When is Sharing about our Disease “Burdensome” to Family Members, and When is it Necessary to Good Communication?

Type 1 & LADA
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This is not another post and run. I know I have “loose threads” :wink: around here to tend to still, but I’m worried about a friend and don’t know what else to do for her.

This can be a lonely disease, as all can be I’m sure, but this one really thrives during depression, neglect, and denial and is relentless in its plight. It requires a person to be healthy enough, mentally and physically, to keep up the fight day to day because every day spent ignoring it is a day giving it strength. This is my take anyway, and maybe I’ve got THIS all wrong, too.

I know there are family threads around here, but I’m not sure if this angle has been covered, and I’d like to get discussion going so my friend can participate or observe on whatever level she cares to. My question is not about our family’s role or response, because truly we could be here all year, but about how much is appropriate to share with them. At what point is sharing our concerns, our daily struggles, our dreams, our gripes, fears, pain, etc. wrong? At what point is it our responsibility to move forward in it and not to drag others into our mess?

I had a therapist years ago tell me not to share my disease with my family. I had a 9 year old son on the spectrum who was obsessed with death and was overly concerned with my own demise, a 3 year old, and a baby in tote. I was sick all of the time. My therapist’s advice was when I felt like I was “about to get sick” (hypo or hyper), to go into the other room and close the door. I think it was absolutely, 100% lousy advice, but it just confirms the thinking… that our disease is our disease, and that we should refrain from worrying others.

So to my friend, I say whole-heartedly, “burden them”. How ridiculous to hide this from your adult children. They won’t know to ask if you don’t tell. I disagree with every ounce of me that it’s not their business. If they don’t know your disease, they don’t know you. I understand not everyone’s family wants to know, but in this case, you haven’t given them the chance to inquire. That’s my vote anyway. And if it’s really too much to do, then let us have it. You’ve got two groups to complain to all day long. I don’t think carrying it all alone is a good long-term strategy…

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Nope. Not wrong. Takes a massive quantity of energy to fight the fight.

Wow! That’s potentially dangerous and patently ridiculous. You’re not “getting sick” you’re living your life. LIVING IT!

(Hehe. I always want to swear a lot when I reply to your posts @Nickyghaleb! Hahahahha!)

I adore therapy, literally gets me through my week. But shrinks are like shoes, you’ve gotta try on a few pair before you find one who’s a good fit.

I’m sorry you were told that. I’m all in for full transparency about what living with a medical condition is like. I don’t have my own children. I do have a lot of experience with other people’s children and find that they are really more capable than adults give them credit for. :muscle: :smile:

And ADULT CHILDREN?!? Gah! Yes! Tell away! I’m literally sitting with my T2D mom in an eye doctor’s office for her diabetic eye appointment and all I can think is: this would have been SO much easier had I known about the health stuff way before now. Way easier if I’d realized how bad it was before my mom took a tumble and needed wound care. :confounded:

It’s a full time job to care for diabetes. And while not every one has a spouse, friend or parent to help them at home, there is room to share and get help here at FUD.

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Well said!

I have a lot of thoughts about this in regards to chronic illnesses in general. I was just talking to my mom about it this past week, in fact. 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, and if I’m in my kids’ rooms, I’m generally laying back in a chair or against a wall. I’m not very able right now, and they’re getting to see everything. I was asking my mom how she managed with us (she had similar health issues, and she had seven children to my two!). Somehow, I don’t recall much of her having to lie down and rest all the time, but apparently, she did. I knew about her health issues, understanding them as much as I could at various ages and stages, but obviously, it didn’t traumatize or damage me for her to be transparent about her health and have to take time to address those issues. 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. Like you said, how will they know to ask if she doesn’t tell them; same for my mom and us - how will we know to help her and pray for her if we don’t even know anything is going on? I want to know. 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.

All that to say, though, I hardly ever keep anything from my children, even the things I technically could. If my blood sugar’s low and I have to lie down, I tell them my blood sugar’s low, and I have to lie down. Same with high blood sugar, or when I have to stop playing toys to go dose some insulin, etc. 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. :laughing:

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I have that effect on people. That’s probably not good.

I am a firm believer in it. It’s why I was there. Too much going on in my life, and I was looking for someone to help me sort it out. Or to help me help MYSELF sort it out. Then he told me to close the door and keep my disease to myself. I dont agree.

This is what I’d like her to hear. This is my stance.

Sorry to hear that! Is she okay??

This is also the part I want her to see. I feel this way about my own mom. Of course I don’t want her to be sick, but my not knowing doesn’t change whether or not she IS sick. It changes whether or not I am able to participate. Whether or not I’m able to help. Every now and then my mom slips a big one past me… a new diagnosis, some kind of trouble, whatever… and when I DO find out, all I can think is why wouldn’t you trust me? Why wouldn’t you let me help?

I hoped I wasn’t wrong about this, and I didn’t think I was wrong about this. I’d like to help her get connected. If family is a complicated arrangement, one could start here. One could build here and bridge to there. Maybe. Or just hang out here, forget the bridges, and cut loose. :slight_smile:

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Spouses, parents, significant others–sure. They need to know so they can assist you when necessary. Children, hell no!

Children find out. They see you struggle and not make a big deal of it and they learn at their own pace. Or you can make an issue of it and make them neurotic.

My two boys, men now, saw much of the ugliness-driving through the mountains singing I Will Survive, running away down the street yelling. They knew this was not normal behavior and they were curious enough to find out why. This made it MY life, not THEIRS. By the time they were nine or ten they could offer me reasonable assistance if needed. As men today they can still offer me assistance but they can see that the disease does not consume me and they are not concerned that anything is imminently wrong.

I think it’s wrong to make your children feel so responsible for you. Best to let them learn the basics from your spouse or on their own. Kids are smarter than we give them credit for. And everything is about them anyways.

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I think the answer is so complicated. I find that I gauge how much I should share based on the response of the significant people in my life. My mother can’t cope if I talk about it with her. She seems to extrapolate my struggles into this big thing, creating this perception that my life is only about D. I think it’s likely because she can’t really connect with most other parts of my life.

I don’t like it when people define me by my diabetes. It’s more important to me that others see that as a mere part of my life than that I can rely on them for this form of emotional support. In reality, I’ve found that they’re not really capable of providing the kind of support I want anyway. They don’t have any direct experience. I could talk with my younger sister about it, but I want her, more than anyone, to see that diabetes hasn’t impacted my ability to do what I want with my life because I’m desperately hoping she’ll adopt a similar outlook eventually.

I suppose that I expect my current/past boyfriends to be supportive in the small (but big!) ways such as waking me up if I don’t hear my Dex alarms (though honestly, they’re probably just as eager to stop hearing the alarms!). I don’t complain to them though. It doesn’t seem to help me much, and as I said earlier, it seems to make diabetes a bigger part of my life than I want it to be. However, I’ve asked my current bf to stop for a moment so I can test my blood when we’re walking somewhere and my Dex seems off. I’ve told him a bit about why I might use Humalog vs. Afrezza to dose for a meal (timing of insulin). I’ve told him more than past boyfriends because he seems to respond relatively well to stuff like that. I think the amount of sharing that is appropriate is very dependent on how others respond.

I don’t plan on having children, but if I did, I’d probably adopt an outlook similar to the one I have with my younger sister. I couldn’t possibly expect them to provide they type of emotional support I might want. However, I don’t think it’d be unhealthy to talk about how we take care of ourselves. 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. I’m not a parent though, so my opinion probably doesn’t mean much in that arena.

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!

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I think for me there is a difference between getting real D understanding and getting general support from non-D’s.

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.

For support, I think it is important to me for the quality of the relationships with those individuals that I have…but it is not as crucial to me at this juncture for the quality of my own self-care. What I mean is that whether my aunt or uncle or whomever understands or doesn’t, it won’t affect me individually anymore. But it will probably have bearing on how close we are since this is a pretty huge part of my life.

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. I say that, though, as someone who has always had an invested and amazingly supportive husband. My parents and siblings have always cared but didn’t always understand. Now they understand MUCH better and that does mean a lot. They’ve come and walked with my JDRF team and come to JDRF T1D Summits with me and that was pretty stinkin’ huge. For being nervous in new situations around new people, that was a huge gesture on their part. But they didn’t even think twice about it. It was a given that they were going to do it.

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. For some reason, it just won’t ever sink in to some people in my life and it does lead to a bit of a wall. I can’t make them want to understand. I can’t make them not take it personally that I’m not eating something they’ve made that I’ve never eaten…yet they continue to make it and get frustrated that I’m not eating it. I’ve just had to meet people where they’re at…and that’s not a terrible thing to learn in life.

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What do you consider “responsible for you”? I thought the OP was about just sharing struggles and information, not making your young children responsible for your care. I don’t think there’s any harm in being open with your children about some aspects - I do try to hide that I’m feeling like I’m dying when I’m low, for example, and have never told my kids I could die because of lows/highs. I’m fairly open with my siblings and my parents, too, and more so with them because they are mature enough to handle it. My husband, especially being an RN, gets to hear everything. :laughing:

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Your children just naturally feel some responsibility for their parents. After all, you’re in their universe and they feel like they can control the universe :blush:.

If you burden them with your problem, then by golly it’s their responsibility to fix it!

A child outgrows this feeling at about 7-9. When they reach this level of maturity they can begin to discover what your problem is without feeling responsibility for it. They then will figure out quite easily when and what type of help you may need.

Until then I think it’s pretty important to make things look AOK to them, and not to burden them with YOUR problem.

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Thank you to my sweet, caring friend, @Nickyghaleb :heartpulse: I’m fighting a heavy depression right now so that causes me to isolate and not be as involved or responsive. I have read through your responses and it’s great to hear from others and I relate to something in all of them. It’s so complicated. During times like this I have trouble opening up and get overwhelmed with the slightest things - were talking just daily normal brushing my teeth like stuff soooo if I’m having trouble helping myself sadly, there is not much others can do to help. It is frustrating and maddening for me and I am sure frustrating and upsetting to people who care about me. Hence the vicious circle of not sharing. I’ll try to take it one thing at a time.

I have had episodes of depression on and off for most of my life since being diagnosed at 17. Thank goodness I was always able to take care of my T1D during these times. As much as I could anyway with the tools we had in the 70’s haha. Part of the reason why the issue of burdening others is such a big part of it now is that I am 64 and have several complications from long term D. I have lived alone for many years and always been very strong and independent. Basically, everyday is spent being my own “Caretaker”. Starting from the basics of caring for T1D - diet, exercise, monitoring very volatile BG (thanks to cgm and sugar surfing I can keep my A1C 6.2-6.5), set changes (struggling with allergic reactions to new Tandem sets), sensor changes, chronic pain, difficulty walking and using my hands, arthritis, vision issues, autonomic low BP, severe gastroparesis and neuropathy leading to an ileostomy in 2015 which has a whole other set of care taking issues including a hernia requiring surgery soon. Then add the constant issues with of insurance, doctors, supplies, and everyday life of taking care of a house, finances and pets and car by myself. So - being 64 I am worried and scared about a time coming soon when I can’t do this for myself. This thought terrifies me. People say you need to ask for help which led to the issue of burdening others.

Okay I just vomited up a ton of stuff and feel like I was totally being a whining complainer!! It was really hard to say all of that. Which is one one the many reasons I don’t share with anyone. I mean, like, YUK! Who want’s to hear any of this? I tend to always lean towards the focus on others to take my mind off all this *#!t (I don’t know if cussing is okay on FUD).

My adult children are caring, loving people who have been through the thick and thin of all this with me. It has been up to them to sit by me during a multitude of surgeries and procedures etc. But short of leaning on them for those times I don’t like to burden them. When I do share the daily pain and frustration I think they have a feeling of helplessness and their own fears. Ideally, I think this is usually the place for a parent of spouse to fill in. Sadly, in my case I don’t have either. When I have asked others to help They are usually too busy and tend to avoid being with me out of quilt. These are my assumptions.

So HUGE post. Be careful what you ask for Nicky haha! Love you! Thanks for listening.

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@Jattzl, you are a helluva woman. Talk about brave and strong.

I admire you. Everything you said made sense. I’m rooting for you. And biggest thing: You are the furthest thing from a whiner I’ve ever seen.

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Thanks for clearing that up - it makes sense. Maturity level definitely factors in to this.

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Thank you @T1Allison It helps to have that encouragement. I think it is what @Nickyghaleb was hoping for for me to open up here.

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I want to hear it. I can handle it. I can tell you there isn’t a THING you could say that would make me disappear. (And people have tried :slightly_smiling_face:).

I’m so happy you appeared, and I hope from the bottom of my heart you don’t go again. I know people have already have left lots of responses, and I have a lot to say about all of them, but there were some great things in there… about communicating in a factual way, about understanding that it doesn’t protect your children to keep it from them… there is a lot, and that’s a terrible summary. I’ll add again that maybe just asking your kids to join one of our groups so they can see the conversation…

I don’t have any answers. Im glad you’re here, and I’m glad you let it spill. You are a beautiful and strong woman, and that was my very first impression of you. Nothing about that has changed. :two_hearts::two_hearts:

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For some reason from the first day you swooped in and saved me from that “group that shall not be named” I have been able to spill it all to you. Thank you for hanging in there with me :hugs::kissing_heart:

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Or, they are worried that you won’t be with them for very long, and that is definitely not a comforting feeling. We have some family members that have part of the burden that you do (ilesotomy), and that is definitely life changing. Feel free to vent here. We have many members with complicated problems, and I think the ability to talk with others that understand is helpful to many.

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@Chris Thank you Chris. I think that is the feeling my children have and when they were little and even into their young adulthood they saw me as being strong and healthy in spite of all the challenges of D. I leaned more towards

As the complications started and I am getting older it has been a scary adjustment for them. As for my extended family, I don’t know what to say. They are aware but we have very little contact and when or if the subject of my health comes up it is met with silence. To the point of actually excluding me from events because they assume it would be too much for me. It really hurts. I’ve talked with them about how I feel but like @T1Allison. I hit a wall and nothing changes.

The ostomy has been like you said life changing. I thought I was prepared but I think it is the main reason for the depression in am in now. It is a very hidden issue. In fact, even though it is due to neurological diabetic complications, I have NEVER talked about it in T1D forums and also have NEVER seen others talk about it so I assumed I am the only one who was lucky enough to have my nerves shut down like they have.

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That is exactly why we are here. Yes, it isn’t a common complication, but it is one none-the-less. Additionally, people don’t like talking about things that make others uncomfortable. I think that is why online forums excel, because people can keep their anonymity. With that said, after many years working in the healthcare field directly with patients, I know first-hand that information helps. When we don’t talk about things, people assume things. This usually isn’t good.

Also, in the heart disease area, the most common complication associated with implanted defibrillators, is…wait for it…depression.

The common denominator with diabetes is that like heart disease often makes people feel isolated.

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Very true! Non one in “real life” knows about it! I tried to go to an ostomy support group once shortly after surgery and there was a big sign in capital letters OSTOMY GROUP. I was so mortified to have someone see me walk in there I drove away! What a chicken. :flushed::anguished:

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@Chris I also worried about causing others to be fearful of ‘omg I hope that doesn’t happen to me’! So to help alleviate that a little - I have another auto-immune disease called CIDP (chronic inflammatory demylating polyneuropathy) It is a sister to MS. MS causes lots of autonomic bladder and digestive neuropathies. The cardiologist says that it is the CIDP that is more likely to be affecting my BP problems in my heart. sorry veering off subject

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