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)
Pamela Hernandez
Hello from a fellow type 1 athlete! Thanks for sharing your D-Day story!
Dov Shapira
Thank you so much for sharing your story
I love the tips at the bottom of the page
Jennifer
Thanks for sharing your story. I think it’s wonderful that you do not let diabetes affect the way you live. Your strength is incredibly inspirational. Looking forward to your future posts 🙂
Christel Oerum
Thank you 🙂
Lucinda
Good work! I have been Type 1 since I was 11years old; I am now 68 and after 57 years I still have no complications. I attribute my being “complication free” to exercising on a regular schedule. I have exercised all my life and continue to do so now. Of course measuring blood sugar, watching foods, etc is important too. I have always said if I had to have any disease I am glad it was diabetes as I can control it, it doesn’t control me.
Christel Oerum
Thank you Lucinda. 57 years of diabetes and no complications, that’s not only impressive but also encouraging.
Keep at it!
Tove Maren
Impressive journey, Christel! I am so glad I found you guys! I look forward to following your posts and I will share with my readers as well. You are a real inspiration! That Viking blood runs thick! 😉
Christel Oerum
Thank you Tove. I really appreciate you sharing this. Please let your readers know that they can alwyas reach out to us if they need any advice on diabetes, diet or training
Jus
What an incredible journey for you! We know two people who both are Type 1 and they are both managing it will with the use of insulin pumps. I can only imagine how scary it is to have something so shocking manifest as a young adult, but you’ve done such a great job educating yourself and those around you, including me!
Jeanne Melanson
Thank you for sharing your story with us. I am sure it will help a lot of people, perhaps especially those who have been recently diagnosed and are wondering what to do now. It’s great that you had family support and good medical attention. Turning it into a fitness lifestyle says a lot about you and your strength. I look forward to reading more of your posts in the future. Peace.
Stephanie Keeping
My cousin needs to read this. She just told me this Christmas that she was diagnosis Diabetic. She’s younger than me so it’s going to require lots of changes.
Christel Oerum
Please let her know that she can reach out to us at any time if she has questions, either here or on Facebook. We would love to help her in any way we can
sarah
Kudos to you for figuring out what was making you feel so lethargic and making a lifestyle change! My grandfather was diabetic and was fit just like you. These are great tips for anyone that is struggling with diabetes or knows someone.
Jenn
My youngest daughter was diagnosed at age 11 with type 2 diabetes and we’ve done well controling it with diet and exercise but she has autism, so the emotional behaviors can interfere with my best intentions for her diet.
Christel Oerum
You must be a superwoman to handle all that! Let us know if there is anything we can do to help. I am so grateful that I didn’t get it until after high school, so I was old enough to mostly deal with it on my own.
Salma
Thank you so much for sharing your story, I found it very interesting and inspiring. I look forward to reading more of your posts.
Christel Oerum
Thank you! I look forward to writing a lot more 🙂
Sue
Thank you for this inspirational article. I was diagnosed as a Type 1 when I was 34. I had Drs. later that said no way could I be a Type 1. Finally an endocrinologist ordered the proper test and sure enough I am Type 1 as originally diagnosed. I am now 71 and some of the effects are starting to show up such as retinopathy for which I will be receiving laser treatment.
I have had various exercise programs and trainers over the years. I made an effort to go it alone with exercise and ended up injuring my back. I have found it impossible to find a trainer for an older woman with Type 1.
Christel Oerum
Sue – thanks for the kind feedback.
I’m impressed with your effort to stick with your exercise regime! Agreed that it might be a challenge to find a trainer specialized in both back injuries and diabetes. Have you tried asking your HCP for a recommendation?