My insurance company called me about a program they have for people with
type 1 diabeters diabetes diseases. The conversation went something like this:
Ins. lady: “Ms. Kerstetter, if your daughter were enrolled in this program you would automatically get your supplies from…”
Me: “It wouldn’t be my daughter, it would be me. I don’t have a daughter. I don’t have any children. I’m the one with type 1 diabetes.”
Ins. lady: “Oh… *pause* I’m sorry.”
I know that when the general public sees the words “type 1 diabetes” or “juvenile diabetes” (as I’m reasonably certain my insurance forms had to say) they think of children, probably even this photo:
The unfortunate fact is that sweet, innocent faces raise more money for research. I’m reasonably fond of my face, but it’s not going on a
poster web banner ad to raise awareness for type 1 diabetes anytime soon. The thing is, that kids with type 1 grow up to be adults with type 1. And there are kids who don’t have type 1 who grow up to become adults with type 1. I should know… I’m one of them.
Sure adults aren’t as cute as showing little faces in anguish at getting an insulin injection. Yes, children provide better fundraising fodder. Yes, saying “diagnosed at just 18 months” or any infant/toddler age makes people go, “awww.”
It’s way more common than people think for adults to be diagnosed with type 1 or LADA diabetes. The reason people don’t think it’s common is because the stories of type 1 being diagnosed in adults are rarely told and rarely shared.
I tell my story.
I tell it so much that people might feel that I cram it down their throats.
No one else seems to want to tell our stories. People diagnosed as adults are often under represented (or not at all) in news articles and on diabetes-supplier sites/blogs/newsletter/etc.
I believe that our stories need to be told. Type 1 diabetes cannot stay cornered in the neat little box of “childhood illness” with words like “juvenile” continuing to represent it. Why? Because even doctors don’t pay attention to the symptoms of type 1 when they appear in people over age 18. So many of the adult diagnosis stories I’ve heard include misdiagnosis as type 2 and sometimes months of ineffective treatment, guilt and frustration. Others of us (like me) were accidentally diagnosed when looking for something else as a potential cause for our problems… No one else seems to want to talk about being diagnosed with diabetes by a pregnancy test.
But the problem with using almost exclusively little faces to raise awareness is that people think that you grow out of diabetes. You can’t grow out of type 1 diabetes without growing a new pancreas… and as far as I know, that’s scientifically impossible. There are medical companies that only acknowledge type 1 as “childhood-onset diabetes.” This is wrong and it should be stopped.
Because of the way that people choose to share stories and focus on the kid-factor people continue to believe the wrong things about diabetes. The fact is, diabetes doesn’t discriminate on age, but society does.
This picture may not raise funds for diabetes research, but I love to use it as a representation of what my diabetes looks like… and it flies in the face of many of the commonly held misconceptions about diabetes:
The woman in the photo is an active adult, who never had type 1 as a child but carries it with her everywhere she goes now. She has never been fat, she didn’t ask for it, but she works hard to be healthy.
From a medical/insurance standpoint, I do hope that the lady was reading the wrong profile like she hastily said she was and not making the faulty assumption that it had to be a child in question because type 1 is a “childhood illness.” I would be the first one to know if I had a daughter and my insurance forms would reflect as much. Aside from me, there’s one other person on that policy and there’s no chance that he’s my daughter.
That was great Rachel! I was diagnosed at 49! I too wish they would stop calling it juvenile diabetes. I wish they would rename type 1 all together. Tired of having to explain to everyone the difference between type 1 and 2. Keep up the great work!
Thanks for your explanation! I was diagnosed in my 30s, not sharing exact age thank you! But almost 4 years after my daughter so it wasn’t as big of a surprise as hers. I wrote about my diagnosis http://needanap2.blogspot.com/2012/10/a-happy-doctor-visit.html And now Bigfoot have diabetes is writing about hers, also through TrialNet (though she’s more eloquent and funny than I am).
Sara from Moments of Wonderful was an adult too, though I think your story is very unique. 🙂 I think the DOC is growing and more are talking so there will be more, but it’s nice to know I’m not the only one whose doctor thought they were type 2 instead of 1 or LADA.
Wow! Thanks for sharing the link to your story. I was definitely interested in the role of TrialNet. Along with Sara’s story (I’m a big fan of hers) one of my childhood friends was misdiagnosed as type 2 and treated for it for months, by the doctor that I used to see as a child. She went through so much emotional trauma due to that diagnosis, come to find out she had LADA. That’s why think it’s so important for doctors of all people to be willing to look past the “juvenile” label that has been stuck to type 1 for so long and recognize the symptoms in adults.
I just saw a bumper sticker – “work for a cure for juvenile diabetes” – and I was truly surprised that people still call it that! I was diagnosed with type 1 when I was 21, my uncle was in his 40s. Calling it “juvenile diabetes” implies that adults with diabetes have some other flavor of diabetes.
Hi Rachel. First, thank you for sharing this post. I’ve said this before on my blog but it takes a lot of courage to tell your own story, especially in a raw and honest way as you have. I couldn’t agree more with…well, everything you said. I often feel like I’m in a tiny corner all by my lonesome. I really appreciate your blogs. I don’t think you realize how much they’ve helped me. xoxo!
Very refreshing. My thoughts exactly. Had to read it after seeing the title. I bwas diagnosed with T1D at 56 thirteen months ago. I don’t usually say the exact age but there’s a point to be made here. Slim and active – walking my dog for at least 45 mins most days and playing netball twice a week. Quite reasonable but not perfect diet. NO history of T1D in my family but there is Hashimoto’s. Two grandparents had T2D. A high BGL from a random blood test branded me as prediabetic by a GP without further investigation apart from the details of my diet. “We’ll keep a check on it.” I looked up every other possible reason for a high sugar reading, telling myself I couldn’t possibly have diabetes. Of course I was thinking T2D as I didn’t know that adults could get T1D. Nothing else fitted. 12 months later after losing 5 kg in a few weeks without trying, nightly leg cramps, waking with a headache every morning and a brain fog that took hours to clear I went for a ‘routine’ GTT which the technician wouldn’t do as my urine sugar level was off the scale. T2D said the GP with the side comment of: ‘ You’re a most unusual T2D.’ I got tired of hearing that and ‘Are you feeling ok?’ in those two weeks of ‘T2D’. I don’t know what finally prompted her to test for T1D antibodies but the results were clear.
I had several disbelieving but polite reactions of ‘I didn’t think you could get it at your age.’ ‘I thought you had to be born with that.’ I have been through the stages of denial, anger and frustration at the diagnosis and ‘settled’ into new routines. I just wish people including GPs KNEW that it can happen at any age. Being older doesn’t make it easier. I have 56 years of eating and lifestyle habits to deal with. Some days I just crave for foods that would just send my BGLs skyrocketing.
Now the thing I would like the most in this new world of mine is a diabetes buddy. Someone like me. Diagnosed later in life. I read blogs and articles online and my friends and family are supportive but it’s not the same as having someone who KNOWS.
My husband was diagnosed at 55. I had pancreatitis (from gallstones….) and it fried my pancreas, so I am essentially a type one at age 53. Interesting to both have insulin dependent diabetes in out 50’s…..