Redkite
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi all,
Following a couple of recent threads where certain comments touched a raw nerve with many parents (including myself), I thought perhaps we could shed some light on that aspect! So people can understand why there is sometimes such a strong reaction to well-intentioned comments.
I don't have diabetes, but I wish I did. I wish it was me and not my son. I would like to think most people who are parents would rather they themselves were ill than see their child suffer. I carry a guilt that he has it, though logically there is nothing that I did or didn't do which caused it, nevertheless I feel guilty and sad that his carefree childhood was snatched away at the age of 4. And I worry a lot about the complications he could suffer from in later life.
Right from the start this was compounded by ignorance from all sides. As soon as word got out that my son was diabetic, he stopped getting invitations for play dates. We invited plenty of other kids over, and gradually managed to show a few other Mums that actually he could still safely be invited, though many never reciprocated. His school was totally unsupportive, and I had to go in daily to test and inject, thus being unable to return to my previous job as an accountant, though I did work in school as a midday supervisor for a while. So as a family, my son's diabetes also impacted on our income in a big way. There were multiple incidences of him being excluded and treated differently at school, and I had my work cut out trying to solve this. There have been many tears
On the other side of the coin, his first hospital team were absolutely hopeless, clinics constantly cancelled, DSN never contactable, so we were on our own with books and the Internet right from the start. Everything I know about carb-counting, dose adjustment, sick day management, exercise, etc. was self-taught or picked up on forums. As soon as I starting learning more about gold-standard diabetes care, we had a fight on our hands, as he had been put on mixed insulins which was totally rubbish for him, but the consultant said it would be "easier for him and for school". Since in my view it wouldn't be easier for him to be blind by the time he was 20 I didn't accept that. But it took a year to get MDI prescribed.
This all probably sounds like one long whinge, but because I've been up against it from the beginning, I am inclined to be on the defensive about it all the time 😉 So sometimes when people post a comment that is a little carelessly phrased and seems critical of parents, my armour goes on and I come out fighting!
There are days when I feel really down about it, and on those days if someone says something thoughtless or something minor happens like yet another delay getting a prescription filled, it can be the final straw and I will get all tearful. Other days I have a thicker skin. I am well used to other parents asking if my son is "more stable yet"? A minority are genuinely interested but most will glaze over if I give an honest reply so I just say "yes he's doing fine thanks".
I feel very isolated with this (especially now being a single parent for the past couple of years), so forums are a way to connect with people who understand. I value all advice, but please offer it sensitively. Thanks 🙂 🙂
Following a couple of recent threads where certain comments touched a raw nerve with many parents (including myself), I thought perhaps we could shed some light on that aspect! So people can understand why there is sometimes such a strong reaction to well-intentioned comments.
I don't have diabetes, but I wish I did. I wish it was me and not my son. I would like to think most people who are parents would rather they themselves were ill than see their child suffer. I carry a guilt that he has it, though logically there is nothing that I did or didn't do which caused it, nevertheless I feel guilty and sad that his carefree childhood was snatched away at the age of 4. And I worry a lot about the complications he could suffer from in later life.
Right from the start this was compounded by ignorance from all sides. As soon as word got out that my son was diabetic, he stopped getting invitations for play dates. We invited plenty of other kids over, and gradually managed to show a few other Mums that actually he could still safely be invited, though many never reciprocated. His school was totally unsupportive, and I had to go in daily to test and inject, thus being unable to return to my previous job as an accountant, though I did work in school as a midday supervisor for a while. So as a family, my son's diabetes also impacted on our income in a big way. There were multiple incidences of him being excluded and treated differently at school, and I had my work cut out trying to solve this. There have been many tears
On the other side of the coin, his first hospital team were absolutely hopeless, clinics constantly cancelled, DSN never contactable, so we were on our own with books and the Internet right from the start. Everything I know about carb-counting, dose adjustment, sick day management, exercise, etc. was self-taught or picked up on forums. As soon as I starting learning more about gold-standard diabetes care, we had a fight on our hands, as he had been put on mixed insulins which was totally rubbish for him, but the consultant said it would be "easier for him and for school". Since in my view it wouldn't be easier for him to be blind by the time he was 20 I didn't accept that. But it took a year to get MDI prescribed.
This all probably sounds like one long whinge, but because I've been up against it from the beginning, I am inclined to be on the defensive about it all the time 😉 So sometimes when people post a comment that is a little carelessly phrased and seems critical of parents, my armour goes on and I come out fighting!
There are days when I feel really down about it, and on those days if someone says something thoughtless or something minor happens like yet another delay getting a prescription filled, it can be the final straw and I will get all tearful. Other days I have a thicker skin. I am well used to other parents asking if my son is "more stable yet"? A minority are genuinely interested but most will glaze over if I give an honest reply so I just say "yes he's doing fine thanks".
I feel very isolated with this (especially now being a single parent for the past couple of years), so forums are a way to connect with people who understand. I value all advice, but please offer it sensitively. Thanks 🙂 🙂
