Different, Not Easy

The other day I posted a message on Facebook that was a little bit misunderstood, so I decided to take it down and make it a blog post instead. Hopefully the expanded words will make it a little clearer what I meant.

What I had posted was something to the effect of this:

One of the hardest things about meeting a newly diagnosed family is the heartbreaking optimism that things will get easier. It never gets easier. It gets different, but it doesn’t get easier.

Now, my interpretation of the comments is that this came across way more depressing and hopeless than I had intended to convey. I don’t think life is hopeless and I don’t think life with diabetes is an endless slog of misery.

What I actually meant when I said “it never gets easier” is that I don’t think managing blood sugars ever becomes simple. So maybe that’s the word I should have used instead of easy. Simple conveys a sense of thoughtlessness that I don’t think you can ever attribute to diabetes. Managing diabetes for some people might involve periods of time of “going through the motions” and that’s fine, but really good diabetes management, I think, requires a lot of deft and flexibility. And that only comes from constant vigilance, interpretation, action and evaluation, all which are not easy.

Over the past few months, I’ve occasionally heard someone (usually a newly diagnosed parent) share that it seems they had just figured out the [enter diabetes management tool or technique here] and now all of a sudden, blood sugars are mysteriously high. And I have to bite my tongue sometimes because it feels like the logical answer would be “Well, of course it changed. It’s diabetes.”

Earlier this week, after I had gone on a run that had required a careful balance of a pre-run snack and a temp basal, I tested my blood sugar and was pleased with a 158 mg/dl. And I thought to myself how long I had been running and yet how every run that didn’t end in a high or low blood sugar was a major accomplishment. I’ve had diabetes for 21 years and yet I still find myself pleasantly surprised (or, conversely, deeply horrified) with so many of my blood sugars.

And it’s not that living with diabetes itself is always hard. After so many years of unpredictability, you can almost train yourself to be comfortable with those unpredictabilities. Not always, but you can try. But the expectations of chaos doesn’t mean the diabetes easy. It just means you’ve trained yourself not to fall into self-blame or self-judgment when they happen.

Another thing that can make diabetes easier is our own life transitions. What was once difficult for me is now easier because I’ve lived through it and it’s no longer an obstacle. Dating with diabetes used to be hard. Now I’m married. Standing up for myself and explaining diabetes used to be hard. But now I’ve done it many times and I’ve learned to advocate for myself. It’s not entirely enjoyable, but it’s not difficult.

But the diabetes management? It’s still really hard sometimes. I still haven’t figured out a predictable way of managing my blood sugars during PMS or while exercising. Sometimes what worked last time works again, but a lot of times it doesn’t. My days are never the same, and therefore my blood sugars are never the same. I don’t think diabetes is impossible and I don’t live dreading each day.

I’m two decades into living with diabetes and I’m no closer to having this thing “figured out.” It takes a lot of work, every day. It changes constantly. I’ve never felt “done” with my diabetes. Even though I know and understand the major influences of my blood sugar, I still find myself with highs and lows when I’m not expecting them. That’s what I mean by “it never gets easy.” It changes. It’ll get different. The things you find difficult today may not be the same things that you find difficult tomorrow, or next week or next year. And I feel badly for people who think that it does become easier.

I did like what Scott Benner commented on Facebook, before I deleted my post. He said, “It doesn’t gets easier, you just get better at it.” I think there’s a lot of truth to that, but I would add that what you get better at is dealing with the fact that it’s not easy. I think a lot of us get used to it being hard. We learn to expect it and it doesn’t throw us for a loop or under the bus when it happens. Sometimes that understanding doesn’t last forever. We go through periods where we can’t cope with constancy of diabetes and we burn out. Diabetes ebbs and flows differently for people.

It certainly isn’t my intention to bum people out or fill our space with negativity. Saying diabetes never gets easy probably sounds pretty bleak, but I personally think that truth and realism is more important than false expectations.

I have been reading a little bit about grief lately, and from what I understand, there might be some similarities between grief and diabetes management. Grief for someone that you love never goes away. It’s ever-present, but you learn to live your life in spite of the loss, or maybe because of your love. With diabetes, I see it being similar in that even though it’s hard — and it never stops being hard — you learn to live with the difficulty, you learn to live in the difficult, and you learn to live through the difficulty.

You learn to live differently, proudly, fiercely. And I can’t think of anything more hopeful than that.

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4 Responses to Different, Not Easy

  1. Kathy says:

    It’s a matter of having realistic, pragmatic expectations I think, and only time gives you perspective. For kids diagnosed today it is already far ‘easier’ than it was for those of us dx’d 20-30+ years ago. But it’s still a matter of replacing insulin and balancing a metabolic process that was never in human history managed outside of the body. It’s only natural to cling to hope when it all seems so new and scary – it gets better, but I agree it never goes away.

  2. Ally says:

    This is a poignant, brave post. I can’t say much else because you’ve already articulated it all quite clearly here. But I do want to say thanks for writing this.

  3. Brian says:

    I started to read your blog’s some years ago, followed you on Twitter even chatted about our experiences running, I always found you told it how it is and respect you for that.
    I’ve been T1DP since the age of 10 that’s coming up to 45 years T1.
    My experience maybe not the normal but I found the lack of honesty regard to the seriousness of T1 is a major obstacle when connecting with parents, brothers sisters family and other people, of course parents want to help fix the problem but that’s the issue there’s no cure only management with pumps cgms that’s got a lot better but still its extremely hard being 24/7.
    I don’t want to scare or give there’s no hope, but being a T1DP is a special way of life that other members of the family have to understand weather that’s scary or not since its there life.
    Not enough information or understanding of T1 from governments, people and especially employers makes T1DP life extremely differcult.
    Putting that to a side myself have no complications I’m fit enjoying life run 10ks and hoping to achieve a marathon my close family wife and 2 daughters support me with understanding the rest of my family abandoned me years ago.
    So to sum up I would sit any parents and DX T1 the truth in the long run the sooner you accept the seriousness of being a T1 the longer and happier if that’s the right word will be

  4. Great post Allison. After 40 years with D, it’s still not simple/easy/predictable.

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