# When is Sharing about our Disease “Burdensome” to Family Members, and When is it Necessary to Good Communication? **URL:** \ **Category:** Type 1 & LADA\ **Created:** [July 26, 2018, 8:53pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585 "2018-07-26T20:53:48Z")\ **Posts on this page:** 20\ **Page:** 2
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [July 27, 2018, 9:32pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/21 "2018-07-27T21:32:02Z")
Not a chicken… a human being. We have to learn how to be nicer to ourselves when fighting our way through things. You’ve been through some things, woman. You’re a frickin warrior. ---
**Author:** ![Jattzl](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/jattzl/32/7851_2.png) [@Jattzl](https://forum.fudiabetes.org/u/Jattzl)\ **Post date:** [July 27, 2018, 9:38pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/22 "2018-07-27T21:38:40Z")
I should have added this 😆 as my kids and I got quite a kick out of it later. It’s worse than running out of the room when I tried to go to a singles dating meet-up 🤦🏻‍♀️😁 ---
**Author:** ![T1Allison](https://avatars.discourse-cdn.com/v4/letter/t/c77e96/32.png) [@T1Allison](https://forum.fudiabetes.org/u/T1Allison)\ **Post date:** [July 27, 2018, 10:19pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/23 "2018-07-27T22:19:32Z")
> [@Chris](#): > > The common denominator with diabetes is that like heart disease often makes people feel isolated. @Jattzl and others, my husband just did a work trip w a guy who’s doing the Keto Diet to crash lose weight before going to the beach. He told my husband, “You’d never guess how changing your diet can really impact things socially.” My husband said, “I might have an idea. My wife has been married into my family for 12 years and my parents still look at her sideways at most get togethers.” So if a voluntary Keto Diet can make someone feel isolated, just imagine the reality for some of us here! ---
**Author:** ![TravelingOn](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/travelingon/32/1583_2.png) [@TravelingOn](https://forum.fudiabetes.org/u/TravelingOn)\ **Post date:** [July 27, 2018, 11:58pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/24 "2018-07-27T23:58:57Z")
@Chris I think you’ve put it best I’ve seen in a long, long time…the isolation leads to a whole host of issues! And having a safe place to share is really important. That being said, I sure wish people in real life would be a tad more understanding about people who have differences, whatever those may be. While no one wants complications, or to be different, we are ALL dealing with different issues! And while I haven’t been there with @Jattzl or anyone while their families or friends are being silly about health concerns, we can certainly relate. I’m all for being open and honest about health issues. Not to burden. Not to demand. Not to scare. But to **normalize** the fact that health stuff happens to all of us. I often wonder how people deal with all of their hidden things - like if EH had taken his mother’s advice and hidden in the toilet stall to inject before every meal for the rest of his life! He wouldn’t have met other T1D’s in restaurants and out-and-about who helped to normalize that he was living with diabetes, not hiding from it in a toilet stall being ashamed of it. > [@Jattzl](#): > > sorry veering off subject Oh, you’ll have to get in line to win the off-subject crown! 👑 We are all royalty at that here at FUD! 😂 ---
**Author:** ![T1Allison](https://avatars.discourse-cdn.com/v4/letter/t/c77e96/32.png) [@T1Allison](https://forum.fudiabetes.org/u/T1Allison)\ **Post date:** [July 28, 2018, 12:08am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/25 "2018-07-28T00:08:45Z")
@TravelingOn, amen to all of that. A twelve year old boy came up to me on the beach two years ago on vacation and pointed to his pod bc he could see mine. He said, “You have to come meet my mom and talk to her. She’d like that.” So I did. And she was awesome. And we gabbed for 45 minutes. She was telling me about how isolating T1D can be and how none of her friends get it. She said before she came on vacation her best friend had just told her, “I don’t understand what you’re so upset about. It’s not like your kid has cancer.” My heart broke for her. That’s a tough thing to hear from what is supposed to be a support system. I don’t say this to be a downer. I say this to say to @Jattzl and everyone else that the land of FUD is an awesome place full of tons of experiences and viewpoints and commiserating and solutions and support. With some of the things I have put out in the open on my “‘New’ to Omnipod” thread and people are still talking to me here? This place is great. So if there is something you want to have heard, you’re in the right spot from every indication I have received in my short time here so far. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [July 28, 2018, 1:09am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/26 "2018-07-28T01:09:35Z")
> [@TravelingOn](#): > > Oh, you’ll have to get in line to win the off-subject crown! 👑 We are all royalty at that here at FUD! 😂 Really? She apologized for off subject?? 🤔 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [July 28, 2018, 1:12am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/27 "2018-07-28T01:12:20Z")
> [@T1Allison](#): > > With some of the things I have put out in the open on my “‘New’ to Omnipod” thread and people are still talking to me here? Not just still talking to you but talking to you with a new level of respect. Warriors… I keep thinking about the warriors around here who just keep marching forward. ---
**Author:** ![Jattzl](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/jattzl/32/7851_2.png) [@Jattzl](https://forum.fudiabetes.org/u/Jattzl)\ **Post date:** [July 28, 2018, 1:32am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/28 "2018-07-28T01:32:55Z")
@T1Allison Not a downer at all! It confirms that we are all in this together. Many times I’ve heard the “be glad it’s not cancer” comment. I know I am not the only one which is another reason why I hesitate to share. But as @Chris commented on depression and isolation, I also know it is not healthy to isolate. So I’m fighting off the pull to go deeper into the isolation and the “stop whining” inner talk and being grateful for the support. Thanks everyone. ---
**Author:** ![T1Allison](https://avatars.discourse-cdn.com/v4/letter/t/c77e96/32.png) [@T1Allison](https://forum.fudiabetes.org/u/T1Allison)\ **Post date:** [July 28, 2018, 1:51am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/29 "2018-07-28T01:51:58Z")
> [@Nickyghaleb](#): > > Not just still talking to you but talking to you with a new level of respect. Awww. Thank you! So much. Never anticipated that that bathroom helmet story would result in additional respect, LOL!!! ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [July 28, 2018, 3:59am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/30 "2018-07-28T03:59:35Z")
Life is funny like that. Before that you were just T1Allison. Now you’re T1Allison, Previous Wearer of Bathroom Helmet and Otherwise All Around Badass. Actually, you were T1Allison, Hormone Whisperer before. I just have even more respect for you now. 💕 ---
**Author:** ![Beacher](https://avatars.discourse-cdn.com/v4/letter/b/a6a055/32.png) [@Beacher](https://forum.fudiabetes.org/u/Beacher)\ **Post date:** [August 9, 2018, 5:31pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/31 "2018-08-09T17:31:12Z")
> [@](#): > > "Burdensome" … relentless in its plight. … keep up the fight … drag others into our mess When I read this two weeks ago, I thought my initial reaction was knee-jerky and maybe mixed up with something personal, but two more weeks of perfectly relaxing holiday have not changed it, so … It seems odd to me, and counter-productive, if not even unhealthy, to frame one’s diabetes, to frame an integral part of oneself, in this language of confrontation and hostility. Sure, diabetes can be damn frustrating at times, and a challenge, and exhausting, but why the whole war mentality? I know it sounds all touchy-feely, but in life you usually get back what you put out. If you put out confrontation/antagonism/fear about your diabetes, it will be reflected back. So maybe the starting point here isn’t “How much is it appropriate to share with family members?” but “Why do I feel so hostile towards my diabetes?” And when a person has answered that, and hopefully has a more neutral relationship with their disease, maybe sharing with family members is no longer seen as a problem. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 9, 2018, 5:38pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/32 "2018-08-09T17:38:27Z")
I’m glad you came back around. I wanted to respond in here, but I haven’t found the time. I’ll go back and read though and check back in. I do like the direction in which you’ve taken the original question. ---
**Author:** ![T1Allison](https://avatars.discourse-cdn.com/v4/letter/t/c77e96/32.png) [@T1Allison](https://forum.fudiabetes.org/u/T1Allison)\ **Post date:** [August 9, 2018, 7:49pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/33 "2018-08-09T19:49:30Z")
> [@Beacher](#): > > So maybe the starting point here isn’t “How much is it appropriate to share with family members?” but “Why do I feel so hostile towards my diabetes?” Interesting points. I like the framing of your thoughts. For me, my T1D situation (which is currently complication-free) feels like a boat with a leak in it. I have this awesome boat, except for the leak in it. My feelings towards the leak depend on my current success in keeping water bailed out of the boat. If I’m ahead of the curve and keeping buoyant, I feel more neutral towards it because it is being managed. If I’m bailing furiously and can’t keep up and am starting to sink, then it’s going to be a decidedly messier mindset given that there’s not much mental bandwidth left to feel okay about it while furiously bailing water out. It is cyclical for me. A lot of what I’ve read from @Nickyghaleb matches my mental state, and @Jen, too. Sometimes I’m feeling really okay about it. Sometimes I’m not. And I don’t even have complications at this stage to worry about. Last night was a not okay night. But I’ve had enough wins lately that I could approach it with more diplomacy than when all of my resources have been run down. My personal struggle right now is maintaining good bg control while ensuring I’m getting enough calories each day. That’s been a lot harder than I’d anticipated since I realized that I’d accidentally lost a fairly significant amount of weight. Once I can get my weight back on (and I’ve been working on this for four months without measurable progress), I’ll feel like I have more resources for flexibility. I.E. On a super spontaneous day with lots of changing activity levels, it will be okay to eat lighter for better bg control through the activities without worrying about missing those calories for the day. But until that set of resources gets replenished and dealt with, I’m still feeling like I’m on a tightrope and having to manage more than is always reasonably possible. Anyway, it’s cyclical for me. And I think that’s pretty normal. Even if it isn’t, it is my version of normal for how I think and feel about things. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 10, 2018, 11:39pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/34 "2018-08-10T23:39:54Z")
> [@docslotnick](#): > > Spouses, parents, significant others–sure. They need to know so they can assist you when necessary. Children, hell no! Hi. 🙂 I know I posted this two weeks ago, but I am just now getting around to responding. This was the first one I wanted to come back to because I’m afraid I miscommunicated… In no way do I want to make my children responsible for me. I can see how it maybe sounded like that. In the post, I was actually referring to a friend’s situation where she shields her children from her disease, her grown children, and it leaves her very isolated. I don’t think adult children are the same as young children. I think adult children do not need to be shielded. I think about my relationship with my own mom, and I HATE the idea of her choosing protecting me over getting the help and attention she needs. I don’t need to be protected. When there are things I can do to help, I need to step up and help. Occasionally my mom shares the fact she’s had a suicidal thought… or three, and my mind always goes to the same thought: _how did we get HERE?_ I didn’t know she was hurting. I didn’t know she was alone. I can’t help if I don’t know there’s a problem. I am not her child, and I can’t speak for her children, but I can say I want to know from my own mother when things aren’t good. It’s _not_ a burden. That’s my point. And she’s not alone. But she has to let me know when she needs more… My own kids, they’re off the hook. I shield them whenever I can. When I can’t, I follow up with an exhibition of strength, energy, and health (so I fake it). 🙂 I’m kidding, but I do try to remind my children that I’m good, and that I can still beat them at most anything. 😃 So I’m not sure that we disagree? Either way, I enjoy a good discussion and always appreciate hearing another perspective. ---
**Author:** ![docslotnick](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/docslotnick/32/75_2.png) [@docslotnick](https://forum.fudiabetes.org/u/docslotnick)\ **Post date:** [August 10, 2018, 11:55pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/35 "2018-08-10T23:55:22Z")
@Nickyghaleb I think we said the same thing. Except, as usual, you are quite a bit more thoughtful and eloquent. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 10, 2018, 11:55pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/36 "2018-08-10T23:55:30Z")
> [@Pianoplayer7008](#): > > I am struggling immensely with how much my health issues are affecting daily life right now - I’m laid out on the couch a lot I’m late to some responses and hope you’re better now. I’m very sorry to hear you say this… > [@Pianoplayer7008](#): > > The times she has pushed through and hidden her pain/suffering so as not to burden us with it have been the times I’ve been most upset with her, because it truly is unfair to us. This is EXACTLY how I feel. I don’t want to make it about me, but I also want her to give me a chance. > [@Pianoplayer7008](#): > > I’ve never really thought about that and related it to my children and me…guess I’ll need to give that some thought. Hmm. I think to lie or to avoid can sometimes cause bigger concern and fear than transparency. > [@Pianoplayer7008](#): > > The only real effect I’ve seen from my daughter is that now she wants me to check her blood sugar every time she sees me checking mine. 😆 It’s pretty cut and dry around here, with diabetes management. As you said, I need to test, I test. I need to change my set, I go take care of it. I don’t need their attention, and for the most part, I don’t get it. 😃 Funny about your little girl though… My 5 year old and 7 year old actually asked me if I could test their sugar in exchange for money to buy a video game. Kind of a scary moment… realizing your kids would be willing to donate their blood for game coins. Not my proudest moment either. 😃 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 11, 2018, 12:07am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/37 "2018-08-11T00:07:09Z")
> [@Katers87](#): > > As long as it’s stated in a matter-of-fact, this is what needs to be done sort of way then I don’t think it’d be too scary. This is a very important piece, yes. [quote=“Katers87, post:6, topic:4585”] I’m not a parent though, so my opinion probably doesn’t mean much in that arena. [/quote] And yet, you’re spot on. (I say because you are somewhat in agreement…) 😃 > [@Katers87](#): > > I think forums like this one can be really helpful for this type of stuff. I love reading about ways other people solve D problems. It’s incredibly cathartic, and it can make me feel powerful and more in control of my D. This forum might be more helpful than anything her family can give her! Agreed. I have a very loving family, but I kept my disease from them for 14 years. It was a pretty dark 14 years. (8 probably… for the first 6 I was without a care in the world). I couldn’t explain to them all I would need to in order for them to understand, and as a result, there was isolation. When my own mom started taking an interest, it nearly broke me. I can’t explain it any more than that. It was a flood gate. I have since found what I need in this forum as well as in my Facebook group. Everyday conversation about the disease. As much, or as little, as I want. It’s changed my outlook. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 11, 2018, 12:09am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/38 "2018-08-11T00:09:21Z")
> [@T1Allison](#): > > Joining FUD has given me the best peer-to-peer support that has exceeded what I ever expected. I’ve been a bit hard on @Eric and @ClaudnDaye in some discussions, but that’s my passionate personality. Everyone’s comments and interaction…and underlying caring and understanding…has meant the world to me. Yeah, this place isn’t all that bad. 😃 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 11, 2018, 12:14am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/39 "2018-08-11T00:14:04Z")
> [@T1Allison](#): > > Starting out as a D and not knowing other diabetics, the quality of understanding from family members was weighted more. Now, it is still nice to have, but for where I’m at in my own physical and emotional health, it is still important but not _as_ important. Absolutely. I wonder what a difference it would’ve been to have had this all along. > [@T1Allison](#): > > So I definitely am in the “share” category here. But only to the extent that it helps things for yourself or in those specific relationships. Good point. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 11, 2018, 12:40am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/40 "2018-08-11T00:40:54Z")
If i had just read down a little further, i could’ve saved myself that last response. My own children are very perceptive. I can’t pretend there’s not a problem when there is, but i can certainly mute it for their benefit. And i do. [Previous page](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585.md?page=1) [Next page](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585.md?page=3)