I have type 1 diabetes. It’s an autoimmune condition that affects less than 1 percent of the world’s population and can be diagnosed at any age.
Getting type 1 diabetes has nothing to do with lifestyle or diet and, to date, there is no cure and we don’t know why some people develop it. There are decent treatment options though, and the majority of people with type 1 diabetes can now live long and relatively normal lives.
Type 1 diabetes is genetic. It lies dormant, and then one day it hits you right smack in the head. I think I was lucky in the sense that it didn’t manifest until I was 19 years old. That meant that I got to be a child and teenager without having to deal with diabetes.
Not to mention that my parents didn’t have to go through years of getting up multiple times every night to test my blood sugars, or be nervous about me staying with friends, going out, etc.
My diabetes diagnosis
Back when I graduated from high school in the summer of 1997, I partied hard and ate whatever I wanted. I was constantly hungry and started the habit of ending most days by eating a box of ice cream. I was also super tired, constantly thirsty, and didn’t gain weight despite my insane calorie intake. But hey! I was partying and didn’t really think about it too much.
My family started to notice that something was wrong after I had to have a nap during a family gathering and urged me to see a doctor. I did, and he lectured me on proper nutrition for a while and then, just to be safe, measured my blood sugar. The results pretty clearly showed that I had diabetes. That was a Friday.
The doctor sent me home and told me to go to a specialist on Monday. I remember biking home, not knowing what the heck diabetes was and thinking that I was dying. That was incredibly scary.
I didn’t know anybody with diabetes and was completely clueless as to what it all meant. In hindsight, my doctor should have done a better job of explaining the situation to me, and if I hadn’t been so shocked, I should have asked more questions.
To this day, it baffles me that he would diagnose me with diabetes on a Friday afternoon and just send me home. I obviously still had some insulin production (that stopped completely later, which is to be expected) since I could still function and didn’t look like a walking skeleton, but still.
Any diagnosis like that is a major traumatic event and I had to spend the entire weekend deathly nervous about what was going on.
On the other hand, it was actually a huge relief to know why I had felt out of whack for so long. It’s interesting how we humans can adapt to a situation and start accepting it as our reality. Like the fact that I hadn’t been able to sleep through the night or sit through a movie without having to go to the restroom, or that I was tired and had no energy.
Seeing a specialist and getting the right support
On Monday morning my mom and I arrived at Steno Diabetes Center, one of the best diabetes treatment facilities in Denmark (and possibly the world), and they confirmed that I indeed had type 1 diabetes with a very small remaining insulin production.
I was assigned a nurse named Lotte, and she became my lifeline for the first few years. She was great because she firmly believed that I should live my life just like any other 19-year-old. I really took that to heart, and still live by the philosophy that I do not live my life to fit my diabetes; I manage my diabetes so it fits my life.
Aside from starting on insulin, inducing the first hypoglycemic event (to ensure that I knew what it felt like and what to do about it), and teaching me basic carb counting, those days at the Steno Diabetes Center gave me a great foundation for my life with diabetes.
I often get asked if the needles scared me. It’s funny – I’ll almost faint if I get a vaccination, but injecting myself was never a big deal. I remember sitting there with Lotte and another nurse looking at me, thinking “Well I guess that’s what I have to do to survive”, so I just did it. It didn’t hurt and now it’s second nature.
Living with diabetes
I did what Lotte suggested and still pursued all my dreams.
In November of 1998 (less than a year after my diagnosis), I packed my backpack and traveled around India for 3 months. Lotte and I kept in touch via fax (yes, fax!!), and when my insulin got spoiled by heat (twice), I managed to get new shipments sent to me in Bombay.
It went fine. I had a great time, and it boosted my confidence to know that I could manage my diabetes, even on a 14-day camelback ride across Rajasthan.
After my diagnosis, I continued eating like I did before. My body had been starved for so long due to the lack of insulin that I probably needed the extra calories, but I went a little overboard. I cut out the box of ice cream, but I still ate like two grown men. So I gained weight, and I gained a lot of it very quickly. After 20 pounds I pulled the breaks, and that’s when my fitness journey started.
I’m not saying it was easy, or that it is easy living an active life with diabetes, but I am saying that a diabetes diagnosis shouldn’t be a hindrance to living a full life.
The diagnosis was scary, but for me, it wasn’t so much the diagnosis, the needles, or the blood sugar testing that bothered me. It was more the uncertainty about whether I could still do all the things I had planned to do with my life.
Luckily, all my experiences so far have taught me that there is (almost) nothing you can’t do with diabetes!
A little practical advice
To finish off this post, I would like to give a little practical advice on what to do after your diabetes diagnosis (the more difficult emotional advice will have to wait for another post).
- Find the right doctor. Your regular doctor is typically NOT qualified to deal with diabetes so you need a specialist (an endocrinologist) if possible
- Tell your friends and family. Not only will they have a ton of questions, but you will also need their help and understanding while you figure out to handle your diabetes yourself. If you have a hypoglycemic episode in school or at work, you want the people around you to know what is happening
- Join an online network. There are some really good forums and Facebook networks where you can ask questions and get support (like Diabetes Strong’s Facebook group)