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.
I think I was lucky 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 got in 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 they 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 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 how 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 groups where you can ask questions and get support (like Diabetes Strong’s Facebook group)
Rosemary Hellwig
Great read, Christel. I kept going, “just like me”… I was 19, first year of college, gained 20 pounds right away, etc… I just went to my GP, but, my mom worked hard to learn all she could to help me out. At 64 I still walk 2.5 miles everyday & grateful to have 5 grandbabies in our tribe ;o). Thank you for starting Diabetes Strong, I am new here. Type 1 community is essential!! When I was diagnosed, I only knew of 2 D1’s. One that was blind at 30, and another, young adult boy who had just died. Life IS good!!!
Christel Oerum
Life is indeed good! Sounds like you’re living it to the fullest
lori
Thanks for all your diagnosis stories. It does my heart good to hear that “newly” diabetics are treated well. Being diagnosed 10 days after my first birthday in 1960, was totally different. The dr told my mom not to worry about it, try to do her best controlling my blood sugar levels, (not easy with the only tool being strips I had to pee on) but just let me “be a kid”. No one thought I’d live, go to college, have a career, get married or have kids. Mom did make me exercise every day when I got older, and I think that’s what helped me stay out of the hospital with high ketones. Now with a pump and cgm, I’ve retired, still married and enjoying my first grandchild. Really living my best life. You all go! You can do it.
Dawn
Thank you for sharing your story! I can not believe how similar our stories are! I was also diagnosed at 19 and ended many days with ice cream! When my GP called me, also on a Friday, and told me not to worry, I was probably just stressed from University! I had gone in saying that I thought I had diabetes. Of course on Monday, the results came back and I immediately was sent to the hospital, but not before I polished off what would be my last full tub of ice cream! 🙂
After 2 weeks in the hospital, I went to California to stay with family and chill. I came home pudgy as I also had eaten like 2 grown men! I have been working out since that time, (off and on for a bit) and at 56, feel better and stronger then I have in a very long time. I have had a trainer for the past 3 years and although it is not cheap, I look at it is this way, pay now or pay later.
I am very happy that I found this group and I look forward to your posts and the comments from the whole group!
Christel Oerum
Hi Dawn – so glad you found us too!
I do miss the unlimited ice cream without consequences, but definitely not the falling asleep all the time.
And I completely agree exercising is an investment + I really enjoy it.
Thanks
Ron
Thanks for your story Christel.
I was originally diagnosed as a type 2 just before I turned 50 so about 18-19 years ago. Finally saw another endo early last year as nothing seemed to be working for me and at the end of our discussion he told me I was a clinical type 1 all along. I also was never over weight and was fairly active most of my life having done some long distance running to include a marathon and many other runs generally in the 10km distance range. He told me to get on a pump as soon as possible. That happened in June last year. I started using my Dex G5 in Mar last year, three months prior. So in the last 15 months I have gotten better control of my diabetes thanks to my Animas Vibe and G5 CGM.
I exercise with a combination of road cycling, some mountain biking and recently added resistance training.
All of this has maintained my insulin sensitivity and because of that I am on a rather low dose insulin regime…about 10-12 units daily.
I certainly do not have all the answers but it is with groups such as your Christel, that I hope to become better educated.
A little further background. I am a 20 year USAF Vietnam Veteran who was born in Chicago and now reside in Bundaberg, Qld Australia. My wife Sandy and I have one son and he will be 44 in June. Ciao.
Christel Oerum
Wow, that’s an amazing life and diagnosis story, thanks for sharing. The number of people who gets misdiagnosed continues to blow my mind. I’m glad you find the site helpful, I completely agree that the more we know the stronger of a position we put ourselves in.
Thanks for your service – Christel
Ron
Thank you Christel. Looking forward to this May challenge.
Caitlin
I was just diagnosed with type 1 diabetes and I just turned 19 April 4th and was just diagnosed last Friday on the 7th I’ve never related to such a blog post in my life. I have felt so stressed the past week and the anxiety of not knowing because my whole life has changed. Thank you for writing this I’m going through this right now and it’s traumatizing.
Christel Oerum
Caitlin, I’m so incredibly happy you found my story and can relate. A diabetes diagnosis can be scary and starting out “right” can make such a difference. I truly believe it doesn’t have to stop you from living the life you dream of and I try my best to prove that by “walking the talk”. I hope you will continue to find support through my site and you are always welcome to shoot me a note through the contact form.
C
Rosemary Hellwig
I remember that trauma, Caitlin. You’ve got this!!
Karli
I was just diagnosed at about 4 weeks ago and I am 20 years old. I am doing really well, but still struggling with rapid drops because I am still producing insulin. I love to workout and it has been frustrating because I drop after a 15 min walk! I am also traveling to Haiti in may for 3 weeks and wanted to know if you had any advice.
Christel Oerum
Hi Karli,
It takes some time to figure out how your body reacts to various types of activities, but there are some general guidelines that can help you. I would suggest you start by reading these two posts:
1. Cardio and blood sugar – https://diabetesstrong.com/how-to-prevent-low-blood-sugar-during-cardio-workouts/
2. Resistance training and blood sugar – https://diabetesstrong.com/how-resistance-training-affects-your-blood-sugar/
Maryann
Thank you ! I was also 19and diagnosed on Friday. That was a long weekend:-). I spent twenty years gaining weight and eating my way out of hypos , then I stopped . Found a new Endo, joined. Gym, got a pump , list fifty pounds and never looked back .
Christel Oerum
That’s awesome, way to pull yourself out of a bad habit pattern! Way to go
J.R.
Thank you for a great story & new motivation to re-focus on what I need to do! I have gotten a little lazy until I read this. I have figured I was good to go since I’m still playing soccer full speed at 42. Complacency is not our friend! I have also met with a new Endo & am glad to have finally found a really good one!! We discussed many areas and she is having me back in for more training a check on updated blood sugars. She was pleased to see I’ve had no complications, although being diagnosed 30+ years ago. I am too!!
Thank you again!!
Christel Oerum
Hi J.R.,
Thank you so much! You just made my day 🙂
Good job on taking care of yourself and welcome back to the intensified training arena. I”m sure you’ll do great
Harry R
Great read and thank you. I was diagnosed at age 23 with diabetes in 1975. Since then they have made so many advances that have been really great, including the insulin pump. I started playing soccer at age 30 and am still doing that at 63. I can still play the entire game and usually do, especially at season’s end, since people drop out for injuries and such.
I could use some hints in increasing speed though. Never thought that I’d be looking to increase speed at 63, but here I am. I truly believe that with luck (minimal complications) and good care, diabetes is workable. Admittedly I don’t go strictly with care, but I do keep it close and with weights and running, I keep in pretty good condition. It can be done if you want to most of the time. I have been very lucky too, since I don’t have alot of complications after 40 years of diabetes. I’ve lost friends to it also, so I am very lucky. I don’t miss work for being sick, just for days off, vacations, or routine doctor appts. Very lucky.
Christel Oerum
Harry – Good job on keeping active!
It’s never too late, to improve, so go for it. I would recommend interval training in order to increase your speed. I had a coach use suicide sprints before to get me up in speed, it worked.
Good luck and thanks for the positive feedback
Katherine
Great read and great inspiration. I was diagnosed at age 23 with a case of DKA. My A1C was almost 18! I had symptoms for months but convinced myself I was just hungover or tired from a long week. I lost 40 pounds but ate more junk than ever! Then after using insulin, gained it back and more. I really have become a little obsessed with food because there were so many things to remember when first getting used to my diabetes. Now, at 24 I am completely used to it and am beginning my “fit” journey. Sure, it is different one than a person who doesn’t have diabetes, but no ones story is ever the same anyway.
It is a bit frustrating when people think I got diabetes because I was eating so terribly. I try to explain it was BECAUSE I unknowingnly had untreated diabetes that I was craving so much food! Also, no one in my family has diabetes. Either type… Which is odd! Must be down the line somewhere 🙂
THANKS for sharing.