Today, I saw one of my sons blithely dipping a chip into salsa, happily munching away while multi-tasking at something else – not a care in the world about his food.
It brought a smile to my face – but there was a touch of sadness with it.
You see, my work has brought me into contact with a number of PWDs (People With Diabetes) who are active on-line. And as I’ve read their blogs and tweets, talked to a number of them personally, and done my research, I’ve come to the same conclusion that they all have.
I don’t suffer from diabetes, nor does anyone in my extended family. But as I see how diabetes can essentially take over one’s life – the incessant measuring, and managing, and planning, and adjusting, all because a pancreas goes out on permanent strike (Type 1) and blood sugar levels run riot – it’s obvious that for many, diabetes is a 24/7 companion. Like having been at the altar in a shotgun wedding, where you never chose to say “I do.”
Instead, diabetes said, “You will. Deal with me.”
Some of the diabetes bloggers have kindly educated me about the disease and helped me understand – as much as is possible – what a crazy and wearying ride it is every day, just to stay on top of it. The endlessness of it. The disease guilt. The survivors’ guilt. The constant fear of the future as diabetes takes its ongoing toll on health. The fear about having children. The elusive cure which never seems to get closer.
The supplies, the equipment, the insulin, the hassles with insurance. The inability, ever, to just sit down and enjoy a meal without thinking about carbs and sugars and highs and lows and bolused insulin and “will people despise me if I eat this cupcake?”
Yes, add in the lack of understanding from society at large.
I honestly don’t know how some of these friends – including parents with children who have this condition – get through the day. I can’t imagine there’s ever 20 minutes that goes by without having to think about something diabetes-related.
Tonight, we will go to a dinner with some other families, and I won’t have to think about what I’m eating, or what my blood sugar level is – I am blessed beyond measure to have a pancreas that just works. But for thousands, that is not the case and it never will be. PWDs are blessed with amazing technology and medicines that help them live. And I’m thankful to have a chance to get to know these folks. Nonetheless, this much is abundantly clear.
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As a type one diabetic I agree, diabetes sucks. Regarding keeping pharma research hones, One interesting recent development is that FDA has updated their inspection program for pharmaceutical companies conducting clinical trials. You can access it on the FDA website here:
Laura Houston says
I found this post from a few people that ‘shared’ it on Facebook. I am a mom of a CWD – my son was diagnosed at 14-months almost 19-months ago. I’ve never read a post from someone without living with D that totally ‘gets it’. I can tell that you do and you are right Diabetes Sucks! Thank you for the great post.
I disagree with so many elements of this post it’s hard to know where to start. First, as a T1 for 51 years with no complications and 100 percent healthy, I take strong issue with the notion that D is a serious hardship. It’s never prevented me from doing anything or succeeding. It’s not a disability or some heavy, oppressive weight I carry through life. In short, it’s no burden and I’ve never regretted or bemoaned it. Not for second; not ever.
Are we forced to adapt and adjust? Sure. But that happens to all people everyday.
Compared to some of the true suffering and aching hardship I’ve seen in Africa or Iraq or even New Orleans after Katrina as part of my job, living with T1 is the easiest possible path through life.
I think we all – PWD and those without – should keep this in minds.
Steve Woodruff says
Either you’re an exception to everyone I’ve ever met with diabetes, or you’re the most upbeat person ever, or you’re an anonymous poseur. Can’t decide which…! (isn’t a T1 that is “100% healthy” a contradiction in terms??)
I admire your skepticism but I can guarantee you I am authentic (dx at 8 mos). And no, the 100 percent healthy description describes me since I have no complications and after all these years D has a very small footprint in my daily life. (In my spare time, I ref pro and elite soccer which means a 52-year-old man runs with college athletes.)
I honestly have zero regrets. In fact, I firmly believe I’m healthier because of D because it’s focused my attention on what I eat, how I exercise and how I prioritize things in my life.
Here’s the truth – it’s harder being the parent of a diabetic than the actual diabetic.
You’ll have to trust me on that one but I have no doubt it’s true.
donna schindler says
To Scribe: I just wish you would do charity to other type 1 diabetics like my newly diagnosed son at 13 and be “out” with your condition. Instead you hide it like it is something to be ashamed of. You could be an inspiration to so many, and educate the general public on this condition, because you are in the unique position to do so as a famous journalist. You have been given much, but you give nothing back. Shame on you. You have taken the easy way out, selfishly.
Leighann of D-Mom Blog says
I am the parent of a six-year-old with diabetes and the way I always think of it in regards to children is “innocence lost.” It’s not fair for a child to have to be anything but a carefree child.
But I see these young children taking it all in stride and adapting, perhaps more easily than many adults would, to the new routines and demands.
Diabetes is obviously not something we signed up for, but we are doing the best we can with the knowledge and technology available and making diabetes just background noise in our child’s life.
( I just wrote a LONG comment, but decided perhaps it’s better to write that on my blog and link over.)
I cannot thank you enough for writing this post. It does appear that you get it…like Laura and Leighanne, I am the mother of a 7 year old with T1, dx’d at age 3. It is extremely hard, both emotionally and physically to keep up with this whirlwind of a disease…but we do it because we have to and the alternative is just not acceptable. I thank you tremendously for knowing your facts prior to writing and for helping us in educating the non D folks!!
T1 and T1 Mom says
While Scribe often posts about his miraculous life with diabetes, most T1’s do not have the same perspective. I hate the disease and I hate what it is doing to my child.
I often read scribes post at another website and am always left to wonder what drugs he is on and where can I get some. His posts in no way shape or form match anything I have ever experienced in myself or my child.
First of all, thank you for acknowledging the T1 community and the hurdles we jump to maintain wellness. I genuinely appreciate the time you’ve taken to learn about T1 and the intricate details that are necessary to manage this disease.
To address Scribe, I’d like to say that I hope — I REALLY HOPE — that, one day, my daughter will be able to look back and say that her diabetes is no big deal.
For now, however, she can’t. She’s 7 and was dx almost 6 years ago. No matter how hard I try to carry the burden…no matter how I try to protect her from worries…no matter how vigilant I am trying to keep up with growth spurts and avoiding rapid swings from highs to lows…she still can’t escape this reality.
At night when I check her, she wakes up and asks what her number is. She gets nervous about jumping on a trampoline or going to a birthday party with a bounce house because she understands the impact it may have on her blood sugar. She gets frustrated when she’s trying to read, but her eyes are blurry because her blood sugar is high. She carries her bag of supplies everywhere and panics if she loses sight of it.
I can appreciate that there are tragedies in this world that make living with T1 Diabetes seem mundane. Those horrific scenes provide perspective and act as a reminder to me that every day is a precious blessing. I also appreciate that you feel T1 is simply “no big deal” in your life.
But it is a big deal in ours…and there’s nothing “normal” about poking your kid for drops of blood, counting every carb she puts into her mouth, and desperately trying to make sure everyone around her understands how to recognize and treat a low blood sugar.
If there’s anything I’ve learned over the past 6 years, it’s that T1 is a beast that must be respected. It cannot — EVER — be misconstrued as a minor inconvenience, because the second I let down my guard, it could take her life.
As the mother of a 3 year old little girl (who was dx’d at 12 months), this was a very refreshing read. Diabetes is so all-consuming and doesn’t play fair… you can do everything exactly right and STILL get numbers that make no sense. It’s like trying to play a game and the rules keep changing on you.
As the mother of a CWD, I want to thank you for “getting it”. Not many people truly do. As for Scribe… I can assure you he is in the minority. No, we don’t all sit around saying “Oh woe is me” day in and day out, but D IS hard on everyone involved and it DOES suck!
Thank you for publishing this blog about your perspective of a life with Type 1, from the outside looking in. You are a rare voice in that I have NEVER met someone who is not either a Type 1 Diabetic or directly caring for one, that understands Type 1 Diabetes. I HAVE met many people who think that they do. My son has been struggling with this all consuming disease for two difficult years. I do not agree with Scribe about his perspective but I really wish that I did. We had life before type 1 and now we have life after and we know the difference. The difference is not anything I would hope for anyone. Life with Type 1 is about constant monitoring, constant worry, constant calculation, constantly making changes so that this all important number can be in an acceptable range. The number that says life or death, complications or relative health. Weighing, caluclating, measuringing, pricking fingers and inserting insulin pods into the skin, inserting long continuous glucose monitor sensors into the skin and being careful not to damage or lose any of this precious, lifesaving equipment. Having to feel sick because the equipment is not working as it should and needing to abort any plans previously made because of some malfunction or error. Even as recently as this morning, a simple breakfast bolus, meant to provide my son with insulin so that he can EAT goes wrong, the pod has an occlusion, I know it is only 6:00a.m., that doesn’t matter, we have done this in the middle of the night when I can barely even keep my eyes open – now we need to disable this pod, take it off, prepare another and get that inserted into your flesh. This is going to be a problem, pods changes always make your blood sugar rise, we have to offset that, extra bolus required, only problem is that you are going on a bus now and that bolus COULD potentially bring you low, what to do? When should you eat this breakfast? If you eat this now, your blood sugar will be 400+, you have to wait but how long? Will you remember to eat it on your own? If you begin to suffer from low blood sugar and are at school, will your brain be functioning enough to tell you that you are? What will keep you safe? You come home from school and you are at 85, you see your friend outside and just want to hop out of that car and go join him in a game of one on one, but that number is not okay for 1 on 1, not for you – – – you need to injest something quick acting and something for the long haul and this must take place before you jump out of the car. Then, when you come home at 300 is it because of a temporary adrenaline high blood sugar that will wear or is it one that we need to deal with and give you more insulin for? How do we know what to do? The decision we make could be a difference between life and death, you are going to bed soon, we need to make right choice.
Everytime we leave this house, we must have our diabetic technology in tow, without it, you are not safe. You cannot eat…. anything. You cannot test your blood and testing blood is one of your lifelines. You cannot turn down the amount of insulin that is prgrammed to go into his blood for anything without his pdm and that could be so dangerous.
Yes, this is just an exerpt of the burden that we bear. Life has changed and not for the better. I am glad he is alive, that is certain but he has absolutely lost the carefree childhood to a disease that came and swept it all away, one fateful day. Just likea tsunami that took away a house, a neighborhood and worldly possessions. His life is still here but the life that he knew before no longer exists. Why? I don’t know why. I just hope one day a cure will take these burdens and complications away from all of these innocent children who will become Type 1 adults, God willing. It isn’t fair, it isn’t easy, it isn’t okay.