I thought I’d take a crack at Diabetes Blog Week for the first time this year. It’s a week where diabetics from around the world follow writing prompts (found here) to share their experiences living with diabetes. The title for Monday was to write about Diabetes and the Unexpected, with the following prompt
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?
I could have thrown out tips for when the unexpected happens in daily life with diabetes. I would suggest for low blood sugars, have something sugary with you at all times – I prefer smarties or juice in my purse. For high blood sugars, always make sure you have backup insulin with you and (if you’re on multiple daily injections) back up syringes. And of course have enough test strips and a good battery in the glucose meter. Since I don’t wear a pump or continuous glucose monitor anymore I needn’t worry about supplies for either. That’s the easy part of the unexpected. The lived experience is not one I can explain, it’s one only diabetics really know and understand.
But when I read the blog I thought of how one can never be prepared for the diagnosis. I was diagnosed with type 1 diabetes in my second year of college, precisely one week before my 20th birthday. I was in school full time taking as many classes as they would allow in one semester, working, and interning in a lab with majors in psychology and economics. I was still coming down to take care of my mother who had been quite ill for the last year. The summer before I’d worked two jobs and I thought I was healthy. I was eager to prove myself and what I was capable of. I was excited by the weight loss, which I thought was merely a sign of my hard work and busy schedule. I also thought my schedule was why I was hungry and thirsty all the time and at other times why I got shaky and couldn’t focus. I did not realize these were signs of hyperglycemia and hypoglycemia.
My best friend’s brother had type 1 diabetes but we never really talked about it. His mother started recognizing the signs. Then my mother caught on, about the time I came down when her divorce was finalized. I thought it was a crazy notion. But one afternoon they decided they were worried enough to drive up to school to find me. My phone was off for class but when I turned it on and got their messages, I met them at the campus clinic where my life would change forever. The clear diagnosis was diabetes and my mother, my best friend’s mother and I rushed back to Denver where I could be admitted to the hospital for diabetic ketoacidosis.
Nothing prepares you to hear that you have diabetes. Nothing prepares you to face a life of injections and measuring out food and finger pricks and the mental impact that comes with this diagnosis. I remember the hospital had a channel on the TVs in the room that aired something about what to expect when bringing your baby home, but there was no channel for what to do when you bring your type 1 diabetes home.
Sure they gave me pamphlets and taught me how to draw up different insulins. They walked me through meal plans that I later realized were meant for type 2 diabetics and gave me the lectures that if I didn’t “control” my diabetes I’d lose my feet, my eyesight, and kidney functions. They however did not warn me about how my body might be covered in bruises, what it would mean to rearrange my class schedule so that I could eat and take insulin more consistently, to see the tiny scars on my finger tips from upwards of 7 pricks a day, the constant and overwhelming presence of a disease that frightened me and confused me. They could never have explained what a low blood sugar felt like or not to entirely freak out when my blood sugar wasn’t perfect. They did not screen me for how it would increase my anxiety, depression, and latent eating disorder.
I was not prepared for diabetes and I am not sure anyone ever is no matter what age you are. If I were to give any tips for newly diagnosed young adults with type 1 diabetes it would be the following:
- Know that your world will be turned upside down. If you have a good support system and stable environment, it will lessen the impact.
- Reaching out to others on social media will help you find others who understand and can sympathize. Follow the hashtags #DOC (for diabetic online community), #t1d (for type 1 diabetes), #dsma (for the weekly diabetes social media advocacy tweet chat), and #dcde (for the weekly Diabetic Connect tweetchat).
- Find a good endocrinologist as your primary care doctor will likely only know how to treat type 2 diabetes and even then their knowledge will be limited. In fact most doctors will not understand the diagnosis and not know how to use sliding scales and count carbs. Many will try to blame and shame you for your imperfections. Many will try to lecture you to make you fear the possible complications you could face.
- Seek out a therapist, particularly if you have depression, anxiety, disordered eating or other mental health issues.
- Know that some friends will desert you because it will be “too much” for them to handle. Know that you will gain new friends in other diabetics who get it.
- Know that you will face a society that will blame you for having this disease because they don’t understand that it is an autoimmune disease. Know that society will try to tell you how to live your life. Know society will make jokes about what you live with every day.
- Realize that information online about diabetes can be completely wrong – for example, cinnamon will not cure your diabetes.
- And above all, know that there is no “controlling” this disease. There is managing it and living with it but you cannot control what is an unexpected disease. You will have very high highs and very low lows. You will probably mix up your insulin types at one point or forget a shot. You will get your doses wrong constantly as all the calculations in the world will almost never add up and when they do, it’s probably just luck. You will do your best day to day and that will be enough.
This disease is harsh and unrelenting. But it will make you smarter and fiercer and stronger in ways you never expected.
Because diabetes is unexpected.
Know the warning signs for type 1 diabetes.
(graphic credit to Beyond Type 1)