you should climb every mountain in the Himalayas and become a diabetes guru for the good of mankind. I’m not saying you should tell each and every one of your friends that you have diabetes and you have this newfound mission in life to educate others about it (though I do encourage lots of openness, and lots of self-acceptance).
In fact, I don’t think diabetes should be on the forefront of your mind at all times; not at all. Heck, it’s far from the forefront of my mind at the moment. Diabetes is part of my definition, but is far, far from being my entire definition. I am more than a “girl with diabetes,” and my life consists of so much more than shots and daily exercise and internal calculation.
But diabetes is life-changing in more ways than one, and there’s as much to be appreciated from the experience as there is to be learned and lamented. You may not think diabetes can grow to be very important in your life, and maybe you’re right—but most likely, it will impact you in some way you didn’t expect. It will never, ever take over who you are. But it will become a part of your life’s history, just as it has become part of mine.
Please know that you are not alone. Whether you are cruising and adjusting well to diabetes, or in need of some advice, or simply interested in connecting with others who understand what’s happening in your life, know that there is an entire community out there ready to receive you.
It may be hard to ask for help. I still struggle with it, and often when I feel in need of guidance or intervention, I shrug my shoulders and say to myself, ‘It’s okay. I can do it myself.’ It’s a perfectly valid and noble reaction, but—
If you need support, if you need a second opinion, if you need anything, anything at all to assist you through the initial twists and turns of this journey—
Ask for help.
I hope this letter finds you well, and that you are ready to meet this challenge of T1D with positivity, tenacity, and heart.
Good luck.
Note: This article originally appeared on ENDPAIN–a unique organization using storytelling and narrative to shift perspectives on pain.
Photo Credit: Henning Westerkamp (Pixabay), Henning Westerkamp (Pixabay), Giulia Bertelli (Unsplash), Adobe Stock Photos and iStock Photos