I recently read “Shot” by Amy Ryan. Amy was diagnosed with Type 1 Diabetes at the age of 29.
I’ve invited Amy here today to tell you a little bit about herself and her book.
So, where do I begin? I have so many questions. So much of what you said in your book resonated with me. And because chronic illness narratives tend to be similar despite having different illnesses, I really enjoy reading books by patients who have diseases other than my own.
First off, can you tell my readers a little bit about yourself?
AR: I am 46 years old, and was diagnosed with Type 1 Diabetes when I was 29. Since then, I’ve gotten married, had a daughter, helped to raise two stepsons, gone to law school, and now written a book. I live in Alexandria, VA, and practice law in Washington, D.C.
Wow! So in other words, you haven’t let Type 1 Diabetes stop you from living your life. What made you decide to write a book about your experiences with Type 1 Diabetes?
AR: This might sound unusual, but I wanted to write a book about T1D that people who don’t have the disease might read. I feel like T1D is a very misunderstood condition, and that few people outside the families of those who have it, really understand how taxing it is on a daily basis. I think most of the books about T1D are directed to people who have the disease – books about how to manage it, how to plan meals, etc. I wanted to write a readable account of daily life with T1D that people who have diabetes can relate to, but I wanted to do it in a way that would be an interesting read for people who don’t have diabetes as well. My goal with the book is that it will raise awareness about our condition outside the realm of those who suffer with this disease.
For you, it all started off with a yeast infection, which seems harmless enough. Then as you got deeper into the medical realm, you began to realize that you had been having symptoms for a while. What was that like for you?
AR: It was perplexing, really. I didn’t understand how this could have been developing within me, how this had happened to me, without me really being aware of it. It left me questioning many things – how could I ever trust my instincts, or know if I was healthy, if I had missed all of these warning signs? And this may sound cliché, but it made me realize how much I had taken my good health for granted. Good health is such a gift, and I think I did not fully appreciate it when I had it.
You talk about insulin shots and glucose levels, ketoacidosis and many other Diabetes-related concepts. It’s overwhelming. What was the learning curve like for you? Were you able to master the art of self-injection? I know that’s something that I, and other chronically ill people, not just those with Diabetes, have struggled with.
AR: The learning curve was steep, and at times overwhelming. Just when I would think I had a handle on things, something new would come up and I would feel like I was behind the eight-ball again. For a long time, I felt like I could never get ahead of this disease. I still feel that way sometimes now. I did master the art of self-injection, because I had too. All of us with T1D have to master it, because there is no other treatment for Type 1. In the beginning, I really didn’t think I could make myself do it, but eventually it becomes second nature, as much a fact of life as brushing your teeth.
Your syringe collection sounds a lot like my prescription bottle collection. I’ve kept every empty prescription bottle since I got sick. We’re talking over five years now. It’s quite a nuisance, actually, because it takes up a lot of room in my tiny apartment, but there’s something about them. It’s as if they are the thing that makes me being sick real, as like you, most of the time, I don’t look sick.
AR: It’s interesting that you say that, because you are right – you don’t look sick if you have T1D. It’s not a disease you can see. Sometimes when I tell people that I have diabetes, they say, “You do? You don’t look like you have diabetes.” That always gives me a chuckle – how am I supposed to look? For me, the piles of syringes that used to accumulate before I started on an insulin pump were a stark physical representation of the toll that this disease takes over time. You might not be able to see this disease, but it’s there constantly, piling on with stress and worry year after year – just like all those used syringes in my shopping bag.
You talk a lot about the realization of what it means to have a chronic illness – the fact that it never goes away. Can you say more about that?
AR: That, for me, is the most daunting part of this disease. It was such a hard thing to adjust to, so difficult to really understand what always means. In the early days after my diagnosis, I think in the back of my mind I thought I would be able to stop my treatment at some point. If ever I had been sick before then, I might take antibiotics for 10 days, or have some other course of treatment, but it would always stop and I would be well again. With a chronic illness, it never stops. Not for a day. That was a gradual, painful, and depressing realization for me.
I have Lupus and Rheumatoid Arthritis. My readers have other illnesses, as well, so it might be helpful to give a bit of information about Type 1 Diabetes.
AR: I sympathize with you, as I have RA as well, which was diagnosed about 10 years after the diabetes. Like Lupus and RA, Type 1 Diabetes is an autoimmune disease. I think this is one of the facts about T1D that many people don’t understand – it’s not a lifestyle disease, it’s not caused by diet or lack of exercise, and it’s not a disease of childhood either. In Type 1 Diabetes, the immune system attacks and destroys the beta cells in the pancreas that produce insulin, which everyone needs to stay alive. This is why people who have T1D must have injections of insulin in order to survive.
One of the most heart-wrenching parts of the book is where you talk about “Dead-in- bed” syndrome. Can you explain more about that to my readers?
AR: This is a rare yet terrifying syndrome in which a person who has Type 1 Diabetes, typically a teenager, dies during the night, while sleeping. The presumed cause is hypoglycemia (low blood sugar). It occurs in people who have no history of complications from diabetes, and who otherwise are in good control of the disease. For a parent of a child with diabetes, this is their worst nightmare, and it’s something they have to be concerned about every single night. The parents of children who have T1D never get a rest, never a night off from the worry.
What’s an insulin pump, and how has it impacted your life as a patient with Type 1 Diabetes?
AR: An insulin pump is a medical device that’s worn on the body and releases a constant dose of insulin through a cannula (a thin tube) that is inserted and remains under the skin. Except in rare circumstances (such as if there are problems with the pump or blood sugar is unusually high), people who use insulin pumps no longer have to give themselves shots of insulin because the tube under the skin emits a steady dose. Wearing an insulin pump has helped me because I no longer have to keep up with hundreds of syringes and related supplies every month, and because it enables me to adjust insulin dosages discreetly, which I was not comfortable doing in front of other people when I took insulin by injection.
After you were diagnosed, you ended up getting married and having a baby. How did you manage that and Type 1 Diabetes? It certainly gives other chronically ill women hope that they can have a family and manage a chronic illness.
AR: I was extremely fortunate when I was pregnant to have dedicated doctors – both my obgyn and my perinatologist (high risk specialist) – who always made time for me and who gave me the support, both medical and emotional, that I needed to get through my pregnancy. I was very motivated to take care of my diabetes because I was not just taking care of myself, but also the new life I was carrying. It also helped that the pregnancy was for a finite period of time – I found it a bit less daunting to think I only have to manage this so intensely for 30 more weeks, then 20 more weeks, etc., as opposed to looking at it for the rest of my life. The finite chunk of time seemed more manageable.
There is a lot of misinformation out there about Diabetes, or at least people think they know a lot about it when they actually don’t. How has it been to deal with other peoples’ preconceived notions about what it “means” (or who fits the profile) to be a person with Diabetes?
AR: Honestly, very often I would not even tell people that I have T1D, because I would not feel like fielding the follow-up questions. People will say, “Can’t you go on a diet or something? Don’t you exercise?” Or sometimes, they will tell me about someone they know who lost a foot to diabetes, or lost their vision. Besides that, it’s a very complicated disease to explain, it’s not as simple as saying that I take my insulin every day and move on. It’s actually one of the reasons that I wrote the book – the next time someone asks what it’s like to have Type 1 Diabetes, I want to be able say, “Here, read this book. This is what it’s like.” From my own perspective, it takes a book to explain this disease.
At the beginning of the book, it isn’t immediately apparent that your diagnosis took place in 1996. How have things in the Diabetes world changed since then?
AR: Things have changed so much, all for the better. There are faster acting forms of insulin that were not available in 1996. There are finer-tipped syringes, and syringe pens that make injections easier. There are more advanced insulin pumps, and continuous glucose monitors. There’s also much more of a community, and it’s easier to find information than it was in 1996 (pre-Internet). There are so many terrific blogs for people with T1D, and they provide such a sense of community and comfort. I feel far less alone with this disease than I did 17 years ago.
What have you learned from your experiences?
AR: I have learned that everyone struggles with something. Everyone faces challenges and has to deal with things that they wish they didn’t have to. Many of these things, like T1D, are things that no one else can see, but they’re there nevertheless. This is what I tell my daughter and stepsons, that you can’t assume anything simply by looking at someone, you can’t assume their life is easy or they don’t have challenges to overcome. We all have so much more beneath the surface than what meets the eye, and not all of it is pretty or easy.
I think that’s a great lesson. What do you hope readers will get from your book?
AR: For readers who suffer with T1D, or any chronic condition, I hope they will relate to the story and feel that they have found a new friend. For those who aren’t familiar with T1D, I hope they will read the book and understand a bit more about what life with this disease is all about.
What’s next for you?
AR: For now, I’m trying to get the word out about the book, which has been a lot of fun and tremendously gratifying. I’m doing some book signings and attending some JDRF (formerly the Juvenile Diabetes Research Foundation) events. I’m connecting with blogs like yours, and enjoying some of the early feedback I’ve gotten on the book.
Thanks so much for talking to me!
Thanks, Amy for sharing your story! And thanks for stopping by Getting Closer to Myself today.
*I received a free copy of this book from the publisher. However, my choice to have Amy as a guest blogger was my choice, and had to do with my personal opinion of the book.