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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Scott K. Johnson

Patient voice, speaker, writer, advocate, and Senior Community Manager at Blue Circle Health. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent my employer’s position. Read more…

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