It’s only diabetes

The big news lately surrounds the announcement over the DRI’s “BioHub” and the social-media teaser that preceded it. You can read my thoughts on that series of events in a comment I left on the DiabetesDad blog. But this post is not directed at the DRI; it’s to the folks who feel they absolutely cannot wait for the true announcement that still seems just out of reach. Give it a read, and I’d love to hear your thoughts on the topic.


As I surf the various online diabetes-related forums, whether it’s on JDCA’s Facebook page, JDRF’s LinkedIn group, or DiabetesDad’s blog, nothing distresses me more than the comments by forlorn parents and grandparents of children with diabetes. Usually, those comments read like a variation of the following: My beautiful Cameron* was devastated with the diagnosis of Type 1 two long months ago, and we desperately need a cure!! It kills me to watch my child suffer an eternity of painful injections, dietary restrictions, and being socially ostracized.  I mourn the loss of Cameron’s childhood every day!!

These kind of comments make me sick. Not because it’s unfortunate for anybody to be diagnosed with diabetes, but because the parents seem to believe there’s no hope for them to live a happy life. These comments are filled with sorrow and despair, and they suggest that the child is doomed to live a miserable life.  This message is for those parents:

DON’T FEEL HOPELESS! A GOOD LIFE DOESN’T END AT DIAGNOSIS!!

Your child’s pancreas stopped making its own insulin. But we can get more for you – out of tiny glass bottles. The tools that help us to do that are better than ever. Yes, it’s going to be a chore, at times an unpleasant one. Yes, it can be rough. But it is, by no means, hopeless. Diagnosis is not a death sentence. It’s only diabetes.

(I am not trying to discredit any of the difficult thoughts you may be feeling. I can only imagine what you must be feeling. But as a diabetes veteran, let me reassure you: it’s not that bad.)

Diabetes isn’t the end of life. It’s not even the end of hope for a “normal” life. Life is what you and your child make of it, and life can be good. Life can be happy. But if you don’t believe this – or even pretend to believe this – then neither will your child.

These types of thoughts destroy morale. They serve to de-motivate those who speak, write, and think them. They de-motivate those who hear, read, and subliminally sense them. Please. Don’t set your expectations short. Don’t give up hope.

You can do this. Your CHILD can do this. They just need to believe it. They need to learn it. They need the confidence to do it.

Don’t put all your hopes into a cure. It would certainly be nice, but it’s not a prerequisite to happiness.

I just celebrated my 39th birthday. For the latter 32 of those, the negotiations surrounding birthday cake were more complex than for the first seven. But like the earlier ones, in every one of those birthday photographs for the past thirty-two years, I am smiling.

Look around the Diabetes Online Community. Check out the profile pictures and the vlogs. People are smiling everywhere. (Yes, Kerri generally talks so quickly and enthusiastically that she rarely has time to smile, and Sara likes to make funny faces for the camera, but you get my point).

Life can be happy. Life can be fun. Life — even life with Type 1 diabetes — is worth living!

I look at my own life, and I feel I’ve got it pretty good. I’ve got a nice house in the ‘burbs that I share with my beautiful wife and two wonderful kids. It’s a dream-come-true.

I’m a stronger person because of my diabetes. Smarter, too. Motivated. Confident. It didn’t happen all at once; there’s a big learning curve, and I’m still gaining confidence and motivation every day, but it does happen.

Having said all of this, I know tragedies happen, too. In fact, in the midst of preparing this post, I read such a story which almost made me reconsider writing this at all. It was awful; one of those stories of a child with diabetes that ends prematurely. It can happen to adults, too. I won’t hide my head in the sand and pretend that it doesn’t.

But especially today, those are – by far – the exception rather than the rule. The tools we have today are vastly superior to what we had when I was diagnosed. People with diabetes in the 2010s live much healthier and less-restrictive lives than they did when I was diagnosed in the 1980s.

I’m still smiling.

Sure, a cure would make my smile a little wider. I might even do a little dance. But I won’t sit around, helpless and hopeless, waiting for it. My time is too valuable to waste. I’ve got a life to live, and I intend to live it. Everyone with diabetes has a life to live, and every one of them should be living it.

So please, try to improve your outlook. The doom-and-gloom attitude is toxic – not only to yourself and your child, but to others who witness it. How do you think your newly-diagnosed son would feel if he saw you grieving for him. He’s still alive!

Go ahead and reach for the holy grail. Buy your lottery tickets from DRI or the Faustman Lab. It’s good to dream big; we need people to believe in a cure in order for it to happen. Don’t put all your hopes on it, though

Believe in a happy life with diabetes. You need to believe in that, too, in order for it to happen.

I know that it can. After all these years, I’m still smiling.
image


* The name Cameron was chosen, completely arbitrarily, by me for the purpose of this post. Any similarity to a real child of this name with diabetes, boy or girl, is purely coincidental.

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Posted on March 6, 2013, in Cure, Diabetes, Inspiration, Personal, Type 1. Bookmark the permalink. 18 Comments.

  1. This is fantastic.

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  2. Amen! I was a child with an early T1 diagnosis. Yes, my parents probably felt the same way at some point, but their hard work made me become the healthy T1 adult that I am now. (With few complications.) I worry about the “mourning parents” and wonder if their eventual denial that this could ever happen to their child will ultimately lead to more complications later. Parents will do everyone a favor if they just grab the bull by the horns and push forward.

    – Jen (T1D Ballroom Dancer)

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  3. Yes! Yes! Yes! I can’t imagine what my parents went through with my diagnosis, and I honestly don’t know how I would respond if my son were diagnosed, but I do know the last thing we diabetics need are hopeless images put before us. And WE are living proof it’s not hopeless, not by a long shot :)

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  4. You just talked about the thing that was kind of upsetting me the most. The reactions from the parents etc who “desperately” NEEDED a cure.
    hmm… I’m really glad you brought this up because I felt like nobody was seeing that.

    That’s such a cute picture!
    I love your outlook on this and it seems you struck a chord with your comment because everybody was talking about it. thanks.

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  5. Indeed, I think how parents talk about their child’s diagnosis says a lot about how the child is likely to view it, too, although there’s no certainty of that. But more to the point, I think the fact that JDRF now acknowledges that adults with type 1 diabetes constitute a significant portion of whom that organization represents (indeed, JDRF now has a page dedicated to adults with type 1 at http://jdrf.org/life-with-t1d/adult-t1d/ ) speaks volumes about how life with a chronic disease of any type has changed in the past 50 years. People can debate about how effective such pleas actually are (JDRF doesn’t really mind as long as the money continues to flow in), but your points are well made. Personally, I’m going on 37 years of living with type 1 and I’m doing pretty well. I also have a friend whom I met online who has lived with type 1 for something like 60 years. He’s one of the smartest people around, and he doesn’t claim he “desperately needs a cure”, although like most of us, I think he’d prefer it. In the end, I think the descriptions we use can influence our children’s outlook. Parents should consider that.

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  6. I’m glad you said this! Since I’m a mean person, I totally just rolled my eyes at all those comments. You’re right, we shouldn’t discredit them, but I do think a little perspective is helpful. And you give it here, in such an eloquent way.

    We’re all (pretty much) fine!

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  7. “an eternity of painful injections, dietary restrictions, and being socially ostracized.”

    Sometimes when I see parents talking about diabetes I wonder if we’re talking about the same disease. I know your message was made up, but it is definitely an example of the things I hear too and I just wonder where they are getting all this horrible information. I have found that your attitude toward a life with diabetes is directly related to how well you manage it. A negative attitude will only give you negative results in many areas of your life. A positive attitude will lead to positive results.

    I also like the saying “Life is 10% what happens to you and 90% how you respond.” Diabetes is part of the 10% that you can control. But don’t let it get any farther and ruin your confidence, dreams, desires, aspirations. Don’t give diabetes any more credit than it deserves.

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  8. Yes and Yes this is such a great post :-)

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  9. I started to respond here, but it got a bit too long for a comment — so it’s on my blog.

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  10. Love this post, Scott. Thank you.

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  11. Thanks for this insight, we are 7 months into our Diabetes journey with our 4 year old. It’s difficult but we are managing pretty well. And she is a Rock Star! Thanks for letting us know that life is just fine even with Diabetes. :)

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    • Glad to hear that she’s handling so well, and that you are too. It’s a tough start for sure, but when you start picking up on patterns and they start making sense, it can be empowering – a real confidence-booster! It all starts with a good attitude. Best of luck to you and your daughter!

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  12. I love when blog posts take words out of my mouth. I have one like this drafted, but always feared posting it since I am not a parent. I fear that people would judge me not knowing what another parent might be feeling. As always, Scott, you did great :)

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  13. Iam a Single Mom of a T1D son who was diagnosed almost a year ago now. My son is 10 and is now dealing with his T1D pretty well. Sure he has his bad days, but like I tell him, but honey, we all have bad days, even if you weren’t T1D, you would still have a bad day from time to time. We are hitting his 1 year mark on March 21st and what a ride this year has been. I was petrified, I really didn’t know what “diabetes” was, I knew of it, just didn’t understand it. The first day with the ENDO, I asked him point blank (my son was in the waiting room with a friend) is my son going to die? He said “No”, he will live a long healthy life, you will just now be his pancreas. Once I heard those words, he was not going to die, I knew anything else we had to deal with was do-able. Dont get me wrong, its been a roller coaster of fear, especially at night. However, his “D” team was adament that NOTHING in his life was to change. That meant, if we ate Mc Donalds on Thursdays after soccer practice, then we continue to do that. They were adament that just 3 days after diagnosis my son was to go to his Soccer game? Are you kidding? No way, I thought. Yes, he goes to soccer, his life continues and you manage his diabetes. I must have looked like a crazed woman on that 1st soccer game, but you know what? He played, he scored, he had fun, he was fine. Life continues one day at a time for us. I keep my fears hidden and keep him focused on life. It feels like doom and gloom sometimes and I think when you hear parents vent about those doom and gloom fears, its their way of reaching out to hear someone tell them, “its going to be okay”, life is not over, once shock and awe is over, you will exhale and be able to breath again. For some of us parents, it does feel like your life is over, and to some extent it is. Life as you once knew it is over, you just have to learn to live your life a little different, and that my friend, takes time. So try to cut the newby parents some slack, doom and gloom is there, in the beginning, before we are able to realize, that yes, all is going to be okay again.

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    • Thanks, Christy, for telling your story. It sounds like you’ve got a smart and understanding medical team on your side.

      In writing this post, I tried hard not to come across as critical of parents of children with diabetes, and I apologize if it came across that way. My goal is to give confidence and encouragement to parents. That is something I believe is within my ability. Outside of my ability, or anyone’s ability for that matter, is being able to control emotions. I certainly would not fault or blame someone for feeling afraid, but I can give them the reassurance to hopefully give them a more positive outlook. That was my intent here.

      Thanks for your comment!

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      • FWIW, When I read Christy’s comment, I thought “Here is a new T1 parent who must be as happy as I am to have found Scott’s blog!” I’m a (sort of) new (1.5 years in) T1 parent too, and Scott is such a huge relief to me—the parents who are so dramatically devastated by the diagnosis drive me cuckoo. But Christy is right—it’s their way of soliciting help, reassurance, etc.

        I love Scott’s (your!) perspective on living with T1D. You + your outlook, and your response to the “This Could be It!!!!!” BS are a *huge* relief to me as a parent.

        I hope something I said made sense. I’m running out to the car before school and wanted to blabber.

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