This October is my 15th year anniversary of being diagnosed with type 1 diabetes at just 8 years old. Back then, it didn’t really quite phase me… I struggled with denial through my teenage years but I overcame it. Today, at 23 years old, after achieving a couple of years of “below 7” A1Cs and never suffering from any complications (knock on wood)… I am struggling.
I am struggling with the fact that this “disease” will last forever. The fact that my hard work doesn’t have an end to it. The fact that I have to accept failure if a number is not what I want it to be. I wish I didn’t have to think about what I eat, how much I eat, when I eat, and where I eat…I wish I didn’t have to think about my site bothering me, about whether the next insertion of a site will hurt or not, or if my insulin resevoir is running low… I wish I didn’t have to check my sugar 8 - 10 times a day (secret to keeping a low A1C). I wish I didn’t have to listen to people giving me “advice” on Type 1 Diabetes. Or confusing it with Type 2. Or “that’s the bad one right?” questions.
I thought I had gotten over the denial phase but I feel like these past few days of October…I’ve just been BLUE. I don’t want to know anything about diabetes. I don’t want to work for it. I don’t want to work on it. I don’t want to have it.
Has anybody else that’s had the disease for this long or longer ever feel this way? How do you just switch off the Blues and get back to your normal routine?
I was diagnosed at age 9 and just passed my 24th anniversary in early October. I have a theory that for those of us diagnosed as kids, the whole process of acceptance is delayed. I think I was 22 or 23 as well when I went from not really thinking about diabetes much to feeling very much like you do—realizing that I’d have to do this forever, and I was suddenly sad, angry, frustrated, and worried about how I could possibly continue doing this for the rest of my life with no end in sight, as well as wondering how healthy I’d really be when I retired at, say, age 65 after having had diabetes for over half a decade.
It wasn’t something that passed quickly. It took a few years to work through, but now, about 10 years later, I feel like I’ve finally come to a place where diabetes fits comfortably into my life. It’s still hard, and at times frustrating, but it doesn’t have the emotional weight that it did in my early 20s.
This is probably not all that helpful, as I don’t really have any advice to offer, but I just wanted to let you know that I’ve been in a similar situation and think that it’s probably pretty normal.
You feelings are important. They need to be respected. What is it you are feeling? You want to forget about diabetes. I think you beginning this conversation is what you needed. Perhaps it is a perception you have that others are different, others do forget diabetes because they don’t have diabetes and you want to understand their experience. I think that is admirable. But when we get older we accept our uniqueness.
That’s a brilliant theory @Jen! I’m not quite in the same boat as I was a bit older, 16, when I was dx’ed. I have always distracted myself with hobbies, including some less-than-savory ones. If we’re having a wild party, I want to keep my BG in line. Now, it’s more trying to fit workouts into my schedule “I have to run today so I can’t have jacked up BG”. There’s not much I can do about it so…
I was seven years older than you are now when I received my T1D diagnosis. Like Jen said, childhood diagnosis can delay acceptance. But I think some of the territory that we cover emotionally is similar across all ages.
After my diagnosis I wanted to learn just enough so that the maintenance activities were limited enough that I could focus on and enjoy the other parts of my life. This tension between diabetes activities and “real life” is something that we all feel.
I’ve had a major breakthrough in my diabetes treatment and emotional life when I retired and decided to give diabetes all the time it required. I always felt like that was bottomless pit of insatiable demand. But I discovered that diabetes demand on my time and attention was not infinite. I made some significant discoveries about limiting carbs, daily exercise, and watching my CGM that permitted me to really rein in decades-long BG rollercoasters. It took me 28 years but I figured it out!
Now, instead of eating up way too much time, my diabetes needs seem reasonable and tolerant. I helps a whole lot now that I can play this game of diabetes more often as a winner than loser. Humans lose interest in activities that they’re not good at. It’s simple human nature. Since I couldn’t ever shake diabetes, I decided that I would be good at it. It’s a whole lot more fun that way. And way less dramatic.
I caution you not to turn your back on diabetes. It’s a mean adversary that will create much more trouble and care than you are experiencing now. Diabetes can wreak havoc and make your life a lot worse. I’m a firm believer in the old adage: hold your friends close and your enemies closer.
In short, I’ve discovered that diabetes can be tamed and reduced to a relatively small part of your life. It requires that you get good at it. It’s a paradox: pay attention more so you can pay attention less.
Sorry if you see these as the ramblings of an old guy but I feel better now about my diabetes than I ever have. I wish you well. You have your whole life ahead of you!
Hi Jen! WOW, 24 years…and here I am thinking 15 is a lot. Thank you so much for your reply. It certainly is helpful. I’ve stayed away from the group for a little while but I’ve found that speaking to those close to me, I get more frustrated because I don’t think they truly understand my feelings. I have to say that just as Diabetes is a rollercoaster… I think the whole process of “acceptance” is too. I really thought I had accepted it years ago and I suppose that realizing that this is FOREVER changed it all for me, again.
Hi John! I have some goals but in those diabetes is also included I feel like I’ve allowed it to take over my life in the sense that I measure EVERYTHING by numbers…so much so that I graduated with an accounting degree and I tutor kids for math…
Skydiving shall be next… instead of a 5.8 A1C, lol.
That’s so funny, numbers. Can’t relate much. When I had diabetes for 15 years it was 1990. I took two shots per day of Regular and NPH insulin. I had stopped testing my blood. Memory is foggy, wasn’t seeing a doctor, was back in school for a degree in engineering. The expense of testing? The inadequacy of infrequent tests? Expectations that little could be expected in diabetic therapy? The lack of any support for diabetic therapy? No diabetic type one friends? I’ve heard others say numbers become a dominate characteristic of life with diabetes. I just don’t get it. The first five, six years there were no numbers at all regarding diabetes. When the first home blood test was available my doctor imported from England the device for me that gave a number. He said it was so much better than comparing a reactive strip to colors. A1cs were never part of my life. My doctor today says he all ways asks about severe lows first because there’s a good 8.2, with no severe lows and a bad 8.2, with severe lows.
I feel like I’ve allowed it to take over my life in the sense that I measure EVERYTHING by numbers…so much so that I graduated with an accounting degree and I tutor kids for math…