Book Review - Understanding for those diagnosed as children

I have been reading posts on here by Type 1's who were diagnosed as children as well as those, like me, who were diagnosed later in life. I also started a Type 1 Women's Group which I attended for a year before I moved. That group had women ranging in age from teens to 70s and in length of diagnosis from a few months to 50 years. So it's not as if I haven't been exposed to people diagnosed younger, and I've always had an enormous respect for the complexity of dealing with Type 1 at the same time as growing up, puberty, marriage, college, etc. But I never felt I could really understand what that had been like since I hadn't experienced it.

The other day I was browsing in the health section at my library and came across a book called Sweet Invisible Body by Lisa Roney. I actually almost put the book back on the shelf because it was published in 1999. I tend to not read anything written before 2000 because the world has changed so much. (Especially diabetes!). But then I realized it was a memoir, so decided to read it.

I loved this book! It told me so much about what it is like to be diagnosed young (in this case age 12). Though I know everyone is different and her experience will differ in some ways from others diagnosed around the same age, I feel there are commonalities that I now feel much more understanding of. Also she was diagnosed in 1972 so it gave me an idea of what D treatment was like back then. I think anyone whether having "been there" or not, like me, will gain a lot from this book. In addition to a better understanding of the experience of Type 1's diagnosed young there were some universal feelings that I related to as well, and that she expresses very eloquently. There were things I didn't like about the book and its author, but many more I loved. I definitely recommend it.

Thanks for the recommendation! I've read several threads that have recommended other books, and I wonder if people could add their recommendations to this thread as well?

Thanks for the info, Zoey! I picked that book up YEARS ago, when I was in college and having a really hard time with my diabetes, and I don't think I managed to finish it (too busy being in college, probably). I'll give it another try!

The Book of Better, by Chuck Eichten

Guide to Raising a Child with Diabetes, by Jean Betschart Roemer

Lifestyle Makeover for Diabetics and Pre-Diabetics, by George Tohme

When I was in my early 20s I went from not thinking about diabetes much to suddenly feeling a TON of emotions around it (sadness, fear, anger, overwhelmed). I didn't feel like I had anyone who I could talk to because I felt like the only people who could truly understand were other people with Type 1, and at the time (early 2000s) the DOC didn't exist as it does today. Instead, I searched for and read every book I could get my hands on about diabetes, especially autobiographies by people with diabetes. I think Sweet Invisible Body was the first autobiography I read, and I have a used copy sitting around that I've been meaning to re-read, but never seem to get the time.

A book that stuck with me more than the above is one called Needles. I'm not sure why I remember it more, except that the second chapter literally made me cry uncontrollably. Very few books do that. It's an excellent book, though has some grim parts when it comes to diabetes complications affecting young adults. I've been meaning to re-read that one, too.

Incidentally, it was reading these autobiographies that made me realize I wanted to control my diabetes better, because ALL of the people who wrote them ended up with complications. At the time I had an A1c in the high 8% range, and I realized I really wanted to work on getting that down, which is what eventually led me to the DOC in 2005 searching for other people with diabetes.

Another excellent book (whose prolouge also almost made me cry!) is Cheating Destiny. It's more about Type 1 in a broader sense, but talks a lot about how Type 1 affects someone's childhood years, too.

Though not an autobiography, another EXCELLENT book is The 50 Secrets of the Longest Living People with Diabetes. I love this book because it's inspirational, yet not preachy nor one of those books that just ignores everything that's difficult about diabetes as if it doesn't exist.

I always love book recommendations so am looking forward to others people may have!

Thank Yopu Zoe I'll have to read that. I was 10 when I was diagnosed in 73. Yes so much has changed since then. Back when I was diagnosed the advice I got from other's was not to tell anyone about it. Now it's all over and their even advertisements about the bs meters that didn't exist then. Really interesting..............

Is "Needles" an autobiography too, Jen?

So you were very close in age and time to the woman who wrote the book, Doris. She talks too, about trying to hide her Diabetes so she can be seen as "normal".

There is definitely a lot more information about Diabetes out there today; it seems every other minute I hear the word on TV. But because my generation, the baby boomers are now middle aged and so many are diagnosed with Type 2, it seems like all the info is geared to that. I'm not sure whether that helps us Type 1's or hurts us.

But I can only imagine how isolating it must have felt to be diagnosed before the DOC and probably not know anyone else in the same boat. I believe the first other Type 1 the author of the book meets is a guidance counselor in the disabled students office at her college where she goes because she heard they offered some scholarship money for medical expenses. The woman is also a Type 1 who is now completely blind due to complications. Because she is older, she certainly came from a time when good control was elusive. It depressed and frightened the author.

What is the DOC please?

"Diabetes Online Community" :)

Hi Zoe. Could young T1s benefit from reading this book? Is it something one could keep in a classroom library for say teens/preteens with or without diabetes?

Probably not, Peetie. The writing is fairly sophisticated and she also focuses a lot on her sexual (though in a meaningful way to show how her diabetes influenced her intimate relationships). Other than the early parts about her diagnosis, most of it would appeal more, I would think to older teens and college aged. Also, as she was diagnosed in the very early 70s, a lot of it is dated, both in terms of the diabetes treatment (though she updates that to her present - 1999), but more so culturally. The parts about her college years which are a huge chunk of the book actually resonated more for me as a later version of my 60s experience, than it would to today's youth.



"I know about needles."

All her life, Andie Dominick adored her older sister, Denise. She wanted to look like her, talk like her, be her. Unfortunately, she got part of her wish when, at age nine, she was diagnosed with the same disease from which Denise had suffered since age two: juvenile diabetes. In this beautifully written, revelatory, and profoundly affecting memoir, Dominick recounts her transformation from a free-spirited kid who enjoyed giving shots to her stuffed animals with her sister's castaway needles to a life-long patient who must learn to inject herself twice a day. Emotionally charged, tragic, but in the end hopeful, Dominick tells how she found the courage to embrace love and hope in the face of fear, and to live with a disease that has taken so much from her.

Chosen in 1999 by the American Library Association as one of the best books for teenagers.

Thanks, Jen. This one actually sounds a lot more suited to Peetie's question about a good classroom book for pre-teens and teens than the one I read.

I'm kind of surprised it's advertised as a teen book, actually, given how graphic some of the scenes I remember are. I think it's a book adults would enjoy, too (I had no idea it was a "teen book" until I saw it on Amazon just now!).

Thanks Kate

Some books can appeal to both. I think it's a matter of style too as well as subject matter. Sweet Invisible body is written in a sophisticated style (very good writing and I'm pretty fussy about that!) and she does a lot of reflecting on philosophical and psychological issues. I think it would appeal more to 20-somethings and up who are looking back at their own past experiences, where the one you describe sounds like it might appeal to young people who are actually going through it now. Though I really couldn't say until I read it. I also think it matters what time period it takes place in. Kids from the 2010's don't relate much to the 70s (except to make fun of their parents!)

Kids from the 2010's don't relate much to the 70s ...

About a year ago I was actually talking to a CDE about how I felt like diabetes was harder for kids these days than it was when I was a kid. When I was a kid I tested 4x a day and did shots 2x a day and that was it. Nowadays kids have to deal with pumps and testing 10x a day and counting carbohydrates and math ...

She said she didn't think it was harder, just different. Kids now can have total flexibility while I was locked into a strict meal plan and schedule. And even though we think ranging from, say, 60-200 every day isn't perfect, it beats seeing 30s and 300s regularly before each scheduled meal in that locked-in plan! (Side note: We were told never to test after meals when I was a kid because we'd be high. I remember testing once about two hours after lunch, just out of curiosity, and found I was in the high 400s. I'm sure that happened after every meal, which makes me shudder to think of today!)

I definitely think diabetes today is pretty different from diabetes when I was diagnosed over 20 years ago. Wonder what it'll be like when we look back in another 20 years ...

Yes, the lack of flexibility back then must have been hard on kids. The author talked about the urine testing; I think she said there were five "colors" that covered the range from like 0 to 500! Yikes, worse than useless!

I was actually referring to culture in general, with that quote. But yes, I always wonder when I look back at something from the "dark ages" with my modern knowledge and then wonder how ridiculous the future will see us!

Kick ■■■!