When I was 10 years old I was diagnosed with T1D. That was 35 years ago. At first my parents dealt with my diabetes the best they could. It was different those days: a sugarless diet and no glucosemeters yet. When I was twelve my father decided that I didn’t want any help from him regarding my diabetes because that’s what he claims I told him. At the same time my mother went back to university and didn’t pay a lot of attention to my diabetes either. I didn’t mind because this way I could pretend my diabetes wasn’t there. In the mean time I was developing an eating disorder. I also was diagnosed with a depression when I was fourteen, but didn’t get any treatment for the eating disorder or the depression. When I was about 20 years I tried to commit suicide several times. That’s when I got treatment for my emotional problems. But I never talked to my parents about my emotional problems. They never took them seriously. They considered my depression to be regular teenage angst and my eating disorder to be a case of simply eating too much. Also: in all those years up until now they have never asked me about my diabetes or how I was doing in regard to my diabetes. I’ve never heard of other people who have experienced emotional and physical neglect from their parents regarding their diabetes. Anybody out there who can relate?
As a parent of a type 1, I’m speechless. I can’t imagine ever doing that to my daughter… it’s like your parents just decided it was too much for them and thought they would pass all the responsibly onto you. And then to never even ask about it, or to realize it might be responsible for your depression or eating disorder… thats crazy!!!
In regards to other parents, there was a little girl at the school my kids attended a few years back and she was only 5 and her parents were sending her terrible lunches and snacks, basically pure carbs with no protein or fat. She said her dad would let her have chocolate for breakfast and her bg was always around 17 (306). It made me so upset because it seemed like these parents just didn’t get it, and I was sad that their choices were hurting their daughter.
It’s not easy parenting a type 1, but from what it sounds like your parents made a huge mess of it.
You might find Supreme Court Justice Sonia Sotomayor’s biographical book interesting. Judge Sonia Sotomayor was born as the elder of two children in the South Bronx area of New York City, on June 25, 1954. Sotomayor’s family functioned on a very modest income; her mother was a nurse at a methadone clinic, and her father was a tool-and-die worker. When her husband died in 1963, Celina worked hard to raise her children as a single parent. Sonia was diagnosed with type 1 diabetes in childhood and I found her descriptions of her daily regime to exist and survive very informative. I am so glad better treatment is available for my son now.
I am so sorry that you did not get the attention you needed.
I was not neglected, I was anything but neglected, but I still wish my parents had sought emotional help for me with diabetes or within the first year of treatment. I think my life would have been so much better. 43 years later, it seems like that would have been a good idea.
I’m so sorry to hear this. Diabetes is different with everyone, as is how we deal with the challenges life presents us. Some of us - most of us here on forums like this - dive in and learn as much as we can and try to get control of it. Others protect themselves and hope it will work out on its own - sounds like your parents might have been experiencing some denial. That’s really unfortunate.
I don’t know anyone personally with a similar experience - I know a couple of people who were diagnosed pre-teen/teen and were always in charge of their diabetes with little to no parent involvement. Perhaps it was bc of similar circumstances to yours.
I feel like the people I know through the online community are the hyper-interested ones and are not a large sampling of people living with diabetes. In real life, I’ve come in contact with several students with diabetes and we seem to be the outlier in care - using technology and strategies to give Caleb the best control he can have. Other students aren’t taking advantage of current technology and their care plans are much looser. In Caleb’s most recent school, there was another student with diabetes and her parents were not involved in her care and her bgs were often high. I know this from the school nurse comparing and contrasting the two methods of care and how drastic the differences are. Through the years when we’ve developed Caleb’s care plan at school it’s been a struggle because what we ask for as reasonable accommodations seem to be unheard of which leads me to believe that other students are doing a little “hoping for the best.”
I’m sure you are not the only one to experience this.
I was diagnosed at 14. My parents each had to give me one shot in the hospital to prove they could if they had to, but beyond that all involved were all about empowering me do do it all myself so that I would take immediate ownership of it and come into my impending need for independence in a way that included my self care. My mom had such a needle phobia she visibly sobbed when she put the needle in, which made her thank the Lord I was all about doing my shots myself, but she became a little helicopter about me being perfect about the rest of it. My dad did fine with the shot but was a laid back enough dad that he just trusted me to handle everything. I never felt neglected about it, but I can see now that between my diagnosis, my brother’s passing a year later, and my dad’s (very mild) heart attack a year after that, they probably should have found me some help beyond the short term grief support group the school invited me into.
I’m very glad you are all sharing your stories. This is a Very Important subject!..
I can barely imagine how difficult it must be to guide a T1 child through life. Bravo to all of you and your struggling parents…And many blessings!
We have a former member here—actually she’s still a member but no longer participates actively—who ended up divorcing her husband at least in part because he refused to have any role whatever in caring for their daughter’s diabetes. And I know at second hand of a case where the husband said, put the baby up for adoption or else I’m leaving because, in his words, he didn’t want to “raise a defective”. He’s now history and mother and daughter are doing fine. (The mother works for a friend.) So as deplorable as it is, your case is anything but singular. Sigh.
Hi, I read your experience. I was diagnosed at 9 months old after being misdiagnosed with epilepsy and going into 2 comas. My grandmother said to my mother why didn’t you just let him die? When I was growing up we tested urine for sugar, if it was anything less than 4+, the highest reading possible, my mom would make me drink sugar water. Then when I would get hospitalized for high blood sugar problems, she would blame me for not following my diet, eating to much, drinking regular pop, so on and so forth. She was not able to read, so I just shrugged it off as her not knowing, but the lying to my doctor shows she knew what she was doing. I deal with depression and still wonder why she did what she did. She passed away in 2009, so it is one of many questions I have that will go unanswered. I can relate to what you are feeling.
Amazing–and heartbreaking–what we will accept as children because by nature we assume our parents are there to nurture and protect us. That is a truly appalling story. No wonder it left you with emotional/psychological problems to deal with. I hope you are proud to have had the strength to survive such mistreatment–you deserve to be.