# 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:** 3
**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, 12:45am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/41 "2018-08-11T00:45:35Z")
> [@Jattzl](#): > > I’m fighting a heavy depression right now so that causes me to isolate and not be as involved or responsive. 🙄 Speaking of which, where you at? 😃 > [@Jattzl](#): > > It is frustrating and maddening for me And I don’t want to add to that. Just want you to know there are people out there (or that I’m out here) who are good for a chat. Or rant, vent, cry, laugh. I can’t promise what I’m bringing 🙄 Dang. Mid-response, and my kid is calling for me… I’ll be right back. Hopefully. 😃 ---
**Author:** ![Pianoplayer7008](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/pianoplayer7008/32/1507_2.png) [@Pianoplayer7008](https://forum.fudiabetes.org/u/Pianoplayer7008)\ **Post date:** [August 12, 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/4585/42 "2018-08-12T00:09:12Z")
> [@Nickyghaleb](#): > > I’m late to some responses and hope you’re better now. I’m very sorry to hear you say this… Thank you for that! I was doing better last week, but…I’m writing this from my bed. 😆 We’re getting somewhere on connecting symptoms to lab results, though, so hopefully I will have answers and a way to address things soon. ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 12, 2018, 3:23am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/43 "2018-08-12T03:23:36Z")
> [@Pianoplayer7008](#): > > We’re getting somewhere on connecting symptoms to lab results, though, so hopefully I will have answers and a way to address things soon. That’s frustrating work. > [@Pianoplayer7008](#): > > I’m writing this from my bed. And that’s a frustrating place to be doing it. I hope you get it figured out, and I hope you’re up and about soon. 🤞 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 13, 2018, 3:50pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/44 "2018-08-13T15:50:07Z")
@docslotnick, interesting… I thought the same but thought YOU were just a bit more thoughtful and eloquent. As usual. 😁 Also a little bit more to the point… you get it done quicker. 🙂 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 13, 2018, 4:07pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/45 "2018-08-13T16:07:00Z")
> [@Jattzl](#): > > So I’m fighting off the pull to go deeper into the isolation and the “stop whining” inner talk How’s that fight going, @Jattzl??? How’s everything?? ---
**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:** [August 13, 2018, 4:37pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/46 "2018-08-13T16:37:16Z")
Hi Nicky! Still fighting so that’s a good thing right? I’m okay, thank you for checking on me! How are you doing? ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 13, 2018, 4:56pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/47 "2018-08-13T16:56:13Z")
> [@Jattzl](#): > > soooo if I’m having trouble helping myself sadly, there is not much others can do to help. Okay. I’m back. And I’m here to challenge your analysis. Since the time I have met you, you have joined 4 different support groups. Technically 3… I met you in that first cesspool that was disguised as a support group. Anyway… I’m challenging your definition of “helping yourself”. There are people in this world who are natural born victims. It’s a mentality. They can’t help themselves. They can’t accept help. You are not of the victim mentality. You are struggling under the weight of your conditions, treatments, and symptoms. That weight is immense, and your general outlook on life has taken a big hit. When our outlook feels dismal, it can be hard to get up and brush our teeth. You don’t need someone to brush your teeth, you need someone to give you a reason to brush your own. Ive been you, Jattzl, and I’ve been you with 10% of what you are actually living with. You are not of a victim mentality, you are living with very difficult conditions. You ARE helping yourself, to the very best of your ability at this time, and you deserve having your children contribute. You can’t make them, but you can allow them. You can take the risk and let them know you _need_ something and give them the chance. If they don’t step up, then we start a new thread around here about dealing with unresponsive family. I could certainly find something to contribute there. I don’t think I’ve successfully challenged anything with this… I’m just trying to knock a little sense into you. 🤨 > [@Jattzl](#): > > People say you need to ask for help which led to the issue of burdening others. And maybe you DON’T need to start with asking for help. I understand that feeling of not wanting to… I HATE asking for help. I prefer to do everything for myself even to the point of where it crosses into harmful behavior. I get that. Maybe you can start with _sharing_ some of your challenges or difficulties… some of your fears… some of your _victories_. It doesn’t have to be a negative share. It’s just a way to let them in. You asked me about this… about pushing away family. It’s never too late to take steps to let people back in. > [@Jattzl](#): > > When I do share the daily pain and frustration I think they have a feeling of helplessness and their own fears And in choosing silence, fears fester and grow. Trust me, we don’t stop worrying about our parents when they are silent. I don’t. I worry more. Sometimes in an exchange, a check-in of sorts, things can come out that are scary to hear, but that’s my opportunity to talk through it. To clarify, dispel, quantify, demystify (I’ve got my thesaurus open)… to work through concerns on BOTH ends. Again, maybe your children wouldn’t or couldn’t, but I’m not sure how you would know. From what I understand, you’re stuck in the stage where you are shielding them. All I’m saying is that maybe you’ve gotta make this STAGE the focus of your efforts. This is hard work I’m talking about, as I’m sure you know, but you DO have a support group (3 maybe?) that are there to fall back on. Bounce ideas off of them. Maybe have a good rant. > [@Jattzl](#): > > But short of leaning on them for those times I don’t like to burden them. So they’ve been there for you whenever you’ve allowed them to be. They’ve stopped where you’ve stopped. I’m also running dangerously on a lot of assumptions, but this is what I’ve gathered from everything we’ve talked about and all you’ve shared. All those other people you may be right about. You’ve also never described these other people as being… > [@Jattzl](#): > > caring, loving people who have been through the thick and thin of all this with me. I just want you to know you have people thinking about you. Well, at the absolute VERY least, you have one. Thinking about you, worried about you, hoping you’re well. I doubt I’m the only one… 💕💕💕 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 13, 2018, 5:04pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/48 "2018-08-13T17:04:18Z")
Oh hello! 😁 I just sent you the LONGEST response in all of internet history, but I had good reason. Reasons. I had a lot I wanted to say, and I had the time. I’m sitting in a waiting room, and estimated wait time is “eternity”. Anyway, you don’t need to respond to any of it. You don’t even need to read it. Strike that. You need to read it, but you don’t need to respond OR agree. Just wanted to reach out and say hello… and 1,346 other words. 😁 ---
**Author:** ![Nickyghaleb](https://avatars.discourse-cdn.com/v4/letter/n/5f8ce5/32.png) [@Nickyghaleb](https://forum.fudiabetes.org/u/Nickyghaleb)\ **Post date:** [August 13, 2018, 5:39pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/49 "2018-08-13T17:39:45Z")
> [@TravelingOn](#): > > 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. And it’s not enough to just talk about it. We actually have to do it. I have bladder problems (maybe a neuropathy issue or maybe a result of cysts), but I’m not a big fan of talking about them. I get shy even answering questions at the doctor’s office. That’s just ridiculous. My mom, who is brave and a fighter beyond words (and, as a result, never asks for help @Jattzl), has recently experienced a prolapse of EVERYTHiNG — bladder, uterus and rectum. She didn’t tell anyone for a week, but we could tell something was wrong. Finally, she was forced to start talking, and once she did. She decided she was going to fight the urge to hide it. The woman is a riot and has definitely overcome any reticence. My poor husband has to hear updates after every appointment. It’s good for him though. It’s good for all of us. 🙂 ---
**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:** [August 13, 2018, 5:40pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/50 "2018-08-13T17:40:29Z")
You always make me smile! I will read it! Lots gets done at doctor waiting rooms 😝 ---
**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:** [August 13, 2018, 5:51pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/51 "2018-08-13T17:51:48Z")
Hang on getting to computer where I can respond. This phone is just too dang small for my eyes and fingers 🧐 ---
**Author:** ![Thomas](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/thomas/32/1719_2.png) [@Thomas](https://forum.fudiabetes.org/u/Thomas)\ **Post date:** [August 13, 2018, 5:55pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/52 "2018-08-13T17:55:13Z")
> [@Jattzl](#): > > This phone is just too dang small for my eyes and fingers lol - So funny. That is me. ---
**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:** [August 13, 2018, 5:58pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/53 "2018-08-13T17:58:53Z")
I feel like I spend all day squinting and hunching over it with bent thumbs and of course then the eyeballs dry out and thumbs cramp up. I’m sharing Nicky 😁 ---
**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:** [August 13, 2018, 6:32pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/54 "2018-08-13T18:32:56Z")
> [@Nickyghaleb](#): > > So they’ve been there for you whenever you’ve allowed them to be. They’ve stopped where you’ve stopped. This applies to my children for all the reasons we talked about. I definitely struggle with the “shielding” mode. And we have a weekly share brunch that I have gotten better at opening up. I actually think it’s more the asking for help thing. I don’t think I ask for help unless it is a ride to a procedure which they are always there to do. It is me who won’t ask and to the point of self harm like you said. My parents said I have been like this pre-diabetes as a toddler so it will probably be a life long thing I need to deal with. Some of the examples are really scary. FINALLY, through insistence from my paramedic nephew, I will call 911 now. That was a big important step living alone and at this stage in the disease and life. ---
**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:** [August 13, 2018, 6:36pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/55 "2018-08-13T18:36:01Z")
> [@Nickyghaleb](#): > > My mom, who is brave and a fighter beyond words (and, as a result, never asks for help @Jattzl), has recently experienced a prolapse of EVERYTHiNG — bladder, uterus and rectum. She didn’t tell anyone for a week, but we could tell something was wrong. Finally, she was forced to start talking, and once she did. She decided she was going to fight the urge to hide it. She sounds a lot like me. Also, I know she has always been there for you and that’s how I am with my kids so we probably are a lot alike. ---
**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:** [August 13, 2018, 6:46pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/56 "2018-08-13T18:46:44Z")
This weekend my daughters and I talked about - **Diabetic Cheiroarthopathy** - “syndrome that comprises conditions such as carpal tunnel syndrome, adhesive capsulitis, flexor tenosynovitis (commonly referred to as trigger finger), and Dupuytren’s contracture. Patients may present with stiffening and decreased flexibility of the connective tissues of shoulder joints, fingers, knees, and hips (although hips are not as well recognized), and increased thickening of structures in the wrist. connective tissues surrounding the joints have become thicker and less flexible over time. This leads to conditions that can have a negative impact on quality of life, including trigger fingers, carpal tunnel syndrome, and adhesive capsulitis of the shoulder.” Learning this term was big for me! I have them all would always get frustrated and overwhelmed to the point of tears when at a new doctor or hospital and had to list symptoms! I had that “they think I’m crazy feeling”. Now it’s just Diabetic Cheiroarthopathy! BAM done (with that one anyway). Let them look it up haha ---
**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:** [August 13, 2018, 6:50pm UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/57 "2018-08-13T18:50:24Z")
> [@Nickyghaleb](#): > > the LONGEST response in all of internet history I think I would need to bet that I’ve seen longer from you! 😉😘 ---
**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:** [August 14, 2018, 1:25am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/58 "2018-08-14T01:25:45Z")
> [@Jattzl](#): > > Diabetic Cheiroarthopathy Oh my goodness. My partner has a few of those and other related conditions (Peyronie’s disease - related to Dupuytren’s contracture, which he doesn’t have). For years I’ve insisted they’re related to diabetes and we don’t always have specialists believe that fact. But here you are saying there’s a term for this! Look at you sharing, and making my day better. Thank you! ---
**Author:** ![Millz](https://yyz2.discourse-cdn.com/flex030/user_avatar/forum.fudiabetes.org/millz/32/12204_2.png) [@Millz](https://forum.fudiabetes.org/u/Millz)\ **Post date:** [August 14, 2018, 1:44am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/59 "2018-08-14T01:44:42Z")
> [@Jattzl](#): > > that “group that shall not be named” Oy, there is another group referred to like that!? 😳 😂 That being said @Jattzl, you’ve landed amongst a group of folks who are uniquely capable of truly understanding all facets of what you shared. 🌻 I’m so very glad you’re here. I sometimes think about what it will be like living with D when I’m older (but I try not to dwell on it yet…I’m 58). ---
**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:** [August 14, 2018, 1:54am UTC](https://forum.fudiabetes.org/t/when-is-sharing-about-our-disease-burdensome-to-family-members-and-when-is-it-necessary-to-good-communication/4585/60 "2018-08-14T01:54:21Z")
Yes! They say it is under diagnosed. Mostly in long term T1. Is sometimes confused with arthritis. But there’s many medical institutes with info including mayo and nih. [https://www.consultant360.com/exclusives/diabetic-cheiroarthropathy-musculoskeletal-complication-clinicians-may-be-overlooking](https://www.consultant360.com/exclusives/diabetic-cheiroarthropathy-musculoskeletal-complication-clinicians-may-be-overlooking) [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=2) [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=4)