It Cuts Both Ways

Picture of some rusty razor wire fencing

November 1st marks the start of Diabetes Awareness Month.

As I think about what that means for me, I start to feel a lot of emotion and anger towards diabetes, and what it means to live with diabetes.  In my case I’m talking specifically about living with type 1 diabetes.

Those of us living with diabetes have a really tough tightrope to walk.  On one hand we have to be sure to demonstrate that we can live a “normal” and successful life, with our diabetes.  We have to show that living with diabetes does not limit us in any way.  We have to prove that there is almost nothing we can’t do because of diabetes.

It is important to demonstrate this, because as soon as we start submitting to limitations, society will feel that they can put limitations on us without our permission.

But because we are all so good at this, and so strong (in ways many people never even think about), there is a misconception that everything is fine.  We don’t get the attention we deserve for research funding, and we don’t see huge initiatives that draw in crowds and media and (again) research funding.

Living with diabetes is no way to live.  Yes, things could always be worse.  But living the way we have to live is hard, and it is never ending.  Forever is a long time to struggle through each day.  I am angry that I have to live like this.  I deserve a cure.  You deserve a cure.

We are strong but we are tired.  We are patient but we are frustrated.  We are alive but have to fight for every single day we have.

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27 thoughts on “It Cuts Both Ways

  1. Scott, this really touched me because I have a feeling there are many days my son feels this way. He is VERY frustrated. He is 13 now and trying. When he was in 4th grade, the teacher read this book to the kids. The characters in the book found a “fountain of youth.” If they drank from it, they would live forever. The teacher assigned an essay to the class answering the question: “Would you drink from the fountain?Why or why not?” She wrote to me and told me that Luke was the only child who said no. His reason was that he didn’t want to live forever with Type 1 Diabetes. He would just die when he was meant to. Everytime I remember that it’s like a punch in the stomach. I think I’ll get busy and join some blogs.
    Thanks so much~

  2. I could not have said it better, though I’m sure I’ve tried! Thank you, and be sure I’ll be sharing this with those who really don’t get it, as well as some who do. 🙂

  3. I’m not holding my breath for a cure. But I’m always in awe and holding hope for ALL of us who do live with this crap everyday. We are “strong but we are tired. We are patient but we are frustrated. We are alive but have to fight for every single day we have.” I feel exactly like this most of my days. Thanks saying it for me 🙂

  4. As has been expressed here many times, that was very well said, Scott. That fine line between wanting people to understand the misery that comes with diabetes, yet wanting to be seen as being just as capable as anyone seems impossibly contradictory.
    I actually wrote my post today with you in mind, specifically a comment that was meant to encourage you, but didn’t sit well with me since it’s one I’ve seen said to too many diabetics. I might end up writing something inspired by this post too though. Lots to think about….

  5. Well said, as usual, Scott.
    The unrelenting nature of managing diabetes doesn’t care whether we are in a great mood or depressed as all getup. It doesn’t care if we have a yummy piece of chocolate cake or a cup of celery in front of us. We still have to manage it. Despite all our efforts and education, it often goes wrong, and It doesn’t care about that either. It doesn’t care about all the misinformed people out there, including people who should know better.
    Yeah, I think we can be appropriately angry at times, yet what’s the point? It doesn’t absolve us from managing it. No breaks, no holidays.
    The ‘cure within 5 years’ thing is getting very old after 30 years. Hats off to the researchers, but how much longer?

  6. Great Post…I love how you express what I have been feeling. Let’s find a cure guys!!! So tired of swinging blood sugars. Thanks for your words

  7. Scott, this is possibly your best blog. You set a good tone for Diabetes Awareness Month. I’ve noticed a disconnect between what some diabetics say and what they live. What I might hear as a lie, is really a subterfuge of reality that has been projected on long standing D’s.
    Eating out with friends, I was deciding if I could find something on the ethnic menu. The gal next to me said her D friend ate everything just fine. D didn’t stop her from doing anything. I tried to sink into the background, apparently having failed at being invisible or nonchalant about D, food, insulin, the long walk there(adjust pump), the long walk back (more pump adjustmets), and so on. Was the gal sitting next to me ignorant about D or did her friend hide the negatives about life with diabetes? I appreciate cheerful, brave people. But I appreciate truth, too.
    Having someone affirm that we are doing intense medical therapy on ourself to live does not require pity, but some sort of acknowledgement of this acquired skill set and our tenacity to simulate normal!
    Scrutiny can do strange things to people…whole groups of people. Thanks for explaining the disconnect that I could see, but not comprehend.

  8. Well Scott – after 50 yrs of this – I agree with every word you have said. Your words are very well said as well, so thank you for a wonderful post.

  9. im with you on this one scott.all the zen like sayings in the world dont really help.the glass can be half empty or half full.doe not matter there is still water in it.its not just the 15 minuets.its the always on your mind thing.ignoring this or pretending all is well just compounds everything.depression and all that goes with it is just another part of d.just for the record i dont think this is a depression blog but more of a statement.and just for the record yea it takes more than 15 minutes a day.

  10. Embrace; the reed that bends survives better than the firm reed that breaks.
    If I thought about it I would have jumped out a window a long time ago. Instead, look at today and how you can embrace things. And seriously, does diabetes really take more than 15 minutes a day to deal with?

  11. Scott-
    I read your post earlier! great post! I am sorry you are going through a funk…I’m sending hugs! I wish I could relate to you but I’m still new to it all. I am learning from all of you diabetes vets! Keep your head up. Smile. Laugh and Tweet. We all are here for you! If we live to see a cure it’s all good and if not we are here to hold each others hands, pat each other on the back, complain, laugh and cry. Thank you for allowing me to see what living with diabetes has been like for you. Thank you for opening my eyes by reading your blogs.
    Yes, I have diabetes but I also gained a great bro! Your awesome! Your strong and did I mention you ROCK!
    Be Blessed

  12. “We are strong but we are tired. We are patient but we are frustrated. We are alive but have to fight for every single day we have.”
    Bravo Scott! you’ve put into words what we are all feeling-THANK YOU.
    I wish I could give you a big hug right now!
    kelly k

  13. We have no Lance. He’s doing phenomenal things for a very worthwhile charity. But I feel like he’s talking to me and my disease. That’s why I follow him, that’s why I contribute to his cause, that’s where I see if we had the passion we could really get noticed. But with all this control and keeping us silent, we don’t demand more. It’s almost like we have to apologize for asking for a little attention. I knew from the start type 1 would never be cured, but a sincere effort would still be a nice thing.
    Live Strong everyone…. Jennifer

  14. What a beautiful post, Scott. Diabetes Month is bittersweet for me sometimes, too, because it’s like, “Oh, everyone look at this disease for the month of November and then move on to something else!” But for those of us living with it or caring for it, it’s every day, regardless of the season.
    Strong but tired. I feel you on that one, my friend.

  15. from the other side of things, it’s like, “eat right and exercise and everything will be ok.” So much effort to eat right and get moving, especially this time of year with winter setting in. Sigh.

  16. Totally understand and ‘get it’ when you say we’re urged to be strong, etc… I wish it was in my guts to say ‘Hey, I can’t do this anymore, Help’..! I’d love to, but would actually feel kind of guilty doing so. I’m lucky to -so far- not have a lot going on with me other than the diabetes
    But I am going to be fair here too. Maybe we have a long row to hoe BECAUSE we can actually hoe it. We have that land to plow and tend to and may everyone’s ‘Row’ be a long one.
    About 6 years after being diagnosed, I came to my Dr having a pity party and bless him, he tried to bolster my spirits. I *did* feel a bit better having talked it out. I left his office, and went to my little community service job visiting the elderly in their homes. I’d do their Rx pick ups, to the store, post office whatever, sometimes it would be a wee visit, just to say hi and see that they were OK.
    One of my ‘Ladies’ asked how Dr. Prakash’s daughter was doing. I said ‘I don’t know, why?’ Because I really did not know.
    (This was in Antrim, Northern Ireland, so the accent was from this ninety year-old lady…aweee….)
    “Ogh, Sure, Jenny! She’s nine years old and has a brain tumour, poor wee gurl”
    Oh. … Shit.
    So yes, we are tired because we have been at this a long time. That little girl did not have 5 months after I saw my Doctor. Here’s him, in a field of healing and yet he had no way of helping his little girl, Sushma. She passed away in the summer. I felt so crappy, complaining about something I could actually control, but she couldn’t, that I just try to keep on keepin’ on.
    I know that we live this, it is close to US and WE want better. I still DO get the “poor me’s ” every so often, but I think while we fight we can’t give in. We must also try to remember for our own sanity, that yes, things could indeed be a lot worse than we may ever know.
    (After the doctor took a semi-retirement, he opened an eldercare home on the Antrim Road naming it after his daughter.)

  17. A freakin’ Men! This little ditty sums it up perfectly. Well said Scott. Nice to know that there are others out there who really “get it”! Type 1 diabetes deserves a cure in our lifetime!!!! How can I help?

  18. I certainly hear you, and it’s all about changing the conversation so that patients with diabetes control it, not the numerous other parties involved. That includes doctors (and their trade association, the American Diabetes Association), who tend to dominate all that is said about diabetes. These blogs are a great first start, but more needs to be done!!