Diabetes Self-Management Blog

A little while back, I asked some of my friends with Type 1 diabetes what their favorite thing was about living with the condition, followed by their least favorite thing. I’ve decided to make a post out of those responses, in the hopes that those of you with Type 1 will be reminded that you’re not alone in this and that there is always someone else out there who gets what you’re going through!

The list of least favorite things ranged from minor things to pretty substantial issues. I’ll start with those little things that just really push our buttons: One of the first responses I got was, “I absolutely hate it when my tubing gets caught on doorknobs!” I can’t even begin to describe how many times this very thing has happened to me and how annoying it is! In my case, it usually ends up hurting more when my site stays in rather than the entire thing just getting pulled out. It is such a quick little nuisance, but when it happens it is so irritating!

Another response that I got quite a few times was “I hate it when people ask me if I’m allowed to eat certain things.” This is one thing that is of course annoying after it happens a million and one times, but it’s one of the things that annoys me the least. Whenever it does happen (and don’t get me wrong, it definitely bugs me), I just remind myself that this person doesn’t understand Type 1 diabetes. They hear “diabetes” and automatically assume it means no sugar because of the misperceptions and confusion between Type 1 and Type 2.

A little spin-off of this particular situation that really got to me about two weeks ago was when I had an episode of low blood sugar, and a friend of mine told me that I should take better care of myself and not let my blood sugar get to that point. I can’t think of anything I would rather hear less while experiencing low blood sugar. I know that she meant well, but it just came off as though it was some sort of inconvenience for her. I was really appalled at what she said, especially because no one has ever said something like that to me. But again, I really did my best to remember that she doesn’t know what it’s like to experience low blood sugar and probably just assumed that I had made some conscious mistake or intentionally neglected to monitor myself, thus leading to the low.

One response that I got that really hit home was “I hate that I never get a break from diabetes.” I consider myself lucky in that I don’t usually get bummed about having to deal with diabetes 24/7, because it’s become another part of my routine. At this point, I think it would be a HUGE adjustment if diabetes were suddenly cured. Where some people might think, “Oh! You could finally go back to normal,” the truth is that diabetes has become my normal. However, it is very true that dealing with highs and lows can be exhausting, especially on days when it feels like nothing is going right. Literally, you can never take a break. You can’t decide that one day of the week you’re not going to check or give insulin because you need a break. You simply can’t.

Now enough of the negatives, and on to the positives! In my personal experience, the reality of it is that the positives in dealing with Type 1 FAR outweigh the negatives. As with anything in life, it’s up to you to make the best of situations that are handed to you.

By far, the most common response I received regarding individuals’ favorite thing about living with Type 1 was, “I love that I get to meet people from all over the world dealing with the same thing as me!” There is something so special about meeting someone and having an instant connection with him or her from the first moment you interact. Regardless of whether you’re from the US, Italy, Australia, Colombia, or Russia (all places I know people from), you have a shared experience.

Diabetes doesn’t discriminate when it comes to what country you’re from, what age you are, or what language you speak. One of the most interesting things about meeting people with Type 1 from different countries is that you get to learn a lot about what differences there are between dealing with it here in the States versus abroad. While we all face similar experiences in how we personally deal with our diabetes, there are some major societal differences that can make the experience very different. For instance, in some countries having Type 1 is seen as taboo, and it isn’t something that is discussed outside of the family. In others, getting an insulin pump is ridiculously difficult in comparison to the relative ease with which you can get one here.

For many of us who attend the Children With Diabetes conferences (where we make these connections), diabetes serves as the medium by which we learn about different parts of the world. It becomes the thread that ties us to people from all different places, and opens up our minds to understanding not only diabetes across the world, but just how other people live, because suddenly you have real friends living in all of the countries I mentioned above and more. More often than not, people only have a few friends who live in different parts of the US, and many times knowing anyone at all in a different city or country is simply attributed to family members who have moved to various places.

Through having Type 1 and attending the CWD conferences, my network of friends is insane. I’m not kidding when I say that I know people who live in Italy, Colombia, Australia, Russia, Scotland, England, Denmark, and more, all because we all have Type 1 diabetes. (Don’t even ask me to list people from the States, because we’d be here forever)! It’s really incredible to meet people throughout life and hear where they’re from, and more often than not be able to say “Hey, I actually know someone from Wisconsin!” or, “Wait, my friend lives 25 minutes from that town in California!”

I only now just realized that essentially the only “pro” I wrote about is meeting people from all over the world, but the truth is that in itself is enough to beat out any of the “cons”… at least for me. I definitely have quite a few other positives, but think I’ll save them for later on, as this post is already getting quite lengthy! But I promise that in coming posts I’ll talk about more of the positives of living with Type 1, because they definitely exist!

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Comments
  1. Sorry but as a fellow type 1, I find this article ridiculous. I’m all for positive thinking and reinforcement, but to try and get people to accept that ALL the negative elements of type 1 are “far outweighed” by positives of engaging with fellow sufferers is patronising and infantile.

    It may be enough to outweight getting tubing caught or any other minor detail, but let’s get real about not just the challenges of management but the reality of what we’re dealing with - it’s a disease in which even the very best managed that barely put a foot wrong (at the cost of thousands of hours of attentiveness and limitless sacrifice) are overwhelmingly likely to suffer serious health consequences sooner or later as a result.

    Of course there are some positives (not least being encouraged to live healthfully in respect of diet & exercise) but to suggest that the negatives are so minor as to be outweighed by some social interaction is dangerous - it’s hard enough to get people to take diabetes seriously (distinguishing types, recognising typical lack of fault in the sufferer and severity of condition faced even for those who don’t “look ill”). To belittle the negatives may support a very childish attempt at positive thinking, but it is ill considered, inaccurate and unhelpful.

    Posted by BobS |
  2. That was great to read. That really cheered me up. Was so annoyed at myself for having a 28 this morning, made me feel rubbish, but I have a throat infection and insulin is not touching the sides lately, something of a con I’d definitely say! However this was a great read. I need to go to a conference. Or start my own. I don’t know anyone in the flesh although I have built up a rather impressive collection of type1s on my Facebook account. Lol. Keep writing it’s fantastic. Lots of love Jess, mother of two, 23, Essex UK.

    Posted by Jess |
  3. Nice idea this topic!

    I do not think about life’s negatives very much I think positive. I have looked to each day as another blessing for 55 years as a Type 1. Naturally, I have those days when nothing turns out “right” for me. I just take care of it and get on with the rest of the day! Staying active helps me a great deal.

    I have learned about better food choices for our family. This acquired information provided my hubby and myself with more knowledge that might not have been noticed otherwise.

    I made up my mind that Type 1 diabetes would not change our family life style any more than necessary. We made errors,of course, but we kept learning!

    Posted by joan |
  4. Sadly, I know of one other plus. I don’t know how many gals ran as soon as they found out I was on insulin. Almost as good as a hunchback, there.

    Posted by steve davis |
  5. I’m a newbe to type 1 having had my pancreaus out due to pancreatic cancer. The article really lifted my spirits! I would love to hear from others - I’m just trying to get adjusted to “shooting up” (no pump yet - my HMO is still deciding) 5 times a day and fighting with Medicare/HMO about how many times I need to check my blood sugar levels (still geting used to what it feels like to have a high or a low!)…Does anyone have any good words, encouragement, ideas, etc????

    Posted by anna frederiksen |
  6. I think this was a good article and one of the things I “like” best about being a Type 1 is the opportunity to educate people about the difference between 1’s and 2’s as well as the opportunity to encourage those at risk for Type 2 to get checked and how to help prevent or delay common side effects of the disease. My Mom always told me diabetes isn’t something you have to die from, you learn to live with it and I strive to do that daily and, quite honestly, rarely think about after 42 years with it. I pay attention to my sugars, pump when I eat, exercise daily and live my life. Thank you for this article!

    Posted by Dawn |
  7. Bob, I’m sorry you find this “ridiculous.” Perhaps because you have a different perspective than me, you view this as “patronizing & infantile.” However my experience has been one that is largely positive. I understand that people’s experiences range from positive to hugely negative, but this is not an article. This is a blog, and being so, reflects my personal opinion and sometimes (as in this particular post) opinions of my close friends and acquaintances. If you have constructive criticism or something you’d like me to write about, please feel free to share. As a person who likes to look life in the face with a smile, I prefer to focus on the positives rather than the negatives. I hope that one day you can feel the same way! Otherwise, always feel free to comment on my posts, but I’d appreciate it if you didn’t refer to them as infantile, patronizing, and childish. I’ve had Type 1 for almost 10 years… a rookie by some standards, but certainly long enough to have a mature opinion of my own. :)

    Jess, I am SOOO happy that this cheered you up a bit!! That was 100% the goal! :) There are actually conferences in the UK! Check out for more info!!

    Joan, thanks for sharing! I’m so inspired to hear of your positive outlook and the ways you’ve implemented the complete healthy lifestyle! You certainly could teach me a thing or two on getting it all together! ;)

    Steve, I’m bummed to hear that! But HEY, at least they ran away sooner rather than later…if something like being on insulin is enough to scare them off, then you DEFINITELY don’t want to waste your time with people that shallow! You will certainly meet someone one day who could care less if you are on insulin or not!!! ;)

    Posted by Maryam |
  8. Oh maryam i wish i got to see you more. I really enjoy reading your posts whenever you put them up on facebook. It really helps to see these stories and be like “oh hey i was thinking that too!!!.” While there are many negatives to diabetes, it is important you always look on the bright side of life. And yes i understand that some things are bound to happen eventually, but if you dwell on those tings nothing good will ever come. There is always the scare of something going wrong, its life and blame Murphey for all your problems. While insulin is first line, i believe a solid support group ties for second with glucose tabs and candy. The support is what we need, what keeps us from giving up, and more importantly, spreading the word so we can educate others. I have a word of advice for you Steve so i hope you read this. As much as they may run, your probably better off. From my experiences ive found that many people are just scared of what they dont know, and when u find someone who does understand it works out perfectly. Life is a learning experience, so just let diabetes be one chapter, not the title of the book. DX’D 12/5/01 Much love FFL 4EVA <3

    Posted by jesse nagel |
  9. Whilst Bob may think being able to call a friend and commiserate is patronising and infantile, I love knowing I can call my friends with type 1 and complain or just say “ya know, today this really blows”. His comment about “overwhelmingly likely to suffer the consequences” sooner or later show, to me, someone who isn’t educated about how taking proper care can prevent these consequences…and for me, that education is not about how to test one’s blood sugar while riding a bike (I’ve done it!…without stopping) or proper injection technique…but the education about surrounding yourself with people who do understand and can say “try it this way” or “yup, this blows, but you’ll get through it”. Research has shown those with poor psycho social support fair worse than do those who have a strong network of friends and family.
    My diabetes control went from good to excellent when I quit hiding it and started showing it…caring for the emotional is just as important or even more so, than caring for the physical.
    Love it, Maryam!!!

    Posted by Meghan |
  10. Where do you meet all these people. I can’t even find a diabetes group anywhere. I do not know anyone who has it. Thing that get me is people are always telling me I don’t eat much. Low blood sugar is no longer a problem with me since I got a DExcom meter. It has saved me many trips to the ER.

    Posted by Ada Ryan |
  11. Apologies for any offence caused, I really didn’t mean to castigate the author herself, or the concept of reaching out to a support network, as infantile or patronising, I think I’ve been misquoted (or potentially expressed myself badly).

    My view was in relation to the overall suggestion of positives outweighing negatives of a serious disease, which is positive thinking (and kudos is I guess due on a personal level for maintaining such a positive view) but to me it’s just not realistic or an eyes open perspective, and is thus damaging. You’re seriously saying that if you had the hypothetical option of a cure (and forced detachment from your D-network) offered tomorrow you wouldn’t take that trade-off? I just don’t believe that.

    As for me not being educated about how good control can mitigate the risks of complications - couldn’t be more wrong. It’s exactly because I recognise the seriousness, and read all the research, that I have the view I have. Every 1% above a genuinely normal a1c (i.e. 4-4.5%, not 4-6%) accounts (roughly) for a doubling of complication risk, so someone at say 7.5% (still better than average) has an 8 times elevated risk over the (superhuman) type 1 who manages ‘normal’. And look up the stats on average lifespan impact - not ALL of those people are idiots who have terrible control.

    My own control is pretty damn good for a type 1 (i’ve never had an a1c above 5.5 post dx) but that’s no insulation and I’ve got early stage retinopathy (after only 5 years and that type of control) - so don’t mean to be a downer folks but diabetes is some serious stuff.

    As I said, apologies for any offence, really no personal criticism intended, just a very different view.

    Posted by BobS |
  12. Anna, the BEST encouragement I have is to find someone else with Type 1 and meet up! Meet in person, talk online, whatever it takes connect with someone! That person can be me!! My email is maryamelarbi@gmail.com. PLEASE don’t hesitate to reach out for a chat! :)

    Dawn, thanks so much for the kind words! That’s exactly the mentality my mom took on right after diagnosis. There are bumps along the road, but the truth is there is no reason diabetes should stop us from anything at all! It’s an extra burden to carry, but still, no reason to ever hold us back!

    Jesse, you’re the best! Miss you tons. I couldn’t have said it any better myself! Truth is, if you haven’t been as fortunate as we’ve been it’s really hard to fully get how important and life changing it is to have that support! That’s why my goal is to at least try and start some of the conversation here! Mucho loveee!! <3

    Meghan, thanks SOOO much! You're the BEST! Couldn't agree more. (Aside from it being scientifically proven) I've totally felt the effects of having that community. I 100% would not be who I am or where I am without it.

    Ada, almost my entire network/Type 1 family has come through Children With Diabetes. If you haven't already, you absolutely must check out their Web site!! It has the best online community, and opportunities to meet and attend conferences so you can get to know everyone in real life as well! :)

    Bob, it’s actually really interesting that you brought up the hypothetical option of a cure, because I have said a number of times in the past that if a cure were to suddenly happen, I’m not sure that I would take it…not now at least. And ESPECIALLY if it meant losing my D-network. Perhaps I didn’t elaborate enough on some of the more serious positives, but diabetes has truly turned into a blessing in disguise. I’m not sure where you live, but if you have the opportunity to attend a Children With Diabetes conference (they have one this summer in Florida and another one in the UK this fall), I HIGHLY recommend it.

    Posted by Maryam |
  13. Well bobs it seams like you are in need of some positive support. I feel terrible for you for working so hard at excellent controll and still having some issues. I myself have had type 1 for over 25 years and so far no complications - minor stuff like fingers get really cold and numb in cold weather, etc etc..teeth issues
    But I do know that alot of the complications has to just do with your heridatory , genetic make up..and regardless of that,. The only thing , we as a group - can do, is be supportive of one another..
    I couldn’t stand to read blogs, articles, etc if they were all so depressing. I love reading uplifting, happy, silly, supportive thungs like this one!
    That is our in,y choice! We’re stuck with this thing until they come up with a cure..so we might as well try to look at the good and not get depressed about it..vpbecause it can be very depressing,,,but that’s not good for anyone

    Posted by Erin |
  14. I am sorry but I have to agree with Bob on this one. I have only had type 1 since August of 2011 at the age of 30. When I was diagnosed I had an A1C of 15 and have since brought it down to 6.5. I already have severe diabetic retinopathy unfortunately. There are some good things that happen when we deal with adversity. But to title the article “Pros and Cons of Type 1″ I found a little odd. There is no pro. It is a brutal disease that even though is “Manageable” it takes a huge amount of time to manage and there is still no real guarantee that you won’t experience major complications. It’s a tough one to deal with, especially because society often views diabetics as fat, lazy people who get what they deserve.(Which we all know is the furthest thing from the truth.)

    Posted by mydiabeticjourney.com |
  15. after reading your posts and thinking on them quite a bit heres what i think

    Bob, i do admire your control and your routine that you follow to keep your numbers so tight, i truly envy you. But like Maryam has said, you must attend one of the conferences. The whole point to having the network is to help us realx in the face of these problems.

    Yes they are serious and can/will probably occur to a large amount of persons with type 1, but you can’t let that scare you. We know it is serious but the social aspect (the d-network as stated above) helps us cope with it and be afraid of the disease.

    My last A1c was 7.4 (shocking maryam i know) which is the highest its ever been since diagnosis. I am not worrying that the 2 points makes me how ever many times more likely to develop complications because its a number that can be changed over and over again, all i have to do is adjust my schedule a tiny bit, with no interruption to my normal flow.

    To the person from mydiabeticjourney.com, there is a possibility you have had it for awhile and not known. Most people only find out in the worst of scenarios after years of ignoring it as nothing more than a headache or a stomach bug. I do have to disagree with your thoughts on there being no “Pro” to diabetes.

    Part of your diabetes care is having a positive outlook even in the worst of times. yes we have diabetes but it could’ve been so much worse. We live in a time where technology is our greatest tool.

    As far as positives about the actual disease, there are none i agree. But this disease brings more than just pain and strife to a person if they look for it. I guarantee if you attend a conference you will see what I mean.

    The social aspect of diabetes means so much more than you can possibly imagine. And while i know it will not cure it, but it helps deal with the pain. Being alone in a fight is the worst thing possible and this network that Maryam and I have established over the last 8 years has led us to make great friends and meet wonderful people around the world who sympathize with our cause and join us in finding a cure.

    As far as the cure for diabetes part, I agree with maryam. Diabetes has become my whole world and i am perfectly fine with it. My friends never dissapproved of me because of it, and the only thing its kept me from doing is eating ice cream when my blood sugar rarely goes to 400.

    The conference is called friends for life for a reason and thats what it’s gotten me. Let me share a small story with you to help you feel how i do.

    I woke up in a cold sweat last night freaking out because i needed to be up in 5 hours to go into the city. I checked my bloodsugar and i was 45. So as per usual i headed into the kitchen to stuff my face with whatever was in the fridge till i stopped sweating( i usually overeat because i dont like going low at night it scares me).

    The point of this is that i wasn’t thinking “hey i’m gunna die if i don’t eat” (when im low i get insatiably hungry). In the back of my mind i know i could die if it goes too low and i dont eat but thats not how my brain is wired. You learn to take things one step at a time and deal with the NOW as opposed to freaking out about all the facts and the LATER things that can happen.

    a simple change in thinking can do sooooo much.

    And to Bob and the other author i mean no foul, i truly wish the best for you two and hope you have the privelage of attending a conference and talking more in person about this with maryam, myself and all the other awesome people at the conference….. if at anytime you want to correspond feel free to

    –Jesse Nagel

    “I have diabetes, diabetes does not have me”

    Posted by jesse nagel |
  16. I am a Diabetic with type one diabetes, and have lived with it for so far 12 years, i really enjoyed this article and how you talked about the pump getting caught on the door nobs haha :D it made me laugh becasue that happens to me on a daily bases haha :D im a senior this year and for one of my hours of school i go and work at the kindergarten. well during that hour i get to help the kids with activities and games; well this one day we decided to play tag; when we started playing this one kid came to tag me and she grabbed my tubbing (on accident) and pulled it to the point that my tubing was stretched soooo far haha, but it never came out and that was so much more painful then it actually coming out. so ya i really enjoyed this :) thanks for the laugh :)

    Posted by WyattEM |
  17. More pros please…

    Posted by Cheyabetic |

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