This summer marked 20 years since my diagnosis of Type 1 diabetes. Over the course of these two decades, I’ve felt differently about my condition—angry, embarrassed, defiant, flippant, fixated, trapped, alone. But as I enter my third decade, the feeling is one of connectedness to other type 1 diabetics and people with disabilities.
I first felt such a connectedness when I saw a reflection of my own pain in an underappreciated diabetes memoir. At the time, I was an undergraduate in a creative nonfiction workshop. I wrote an essay about trying—and failing—to manage my diabetes while living abroad. My professor, Rachel Hall, who was always attuned to my pain, gave me a copy of Sweet, Invisible Body: Reflections on a Life with Diabetes by Lisa Roney. Reading Roney’s memoir was like glimpsing into a future I had refused to imagine. I didn’t want to be a grown up with diabetes. But Roney managed to do all the things I dreamed about and to do them while riding the wild blood sugar roller coaster. She studied, travelled, had passionate affairs, and accomplished the most unlikely achievement of all—she wrote for a living.
Roney gave voice to my conflicted feelings about wanting my suffering to be seen and also disguised. She, too, wanted comfort but not pity. She, too, rationed pleas for help, only reaching out in the most desperate moments. She described physical sensations that I had experienced for years—and that I experienced while I sat and read the book—but never shared with anyone due to their hyperspecificity. Her book provided an opportunity for me to understand how the daily trials of diabetes had left me feeling exhausted, isolated, and, thanks to widely held misconceptions about disability, invisible.
Now in my early 30s, I still think about Sweet Invisible Body and what it gave me at such a crucial time. Roney is currently a professor of English and Creative Writing at the University of Central Florida. In June, we spoke on the phone about what the book meant to me, other memoirs about Type 1 diabetes at the time of her writing, and the most pressing issue facing diabetics today: the cost of insulin. The interview has been edited for length.
EP: When I read your book, it came to me through a creative writing professor who was reading my essays about diabetes and was like you should read this book — it’s great! And I read it in like two days with such intense hunger because I didn’t know that I would ever read a memoir that reflected my experience so specifically. I had long presumed that my experiences with diabetes were too specific for anyone to want to read. When you wrote this book, who did you imagine your audience to be? Other diabetics? Non-diabetics? Other people with chronic illnesses?
LR: That’s a good question, and I don’t know how accurately I will be remembering what my thoughts were back then. I think I mostly had a need to explain myself. So, I guess the first audience would be my friends, who struggled to understand what I had been through—what I was going through—and what life was like. And I explained it to so many people over and over and over again. And I just thought, people really don’t understand this disease. They really have no clue. I would meet so many people who would just think, Oh you take a shot every day and everything’s fine now. No, not exactly. And so my friends were kind of stand-ins for people who might know someone with diabetes but didn’t really understand it.
There was also the frustration that I had about the lack of realistic literature about diabetes. I would occasionally find these “memoirs” that were completely cheerleader-like. They were unreflective about the meaning of the condition. They very much seemed to have taken to heart the medical world’s rah-rah, you can do it attitude, and I was like, Well, I know I can do it. I do it every day. But there was just nothing out there that seemed to me to meaningfully reflect on diabetes. And so the book was indeed also written for people with diabetes.
Interestingly enough, that same year or within the year of my book being published, there were two other diabetes memoirs that were a little bit different but came from some of the same impulses. One of them was Andie Dominick’s Needles. That one, interestingly enough, was even more optimistic than mine, if I remember correctly. And so that was a really interesting book for me to read because I was like, Wow, you know we have a lot in common but a lot of differences too. So it helped me to feel the individuality of the experience.
EP: Your book was published in 1999. The cost of insulin has increased dramatically since 1999, making it a major issue within the diabetes community. I’m wondering if you could talk a little bit about what effect diabetes has had on you financially over the years and if you’re feeling the price of insulin right now.
LR: I’m nearing what ought to be a retirement age. I’m 58 years old, and I think one of the miscalculations that I made was that I just did not anticipate how much money would be coming out of my bank account every year just to support the basic costs of diabetes. And that’s money that has not gone into my retirement. And yet if there was a “me” sitting right next to me who didn’t have diabetes, she could retire in two years. This person with a chronic illness can’t. She has to keep working in order to support the years of spending money on a chronic illness. It’s another one of those things where you just think why didn’t anybody ever think about this?
I have to say, on an immediate day-to-day basis I’m very lucky because I have decent health insurance provided by my job. But I’m also married to a Canadian. I don’t know if you knew that, but I am married now! I was very single in the book, but I am married now. And my husband is just astounded by what we put up with in this health care system.
“In Canada, I feel certain that they wouldn’t let us die in the street. And I don’t feel that way here.”
EP: Have you ever considered moving to Canada together?
LR: Well, we may do it when we retire. I don’t particularly want to live in Canada. It’s cold up there. I did live in Minnesota for a while, but I am not really a cold weather person. But we think about it. We don’t have children. We don’t have long term care insurance. And so, what are we going to do in the U.S.?
A few years ago I found out by chance that if you’re in the state of Florida, where I live now, and you put yourself on the list to go into a nursing home that takes Medicare, they don’t put you in the first bed that’s available in your area. They put you in the first bed that’s available in the state. So, it doesn’t matter if you’ve lived 30 years in Orlando if they have a bed in Miami. It doesn’t matter if your husband or your children are still living in Orlando. If they have a bed in Miami, you’re going to Miami. If that kind of scenario becomes the choice we have, then we may very well move to Canada. Retirement incomes can be very tight. In Canada, I feel certain that they wouldn’t let us die in the street. And I don’t feel that way here. A lot of people including my husband think, Oh, your fears are exaggerated—we’re upper middle class people, we don’t have to worry! But I don’t feel that way. I think I have a permanent sense of vulnerability about this just because I just can’t live without it. I can’t live without my insulin.