What Do You Wish They Knew?

William "Lee" DuboisI love my “brother in diabetes” Wil.  He’s a guy who “gets it”, and has a really incredible talent for writing that is a pure joy to read (did you guys read his recent breathtaking “Man vs. Wild” post?).

I had the chance to meet Wil in person last summer, and it was like we had been friends forever, just like I imagined it would be.  Wil is a great guy.

He has written and published two fantastic books on diabetes, which I’ve raved about here before.  If you haven’t read them already, I encourage you to do so.  They are both full of value, insight, visualizations, and Wil’s gift of story telling.

A while back Wil said that he was working on a Type-3 Manual. You know the term Type 3?  They are the friends and family that love us and care for us.  They don’t have diabetes, but because they are so involved with us, they have diabetes.

What topics would you want to make sure were covered in this manual?  Are there any subjects that are not talked about that should be?  Are there subjects that are talked about too much?  Let’s help Wil make this book a winner, and something that really helps those that love us.

When the book is published, I will buy 5 copies and give them away (via random selection) to those that provide some input here.

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17 thoughts on “What Do You Wish They Knew?

  1. I would like to see reassurance for the Type 3 when they have to give a glucagon shot. How to cope when they find their love one unconscious and not panic. That being a diabetic is a marathon, not a sprint and there going to be bad days.

  2. ….that even when we do our best, there are going to be complications, hard times, lows/highs…. their expectations and unspoken accusations of not taking care of ourselves hurt and can leave us angry. We are not perfect in our management – nor would they be, even though they think they would. Life long means life long – not just making a decision here or there and you are finished – so their “easy answers” are not always as easy as they think.
    That we get TIRED of the disease – but it is 24/7. They may be able to “forget” for a while but we cannot. We get tired of fighting insurance companies, etc for what we believe we need..and sometimes it causes us to give up. We just get tired of the fight period…but we do pick up the fight again.
    That it can and sometimes is a struggle and is depressing.
    Don’t make us feel like we have ruined a trip/adventure because our diabetes decided to act up and we did not “catch it” first. (not so much their words only, but body language too) Accusations of “if you had done this” or “that” it would not have happened. Albeit it might be true – we cannot be 100% perfect all the time.
    Say what you are thinking. Do not roll your eyes and shake your head. As an adult – do not treat me like a child. Ask questions and understand what I am going thru instead of assuming and accusing.
    That a Type 1 is different than a Type 2.
    We do know they care…we understand their concern…we are very grateful for them beyond their understanding…they have made a difference in our lives…

  3. As a Type 3 myself, I think that it is important for all of us to find a way to get some form of respite and support. My heart aches every day for my young daughter who has type 1 and Coeliac disease. I know so much more than she does at this stage – sometime, I think too much. Complications scare the crap out of me and I find myself worrying about her and her future 24/7. I don’t sleep properly – what with middle of the night testing etc and the worry. Being able to have some respite (a day or two away on my own) and the support that I get from others (especially other Mums of type 1ers) helps me renew and be able to provide the best care and guidance that I can for my daughter.

  4. I think that type 3’s need to be reminded that a lot of what we do, we do not just for ourselves, but for them. To try to be around for them, or to be in a condition where we can help them when they need help etc.
    I’m sure every diabetic’s #1 complaint about type 3’s is food related, but I think that what type 3’s don’t always realize is that when we’re doing well with our control, it’s not because we’re punishing ourselves, it’s because we understand the trade-off we’re making, and a longer, healthier life with people we love is more important than any short-term indulgence.

  5. That a bloodsugar reading on your meter is more than just a number, and that bolusing does not mean you will fix that number and that it will fix the damage your body is going through, as you try to reach a normal bloodsugar reading.
    How all of that plays so heavy on your every waking moment.

  6. Agreed, that this book on Type 3s will be a great addition to what’s already out there for the Diabetes World. We couldn’t do it without them. Personally, I’d like to see some of the emotional aspects touched on – like how we PWD can often vent our frustrations about issues like Highs or Lows and unwittingly seem to take it out on those Type 3 folks in our lives. They must be strong to put up with us in those ways, in addition to everything else such as dealing with our Highs and Lows, fetching glucose tabs, etc. Can’t wait to get my hands on a copy, once Wil’s book comes out!

  7. My life has been turned upside down. Every time I go to dinner- even if it’s at someones house I have to think ahead about what’s on the menu. I wish I knew before what I know now about healthy eating habits so that I wouldn’t be in this situation.
    I just read a article about a woman who got diagnosed with diabetes and she’s upset about the carb situation. I can understand her confusion and anger. If you want to read the article, you can see it on http://www.powderroomgraffiti.com/shout-it/the-elephant-in-the-diabetics-room.html

  8. I do not feel low sugars. Therefore I hope he puts in the book/manual what it is like when one family member does feel it and another one doesn’t – proof that we are not all the same. They don’t know how freaky it is to check your sugar and then an hour later find that it has taken a nose-dive for no apparent reason, especially when there were no signs. They also don’t know what it is like balancing exercise and proper levels so you don’t go under just because you did a bit of exercise compared to what they can do.
    Look forward to reading the book.

  9. OK- Since my first comment decided to go all NASA on me and get lost in space, I figured I’d try again.
    Scott is right, Wil D is a wonderful man, a great writer, and like Scott, I was lucky enough to meet him last summer too!
    Wil, I’d like the Type 3s in my life (in all our lives) to realize the whole “Diabetes Police” issue.
    Also, when a Type 3 and I get into a heated discussion or disagreement on a subject not related to diabetes, like politics,religion,the type 3 saying there were going to do something and then not doing it,etc.
    I’d appreciate it if they not immediately think that my blood sugar is high and suggest I check it right in the middle of said heated discussion,
    There’s a 97.5 % chance that we are arguing because we really don’t see eye to eye on that particular subject. I find that when I’m winning and or really proving my point, the “What’s your blood sugar?” question most always rears it’s annoying head.
    And when my blood sugar does go deep North and into tundra country, It really upsets me when the type 3’s in my life react with a comment like, “What the hell did you do to blow a 250?” Bad blood sugars happen from time to time and I already feel tremendous guilt about it. Yelling and blaming just makes me feel guilty- and like every other PWD, I have enough diabetes guilt.
    It would be fabulous if certain type 3’s in the life of Kelly K would take my word that I am indeed allowed to eat cupcakes and chocolate on occasion. If my CDE and Endo are fine with with me bolusing for foods that are totally bolus worthy, it would be fantastical if those certain t3’s would stop questioning me every time I decide to indulge.
    I’d like all the t3’s in my life to know that I love and appreciate their support more then I ever could put into words and that I know the stress they feel regarding my diabetes is very real and comes from the heart.
    Kelly K

  10. Where my onsite support is excellent, sometimes I need them to realize that I need to find/see/interact with people who also are dealing 1st hand with the same stuff that I do. Its really easier to feel like someone, when you can have interaction with someone experiencing the same failures and/or successes.
    I do greatly appreciate my family for the support they give me- it helps in my success. As does the relationships with those who are also experiencing diabetes- that is helping me with my failures and/or successes too.
    And another thing- sugar-free does not necessarily mean its worth the carb count in taste. Sometimes that stuff is disgusting. The person who ruined chocolate like that SHOULD BE PUNISHED!

  11. Becoming an adult T1 (18 yrs) carries responsibilities far beyond those of their peers!
    As a T3, one of my struggles has been communication with educational institutions, insurance companies and health care persons regarding my post 18 year old type 1 son. Teach your 18 year old T1 to sign a release of information Every Where he/she goes! And keep a copy because most places will tell you that there is not a release on file and then you can fax them a copy.
    Also, being your T1’s advocate, especially if hospitalized, regardless of their age!

  12. Sometimes, when T3s see a diabetic struggling, they want to take control. It can be a fine line because, though it comes from a place of caring, it can come across like the T3 thinks they know better and if only they had diabetes, — or if they were in charge of that person’s diabetes– they would be much better at handling it. This can be insulting to the person who actually has the condition, 24/7, and is already trying their best and realizes the million minute ways in which this disease impacts daily life. And how it can wear you down.
    I’ve come across this twice from two people I really love. I don’t blame them, because it can hurt to see a loved one suffer or struggle, and feel helpless about it. But to be truly helpful, you can’t control someone else’s diabetes. You can only ask “how can I REALLY help you? What do you need me to do?” and really listen.
    Thank you to all T3s for putting up with us! I love my T3s.

  13. “Are there any subjects that are not talked about that should be?”
    I’d like the T3 folks in my life to know how much I appreciate their concern and patience and understanding when I am having a difficult time. And how much I enjoy that they don’t treat me as if I were a freak or something.
    “Are there subjects that are talked about too much?”
    Food is talked about too much. I’d like the T3 folks to know that when discussions of food come about the only one that a PWD wants to have is really about what’s for dinner, not what he/she should have for dinner. And offer up a slice of cake and allow me to enjoy it!
    I hope you will let us know when this manual is done, I’d love to get a copy 🙂

  14. I wish people had a better understanding of what a low feels like and how scary it can be. As for myself, I don’t “boldly go” as I used to. If I am kayaking or XC skiing or riding my bike, or taking a walk, I don’t feel comfortable really pushing myself like I used to.

  15. I wish they knew that sometimes, even though we make it look so easy, we are still fighting an incurable illness that never gives us a break. That sometimes the crankiness and bad moods are real emotions, not caused by blood sugar fluctuations. And that we really can have the cookie!

  16. well how about a section to talk about being open with your children about the condition? my husband and i felt it was the best choice for us when i had to go on insulin during my fifth pregnancy. i didn’t want them to be scared if they were at home with me when i had an unexpected low. i wanted them to know what to do if that happened and we taught then how to check my blood sugar and where my glucose tablets and emergency sugar sources were. we also told them of my insulin schedule and doses so they feel like they are helping by reminding me to take it. they also understand the importance of my diet and exercise. i know it is a lot for the kids to digest but we have found that by being open with the kids, it helps them be open with us about any fears they have too. and how about a section explaining why family members should get tested, just to be safe? my mother in law had no clue she was diabetic, even though her parents and her son are all diabetic. when she found out, her sugars were in the 600 range and for the next 6 weeks she has to deal with cataracts that the eye Dr wants to fix after she has had her BS under control for six weeks. she takes her medicine and tries to follow the meal plan, but with us being in a small town, there is not a lot of education she can get. and being 60, she is stubborn too lol. and maybe a section for trying to find as much information ( reliable information) as possible, because families of DP need just as much education as we do. and it should include a section on how menu changes should try to be adopted by the whole family. it makes the DP feel less left out, especially when it comes to the holidays. and the importance of water to a diabetic person. thats all i have for now. if i think of anything else, i will post it. will sounds like a great guy. tell him thanks for writing this book.