My sister has had diabetes for 20 years: realising now I need a bit of support too

My son is 6 and hasn’t got diabetes, but ever since he was born I’ve realised just how much my life with my sister has affected me and is now affecting my little boy in the way I parent. I’d just love to speak to other adults who are siblings of people with diabetes, maybe to reassure me I’m not mad or bad…!

I understand that a sibling with a medical condition will get extra attention and that it can affect the entire family, but how is it affecting your parenting and your son? Maybe if you describe this, you can get some on-topic feedback. Hope you are ok.

Hi! Thank you for your message - I haven’t explained myself very well. My sister was diagnosed when she was 8 and I was 13 and so I grew up helping her and my mum to manage the condition. When my son came along 6 years ago I started dreaming that he and my sister were the same person and I have so much anxiety. I just, I’m just sad a lot and keep thinking he’s going to die - god it’s so dramatic. I think I grew up constantly worrying my sister was going to die and I still have that, especially when I get midnight phone calls (she lives in America now, I’m in Britain, so a midnight phone call is normally just her a bit drunk and being daft!) but it’s spilling over into me being a bit hyper-sensitive to health concerns with my little boy. I’m a single mum too, so it can get a bit intense and he’s at an age where he’s learned to manipulate me (he’s a clever little bugger). His dad and I get on well and I have a great support network, but I just want to speak with other older siblings.

I feel like I’ve failed because I seem sometimes to be more broken by it than my sister is. She’s so tough and practical and bright, and I am always trying to keep my fear at arm’s length.

@bigfish Natalie, please let me start by saying that I am a mechanic, not a doctor and especially not a therapist. None of my 4 siblings are on this support site and I am glad in a way because of the stories they might be tempted to tell.

so it was me that put the diabetic ding in the family dynamic, and while I can’t help you directly maybe indirectly I can share something of my 40 years experience with diabetes. Also and probably more directly - my father had health disability (he had polio as a teenager) so as far as drama and taking care of those we love and being afraid to lose them: all 5 of us children experienced it.

From my perspective, yes I did get more attention, but when they saw me with those needles, it was the kind of attention no one wanted anyway. I am sure that the carb counting and attention to what I was eating affected them, but then so did the attention to my Dad, who could not walk, and the 70’s were not a time where accessibility was on anyone’s mind. I can tell you that when I learn I have to take care of the people I love, it makes me kind of codependent. It makes me step out of what I need to be concerned with, into what I don’t exactly need to be concerned with, or even, what’s none-of-my-business. When there is a member in desperate need, the others may take over the responsibilities, and when those others are young, it can kind of make for a distorted life model than can affect all other relationships.

My frustration that I could not help my Dad was pervasive. I look at where my siblings and I are now and it’s no accident: I fix stuff, complicated stuff that no one else can fix, and I design new stuff when the old stuff can’t be fixed. Same exact thing as 2 of my kid brothers. My older sister is a teacher, helping special needs 8-10 year olds with learning disabilities, The last kid brother is a doctor, helping sick people and, he trains young doctors. to be better doctors. All of us have this “helping” and “fixing” common denominator.

When my son was born, I almost had a nervous breakdown. I was older (44). My vocation also exposes me to a line of work I can describe as disaster recovery, where you dream up things that can go wrong and then either design in an avoidance, or a backup or develop a plan. This leads to weeks of “what if” analyses. I have also by now seen many family members, peers and friends die of accidents and health issues. The papers are full of freak accidents and tragedy. Before my son was born I thought having a kid was going to be a “responsibility” heck I am really good at responsibility so “no problem” but the real problem is not new responsibility or working hard, it’s the exposure to risk. I have this person in my life, this precious little person, that I could not bear to lose or to have hardship happen to.

Anyway, as an expert in disaster scenarios, I was like a madman. what if he falls, what if I fall on him, what if he gets near that pool, what if he becomes entangled, what of that thing falls on him, that car loses control, what if there was a fire… my anxiety grew to the point that it made me sick, inside and out. The thought of him getting diabetes, zika, ebola, pneumonia, rabies, or a sore throat could literally make me faint. It was me against the entire world and the world was winning.

I’m not saying I am okay now, 'cause I’m not. What I can say is that I had to start with me, I had to exercise more, make time to relax more, and then to find a mental frame of reference that made me feel better. Perfectly healthy people have accidents. There are those with illness that live fuller lives, sometimes. There must be a power greater than me that orchestrates this… so my job is not to worry away his childhood, it is to enjoy, if not cherish every moment. I can’t do that while worrying, and what is worry anyway? It’s being fixated on all things negative. There are plenty of scenarios where my doomsday sequence does not happen, so even if the risk is high, if I am not curled up in a ball crying, I will recognize when the miracles happen and maybe once in a while, be able to rejoice in them.

If my kid gets sick I’ll be there. If he gets diabetes… who else in this world could help him better than me? It takes some getting used to, but since everything associated with life is risk then if there is no risk, there is no life. Conversely, if I intend to have brilliant, meaningful life, then I have to risk everything… literally everything.

If you feel like you are truly losing it then I urge you to please speak with a therapist. There are a million ways to deal with this and enjoy the short little bit of time that they are children. Please do not miss it - it’ll never be here again.

Good luck.

Joe thank you so much for your post. It means such a lot that you would take the time to write.

It is so helpful to hear about your experiences and so interesting to know the sort of work you and all your siblings went into - the ripple effects of living with health conditions.

I went the other way, I went to university at 18 and got as far away from caring roles as I could, I was an actress for ten years. Recently though I’ve walked away from that career and I’m currently working in my son’s school helping a different little boy to manage his diabetes. It’s as if I’ve come full circle and decided to confront what scares me the most.

What you have to say about exposure to risk is so wise! I am terrified of risk. But I’m so in love with living, I don’t want my fear to block me all the time.

I’m glad that you are looking after yourself and finding a way through your experiences after your son came along. I know the ebola panic - I stockpiled tins of food. We were drinking powdered milk for months! I’ve seen a counsellor before, but not since I became a single mum. She was amazing, it was a life-changing experience. I won’t rule out going back.

In the meantime, yes, kinder to myself, more space, more nurture, and reframing each worry.

Thank you. Warm wishes to you and yours.

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