Today marks twenty years of living with type 1 diabetes. The first thing that comes to mind when I write that is “Goddammit.”

But that’s not particularly profound or eloquent, so I’ll try to come up with something a little bit more worthy of the occasion.

On Friday, I flew from Minneapolis to New York and on the first leg of my flight I had the chance to chat with the woman next to me. I had tested my blood sugar, so the woman asked if I had diabetes. When I said yes, she asked if I was okay, and I said that I wasn’t doing great but was fine. She wanted to know if I needed juice and I said that I was actually in the other direction and so what I really needed was a Diet Coke, which I got from the flight attendant.

The woman then volunteered that her friend’s daughter had type 1 diabetes too, and so we spent a good long while talking about it. I told her that I’d had diabetes for almost twenty years, since I was 8.

“You probably get pretty used to it after awhile, right?” she said.

It’s an interesting question and something that I probably would have had a different answer at another time. Just like the way an elementary school student looks at a high schooler, at one point I probably thought people who had lived with diabetes for 20 or 30 years had had diabetes for a long time. Now that I’m at year 20, I’m now realizing how paltry that amount of time really is. I know so many people who have lived with diabetes for forty, fifty and even sixty years. I even met the man who’d had diabetes the longest, before he sadly passed away a couple years ago. There are so many life experiences that I haven’t lived through with diabetes — like pregnancy and parenting — that twenty years just doesn’t seem very long at all. Just like my own age, 28, can seem like a long time and not a long time, depending on your perspective.

Of course, I’ve always felt badly when newly diagnosed people occasionally quip, “Well, I’m not a veteran because I’ve only had diabetes for a couple of years.” Honestly, I think people are veterans after a couple of hours with diabetes! This shit’s hard and it breaks you in real fast.

I think at various points in my life I have felt like a newly diagnosed PWD, and not just at diagnosis. Going on an insulin pump six years after diagnosis was almost like starting over again. Leaving for college felt like a new beginning in both the good and the bad sense, because I had not a clue what it really meant to take care of my diabetes. And I’m readily aware that I’m about to fall flat on my face again when I become a parent. Children change everything, or so they tell me.

But the woman on the plane could have meant more than just head knowledge about living with diabetes. There’s also a certain smoothness that I feel people without diabetes expect to exist. Like we just know what to do and nothing really bothers us. And in some ways that’s true. I don’t wince at pricking my finger, but I always wince at a 275 mg/dl. I don’t forget to count carbohydrates or take insulin, but I resent having to do it and I sometimes even willfully wing it just to avoid the obstacle.

I wish I could say that living with diabetes has gotten easier after twenty years. It’s still as annoying, uncomfortable, frustrating, demanding and confusing as it ever was. I feel a little bit guilty for saying that like I should have figured it out by now because dear God, what exactly have I been doing for these past 20 years? But I think part of that is so much of those years were spent almost in another world. My childhood diabetes was different than my college diabetes which is different than my adult diabetes. So really I feel like maybe I haven’t had diabetes for more than a few years because the way I’m managing it now and the people I’m managing it with are new.

Part of the problem is that diabetes does keep changing. Everything about it changes. From how your blood sugars respond on a day to day basis, to how you manage your diabetes with the new technology and the information overload they can provide you, to the changing challenges of your various life phases, from parents and teachers to spouses and children. Change is a huge cause for stress in people’s lives, and it’s no wonder we have such a difficult time coping.

I remember when I hit my ten year diaversary vividly. I was a freshman in college and I remember that it was the first time it really struck me that I would have diabetes forever. I don’t know why it took until year 10 to fully realize this, but it hit me like a ton of bricks and I felt very depressed about my diabetes for a long time. I think that I had expected diabetes to get easier, to feel better about having it, and the truth is that I didn’t then and I don’t now. I’m not afraid to say this out loud. Maybe I’m the only one who thinks this way, but I have a feeling that I’m anything but.

I think there are far more important questions to ask than my level of comfort with diabetes. Diabetes isn’t comfortable or normal, so no, I don’t think there’s ever a sense of getting used to it. I don’t think it’s possible, and I think having that expectation might actually lead to even more anger and frustration when that ease never materializes. I used to think I had to be very “happy happy, joy joy” about gaining years with diabetes. Like everything would just get better one day. I was enthusiastic that life did get better and that diabetes did eventually become just like brushing your teeth. And maybe that’s how it is for some people. But it isn’t for me.

I imagine it’s like any trauma that happens in life. Maybe on the surface you get used to it. You stop complaining about it as often. The future with it becomes less hazy. Even certain aspects of it become rote and second-nature. But you still catch yourself thinking about the life before or the life of someone else. A slight bitterness has crept into your life, just a little bit, and though you keep it at bay with distractions and mantras and a good strong cup of coffee, on your weaker days the bitterness can feel a little threatening.

I am — or at least, try to be — a positive person with diabetes. And that’s because I have found that there is a litany of questions to which the answer is a resounding Yes. There are so many things that we can do as people with diabetes. In the past twenty years, there is not a single life event that I believe I missed out on because of my diabetes. I don’t foresee missing any life event in the future, either. Anything that I have wanted to do, I have found a way to do and that’s what I told this woman on the plane. It might take a little bit more time, a little more work, but any dream you can dream, you can find a way to do.

I might not be used to diabetes, but I’m certainly used to kicking ass and living life.

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7 Responses to Twenty

  1. Happy diaversary, Allison. And here’s to 20 additional ones, and many more on top of that! Very good post, and I completely agree that it’s all relative and a matter of perspective. Glad you made the trip OK, and the drive too! Looking forward to hearing how MN and school treats you out there!

  2. Katie says:

    Congrast! I too also pause when asked, “so you must be used to it now”. I think the real question they are asking is, “so you must not have to think about it anymore”. My typical response is usually something along the lines of, “even though I’ve had diabetes for xx years, it is still something that requires my full attention everyday.”

  3. Congrats on reaching your 20th diaversary! BTW, I was also 8 when I was diagnosed (although, I’ve “only” had it for 12 years)

  4. Happy Diaversary!! :-D Great post to celebrate life and kicking ass! <3 Hugs!

  5. Laddie says:

    Happy Diaversary, Allison. Sometimes I think it’s pitiful that we get used to all the BG tests, injections, bionic tech devices, etc. But we all know that those are the easy things and the harder things are emotional or even just figuring out diabetes for 1 day or 1 hour or 1 minute. It’s just hard.

    But cheers for this twenty years and the next twenty and the next twenty and the next twenty.

  6. Scott E says:

    Great post Allison, and congrats on your 20th!

    You know, as I read this, I kept thinking of how, in my 32+ years, I suppose that I’ve gotten “used to it” in a sense — but the rules keep changing, just to keep me on my toes. New insulin changed things; DCCT changed things; new ways to measure glucose levels changed things; pumps and CGMs changed things; scar-tissue changed things; raising a family changed things. My own motivation and desire to manage this thing changed. I guess constant change is what keeps us aware and on our toes.

  7. Pingback: We’re Here! | With Faith & Grace

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