A Call to Action


CureDiabetesPenny has posted a Call to Action.

Please go take a look at her post. She really makes some great points about the general lack of awareness that exists in the public eye.

The majority of what we do see every day focuses on type 2 diabetes. With that making up 90% of the diabetic population, I guess it makes sense. But it also makes me look at all of this “National Diabetes Month” and other events with a little bit of selfish annoyance. Why? Even I can’t make much sense of it.

I think that much of it comes from being angry about cures promised to me 20 years ago. 26 years later and we’re not any closer. It’s frustrating, and it takes the wind right out of your sails. But it’s also wrong of me to automatically have such a negatively biased take on everything. It’s not fair. I’m trying to be better about that.

In Penny’s post, she encourages us to post about what living with diabetes means to us, and why it is so important for the public to get involved with fighting this disease too. I put together some of my first thoughts, and they are hard to read about. I think of my dad, who will have a hard time reading these things, and I think about my other loved ones who care so much about me too. But these are the things that first jumped into my head. People won’t care about a cure if the treatment (insulin) seems to be good enough. It’s not.

So, here are the thoughts that I documented shortly after reading Penny’s post:

Living with diabetes cannot be explained to anyone. It is very difficult to put into word these vague but important feelings you have. Sometimes it’s difficult to find the word or words for the feelings you have.

Feeling of isolation or loneliness is a feeling I’m often dealing with. Feeling like the only one in the world who has to juggle all of the things that need to be juggled, feeling like the only one who has to test blood sugars, count carbohydrates, anticipate and react, deal with highs and lows, and constantly worrying about whether or not I’m doing it all good enough.

At the age of 31, I’m already contemplating what my last days will be like. On one hand, I’m not afraid. Recognizing that my passing will be a point where I can finally get some peace, and not having to deal with all that diabetes throws at you. But on the other hand, while I do know that my friends and family will be there, I will be the one going through whatever it is that is happening. That sounds lonely.

Feeling tired is a constant. Not tired as in sleepy, but tired of dealing with it all. It is too much and it is all the time. There is never a point where I can stop thinking about where I’m at, where I’m headed, where I’ve come from, what activity might I be doing soon, have I done any activity recently, what might I eat soon, what have I eaten recently, etc. The list goes on and on, and then on some more. I tire of dealing with it all.

I also tire of feeling crummy when my blood sugar is high or low, and of always questioning the perception what I did wrong or failed to do to get me there. Sure, there are times when it really is nothing I did or didn’t do – but I believe those times are rare. More often it is something I perceive I did or didn’t do, or something I feel I did wrong. I don’t even want to talk about the guilt and shame associated with that.

I get frustrated with the amount of time it takes to treat a high or low blood sugar. In the case of a low, it’s often only about 15 minutes. But DURING that low, those 15 minutes feel like an eternity. The HOURS spent trying to come back down after a high blood sugar. It’s awful. I just want to sleep it all away.

I often get scared. Sometimes it is an immediate thing, like a low that I’m worried I won’t be able to handle myself. Or a low while I’m alone with my kids. Those things are truly scary, and you feel the cold fingers of fear on the back of your neck whenever you sense the situation approaching.

Sometimes it is a fear of what the future holds. What complications might I battle with, and what will those battles be like? I think that the fear of complications is more general, and when faced with a complication I will find a way to cope and get through it. But it is still scary to think about.

There is a lot of misunderstanding around managing diabetes. That lack of control means a lack of effort. That because my blood sugar numbers or A1C results are high, that I don’t try very hard to keep them lower. If I develop complications the perception is that I didn’t try hard enough or work hard enough.

What about the fact that the tools available to us today are still very primitive? Sure, they are way better than what was available years ago – but they are still primitive. I can try until I’m blue in the face, work as hard as I can, and I still may not be able to reach my target range.

Diabetes is also a very expensive condition to live with. If you don’t have some form of insurance coverage I don’t believe you could maintain for long. Even with insurance coverage there are months where I simply can’t get as many test strips as I would like. I’m often sacrificing purchasing other things just so I can afford to get my insulin or thyroid pills.

The cost of insurance coverage is always going up, and the benefits covering less and less. It’s scary to think about. It’s frustrating to feel like you are not able to get the tools you need to try your best with managing diabetes. There are enough daily battles living with diabetes that having to jump through extra hoops can really beat you into submission.

With all that being said, there are times where diabetes is not in the forefront of your brain. Times where you push it into the background and do the other things that life is about. But it’s really not long before you have to pull it forward again, or when it’s forced to the forefront by a low or a high, some feeling that totally interrupts whatever it was you were doing.

We find a way to live life, to move on with things. To work. To play. To survive.

Because we have to.

A day later, I read through all of that and it sounds pretty terrible. But you know what – those are the uncensored thoughts that came to me. The truth of living with diabetes has to be recognized as a difficult thing to do in order for there to be any priority in working for the cure or advancing therapy.

I did not write this looking for sympathy or well wishes. I am Ok, life moves on and I find a way to make it. But living with diabetes really sucks most of the time, and it needs to be talked about. People “out there” need to understand that it is a hard thing to live with.

So there you have it.

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15 thoughts on “A Call to Action

  1. Excellent words Scott. I gotta agree with everything you said. The non-diabetics need to hear what it is like roughing it with diabetes. And they should be grateful for what all they have.

    Somedays it just feels like you have a big sign on your head saying “I AM A DIABETIC!” Then everyone starts staring at you and asking questions. You jsut start wishing it could all go away and you get a normal life back the way it was before you were diagnosed!

    Us with medical cards or insurance etc. are put on the back burner. My doctor pretty much told me there is nothing I can afford to help me with my diabetes. I could get a pump that checks my sugar, but no… I “can’t afford it” because medical card will not pay for it. It gets frustrating!

    We have to stick it out. Live for those who love you and prove wrong those who say you will never make. We can someday make it through all these rough and rocky roads!

  2. It’s so great to read your honest feelings. My husband has type 1 diabetes (for 18 years) and we both struggle everyday. We have seven children and the children are also affected. The highs and lows are frustrating and scary for both of us. The cost of the supplies is through the roof. We are blessed to have decent health insurance and my father foots much of the bill as well. I have often wished I could steel this disease from my husband who rarely talks about it and falls into a depression each time he hits a serious low (which is at least once/week). I wish people understood, or cared, how hard this disease is to live with. Both for the ones that have it and for those that care for them.

  3. Scott, thank you for your honest words. As usual, you say what I feel. Just this afternoon driving home from the grocery store, I saw the most beautiful sunset. I love sunsets (and sunrises for that matter). Then, in crept the thought…”I wonder how many more of these I will be able to see?”, almost as if someone else had said it. Diabetes really does invade so much of life.

  4. Scott,

    Achingly honest post, Scott. This is why I read your blog, because you say the things that other people would be too scared to admit. Your honesty is inspiring.

    People need to know that this isn’t a cured disease. It’s barely managable some days. More focus needs to be placed on diabetes because it affects every moment of our lives, and the lives of those who love us. Insulin is not a cure.

    Your voice is strong. And we all join in the chorus.

  5. Scott, thank you for writing this.

    It gives me insight into what Brendon is going through and will go through. You’ve written things that Brendon isn’t able to put to words at his age.

  6. Thanks Scott for writing this and for not going back and deleting your thoughts the next day.

    If we were to compile a little book of readings that non-diabetics should read to understand us just a little better, this entry would be the type of thing I would include. It’s also the only way we can feel connected is if we’re honest about it.

    Thanks again.

  7. Scott

    Can I call you a brother? Because in the community of type 1 diabetes, we kind of are brothers sharing a common illness with the same types of frustrations.

    Anyway, thank you for the heartfelt truth in your posting. And thanks for this idea.

    It’s a little frustrating that we’re in Diabetes Awareness Month and that the only ones (right now) who seem to be aware of this are those who already have this disease.

    I’ll have to dig out my pin and start wearing it for the rest of the month.

  8. GREAT POST.What you say is what it is REALLY like to live with this disease. Gosh Scott, you are one great writer! I have nothing to add since you put it all so correctly. The loneliness, the guilt, the never-endingness, the costs, the fears of death and complications, the anger about T2 talk, promised cures, simple solutions, stupid advice and doctors’ pat solutions…… Thank you Scott!

  9. Scott,
    I can’t tell you what it did to me to read this post. My young Teen daughter has been fighting diabetes for just over four years now. She feels your pain, and your words are an echo of how she feels. She doesn’t want to die from diabetes complications, yes she is only 14 and is already thinking about how diabetes is going to kill her. She even said she would donate her body to science to help doctors figure out how to better fight this disease. This disease is very real and very frustrating. And you are right, you can’t just take a day off from this disease. She gets so tired of fighting. I get tired of fighting. It is so easy to say I don’t care. Just let it go, but we know that if we let it go the pain in the end will be way worse. And at times it seems no matter how hard you try you can’t get it right. My heart breaks for her and for you as well. I so appreciate your blog. I can help my daughter through you. You are not alone in your battle. We are fighting right along side of you. And thanks again for being so open, real, vulnerable. Your thoughts help me to know how my girl feels, I may have to print this out and read it every so often so I don’t forget how hard this battle is to fight. I pray someday that there will be a cure for this disease so that those who come along later don’t have to fight this battle in such a brutal way as we do. I don’t want it to be easier to treat. I don’t want it to be cured, I want it to be prevented all together. I don’t want the future generation to have to deal with it at all, but alas I think that is asking too much. This post was very moving. Keep your head up and know that you are not alone.


  10. Scott,
    Thank you for this. I am going to write my own living with diabetes account now, you have inspired me.

    Myself and either Gracie or Sandis will be up in the cities twice in the next week or so. My email changed, and I lost yours in the charter battle. I have aol now, will you email me at [email protected]?

    thanks again for your outlook on diabetes. I remember the first time I started reading this blog, I read from “star” to “finish”.

  11. Nicley written. I don’t know what its like living with diabetes, but several people in my family are struggling to manage it everyday.

    Thanks for sharing.

  12. Oh Scott, I only cry when something hits a big chink in my armor—-and, all of your points did……I get so mad at my family because they pretend that nothing’s wrong and that I don’t have special needs. And, we just got our ’07 benefits package at work and for me to stay on Health Partners will increase my out of pocket payment by 40%.
    I used to spend a ton of time thinking about my death, but, somehow, I seem to have gotten over it and am now focused more on life – maybe it’s just the advancing years that have helped me focus on the here and now.

    Sigh………..have a good week ahead my brother. And remember, your constant wisdom and support to the OC has made a big difference for a lot of people!

  13. Scott,
    Thank you so much for sharing that. While all that you said is somewhat of a downer, it’s all true.

    It is great (and neccisary) to focus on the positives most of the times, but if we (PWD and their parents) are not honest with ourselves about what this disease really is, then how will the general public know why it is important for them to get involved?

    Again, thanks, and I’m going to link to your post from my blog. I think everyone needs to read this.

  14. I love this post.

    I sometimes feel as though all Type 1’s get the short end of the stick because we have the rare kind of D. It is annoying.

    I do agree that more non=diabetic need to hear and understand how difficult it is just to wake up each day and look down the road of life you have to travel down.

    Each day I look down that road and wish I could stay put for just one day. That I could run off road and screw the life I have been dealt but we have to just plug along and deal and it sucks.

    I also agree that sometimes we just need to get it out and do not need sympathy. Sometimes just getting this crap off your chest is all you need!

    You are better than OK in my book dood!