T1 diabetes and family relationships

Coping & Emotional Support
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I suppose this phenomenon isn’t restricted to T1 diabetes, but I’m speaking from my own personal experience. And before anyone asks: yes, I’m seeing a therapist.

As an adult who’s had T1 for 95% of my entire life, I’ve become very conscious about all the “trouble” my disease caused for everyone else: parents who constantly worried and hovered, an older sibling who resented me for always being the center of attention, classmates who were jealous because I got to have a snack or sit down for 10 minutes during P.E., employers who thought I was full of crap for being 2 hours late to work after waking up with a 47 blood sugar… it’s exhausting.

Any chronic illness is bad enough, but the worst side effect is other people’s emotions. Yeah, I should love and respect myself no matter what, but that doesn’t happen overnight or even within a couple of decades.

If you know, you know.

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hi @Gemtwyst i hope you don’t mind a thought on this from me… i’m walking the face of this planet 57 years now… in my opinion, everyone, and I mean everyone has some pain and stressor in their lives… some carry it really well and some do not. Everything that affects me affects all the people in my life, it could be superficial like if I am in a bad and snippy mood because I was up at 2 fixing a low… or much less superficial such as having long term traumatic stress, which I may be imposing on my child and wife. Also, when they are feeling something, instead of having additional feelings imposed upon me due to their individual and personal stressors, losses, pain, etc. I can take a deep breath and use empathy, or compassion and just try to be nice.

So I keep in mind everyone has some form of pain, and I try very hard not to take their personal issues as my personal fault, and I hope in my heart of hearts that when I am experiencing pain they they do not think it is them. For me, keeping it this way in my head makes my relationships mutually beneficial, or at worst mutually benign, and not damaging. and I find a lot of hope in the quote “Those who mind don’t matter, and those who matter don’t mind”

my wish is that you don’t take personal responsibility for someone else’s reaction to your pain. cheers!

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I appreciate your insight Joe. I’m not usually this much of a complainer! :sweat_smile:

This has been an unusually stressful year, which of course has compounded the effects of diabetes. Thankfully, this won’t last forever.

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Amen to that!!! @Gemtwyst Sending you a BIG HUG❣️

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Hi, I’m sorry to hear about the stress you feel, when others let you know about the stress they feel!

It makes me feel a bit bad, because I am a dad with an 18 year old, who does an amazingly good job of managing their T1D (diagnosed at age 15). But once in a while if something goes wrong, they can be HIGH (>320) or LOW (<40) in the middle of the night, asleep, and I jump up to ‘help.’ by waking them up and asking them to take some action. I truly feel I am being of help because I feel like otherwise, they might go really low or too high for too long. Sometimes we discuss what could lead to the high or low, the same day, but it sometimes still can happen. They are 18, have friends and like to munch on junk food sometimes!

If this happens a couple of nights in a row, I suspect that they are not being responsible enough, and are leaning on me to jump in, even though that is not their intent. I know that they don’t like it, but at 18 I feel that they are just a few months away from being able to do everything themself, without my intervention. We can go days without any concerns.

What should I do? We talk about it, and maturely, they understand my position. As a father, as unlikely as it might be, my main concern is that I don’t want them to die, or be severely ill.

If I just step in and ‘help,’ then they do not feel any repercussions for their decisions to neglect their T1D, and if I do let them know that I got a bad night of sleep, with lots of alarms going off all night (say when they are off at college) then I know it adds stress to them. Somewhere in the middle is the right answer.

So, just to let you know, I know that sometimes stuff just doesn’t work right, and no one is to blame - and other times they know their sensor is acting up, but they neglect to replace it until midnight! I feel we are making progress, and eventually, probably within the next year, they will be self-sufficient. I do not want to put added stress on them, but inadvertently, I do.

The T1D patient feels the stress every day. The parent only feels it when there is an issue. I care about my child, and want them to succeed. They are doing a great job now, but not perfect, of course. It will never be perfect, I know.

So, I feel bad that you are feeling stressed out, as others weigh in, and try to ‘help’ you with advice you probably do not need. It is a lot of stress to manage T1D on a daily basis. If you explain to the others how you feel, it will help them understand. Definitely you should tell them that it causes you stress, and it will probably lead to a good conversation. Sibling rivalry is something that exists even without illnesses, of course. People are going to react to what they perceive as a slight or special treatment. Maybe talking about it calmly when both parties are in a good mood, can help.

Sorry to be sounding like a victim myself, I know it is nothing compared to the stress you have every day to manage your T1D. The reason most of us get involved, is because we love you, and we only want the best for you. Sometimes we just are awkward in how we express it.

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IMO, the people who have dealt with the fact of your T1 badly are the “trouble” here, not the disease. Worse, you’re taking responsibility for something that’s not your fault.

My parents didn’t constantly worry and hover. That was their choice and it worked out fine. I have no idea whether anyone at school cared one way or another about my diabetes, if they even knew about it. The same at work. I also didn’t experience any jealousy, whether or not any existed. In general, I’ve kept the diabetes off center stage.

Maybe I was just lucky and you have had poor luck. I don’t know. What I do know, without being a therapist, is that one cannot take responsibility for other people’s errors or bad judgment, however well intended they were.

Whatever blame needs to be assigned in your judgment, at least do yourself the favor of assigning it reasonably.

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@Gemtwyst, I think about stuff like that sometimes, too. I’m 36 and have been diabetic for almost 30 years. The older I get, the more I realize how much T1D affected my relationships with my family. I only recently learned that my little sister started acting out after my diagnosis. Apparently our nightly story-time started as a way to guarantee she got one-on-one time with at least one parent every night. I had never thought about how it must have affected her before. I only remembered her sing-songy teasing “haha, you have to take needles” the night I was diagnosed. But it had to have been hard for a 4-year-old to understand why her big sister suddenly deserved so much more attention. I also recently learned that my very first endocrinologist convinced my mom I would die if we didn’t follow his instructions to the letter. She and I used to fight and argue about my diet all the time and I resented her for it for so long. Now, as a caregiver myself and knowing what I know about secondary traumatic stress, I understand how scared she must have been and I can’t help feeling guilty about it. But I also know that I can’t change the past or control others’ emotions. I think the best we can do is try to be compassionate, both towards ourselves and others, and take everything one day at a time. It’s good that your’e getting help with that. I am, too.

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I am lucky to be a part of my Cuban family where you are never too old to need help. My parents still worry and help if I need it. My 30 year old daughter knows we are here to help no matter her age. Unfortunately, we can get hypothermia even when controlling what we eat, and many times since we have to pump at least 15 minutes before the meal I end up thinking I am going to eat a certain quantity and it happens that few times end up not eating everything or the carbohydrates on the label reaction is different from person to person. My father is now on a pump too and when we were eating same meal, entering same carb count with same pump, one of us could get a hyper or hypo after 2 hours, but not frequently.

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There was a time when we were told not to take insulin until immediately before a meal or very shortly after we had started - so you could be pretty sure what you would be eating, at least quantity-wise. It’s rather ironic that the reverse is now true.

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Hi Anna,

I have experienced everything you mentioned in your original post. My sister still tells me that I was spoiled as a child. On a recent visit she brought this up and I told her, “I was a child with a chronic condition. As a result, people payed more attention to me, but it was not to spoil me.” She still does not accept this! So, I just accept that we will never agree.

I have left jobs because of employers who did not understand. In one instance, I had an employer who called the ADA and asked if a person with a low blood sugar of 45 mg/dL should be late to work. The person who answered told them that if my blood glucose was that low I would be in the hospital!! They accused me of lying and tried to write me up. I told them to call my endo. They did, but he refused to talk to them without me being present. I thanked him for that, but also explained what was going on. He then tried to set up a phone call with them and me, but they refused. They actually told me it was because they “couldn’t know who they were talking to.” That was when I put in my notice.
We can’t change others. We can only change ourselves. So, we must decide how much we are willing to take on. Yes, other people’s reactions to the fact that we have diabetes and the affects this disease has on our lives and the lives of those around us, varies person to person. We just have to decide individually how to deal with it all.

Pam K.

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@pamcklein I can’t imagine having the experience you did and I don’t mean to second guess your actions, sounds like you had good reason. But I hope you’ll give some employers, even friends/neighbors, etc., the chance to learn from you (even your Endo if they will listen) what being T1 is about and the impacts it may have. It would likely take time and effort on your part to break through the initial resistance in order to educate some folks, but you may have the opportunity to break through and gain at least “some” understanding so the next T1 doesn’t have to go thru the same experience you did. It’s not easy to be that pioneer, blazing the trail for others, but you never know when it may be rewarding as well. This obviously wasn’t that time, only you and the others involved can decide…