This content originally appeared on diaTribe. Republished with permission.
By Kerri Sparling
Kerri Sparling reflects on her lifelong experience of living with diabetes and interviews others living with the condition. She writes, “To grow old in general is a privilege; to grow old with diabetes is that, tenfold.”
My new endocrinologist is younger than me.
I’ve had several clinicians who are younger than me, but this is the first time my endocrinologist has been my junior. I’m 44 years old and have had diabetes for 36 years – longer than he’s been alive. And this will be the rule, not the exception, going forward.
Which means, by default, that I’m getting older.
Aging with diabetes is weird to me because I don’t have any concept of aging without diabetes. And I’ll admit that I’ve taken several cracks at getting the tone of this article right – hitting the sweet spot between “We’ve got this!” and “Holy moly, we have to still have this.”
Being honest without being depressing. Deliberately not including the quote from the journal article that talked about the mortality rate of people with type 1 diabetes. You know the drill.
Just Googling “diabetes mortality” put me in a grumpy mood. I knew this was a true, albeit shifting assessment. Our management tools improve every year (if not by the month), so the ways we manage diabetes are becoming more effective, less intrusive, and our outcomes improve with every step. Implementing the tools, though, is less straight-forward. This makes aging well with diabetes sometimes feel like a privilege tied to access.
When I was younger, my biggest concerns were set way in the future. But now I’m in that future, I’m concerned. And my concerns stack with time.
Screening for diabetes complications
That’s a big thing that came up, over and over again with friends in the diabetes community. Screening for complications is a box-checking moment, and dealing with anything that crops up folds into the list of things we’re already managing.
The mental load of diabetes is something we don’t often get asked about by clinicians. And it seems like a topic that’s on the tougher side to talk about with friends.
I wanted to connect with other people who were decades into diabetes. To hear their concerns and questions, to find out what they wished was more broadly discussed in terms of aging with diabetes. To compare notes. To find community in that particular way.
Martin Wood was diagnosed with type 1 diabetes at the age of two and he’s lived with diabetes for 42 years. He was game for a chat about aging with diabetes and what he wished was discussed more readily.
“Consider how diabetes intersects all the other areas of my life – my active life, professional life, relationships, mental health, physical capabilities, joys, and dreams,” he said. “Let discussions be a catalyst for us living well with diabetes, where the focus is on the living, with diabetes firmly situated as a sub-plot of that story.”
“There is so much discussion about type 1, yet much of it seems ill-informed and shallow,” shared Florida resident Laurie Schatzberg, who was diagnosed over 52 years ago at the age of 15. “The recent article on 42 things that affect glucose management is a wonderful place to start more meaningful conversations about the cognitive burden.”
Screening for complications is a big piece of the aging process, even if it’s uncomfortable to confront that reality. I don’t avoid eye dilations, skin checks, or dental visits. I’ve made those visits an integral and habitual part of the process, with my parents helping me make it part of the routine from the start.
As I’ve grown older, I’m not so sure every check-up will come and go without a new diagnosis, but the yearly habit makes me better prepared for whatever comes. It can be daunting to keep checking, though.
“If you go through a period of six months where your management is horrific, don’t apologize for that. Just look forward and move on,” said Scott Strumello, who was diagnosed with type 1 diabetes at the age of seven and is aiming for his half-century medal from the Joslin Clinic.
“Complications are not inevitable, but we still use pretty crude tools so there are no guarantees either,” Strumello said. “Don’t blame yourself if complications happen – they aren’t your fault. It’s the fault of diabetes and the tools used to manage it. But also don’t delay treatments that can intervene like if you need to care for your eyes.”
Prioritizing mental health
Physical complications are discussed with regularity, but the mental health component of diabetes isn’t always at the forefront of screenings.
“As we get older, mental health needs to be prioritized more in healthcare visits beyond simply making sure my labs are ordered and prescriptions are filled,” Martin said. “Mental health and living with diabetes exist on a sliding scale and can be of greater concern as we get older.”
“Maybe part of it is just getting older in general and my definition of life isn’t just the things that I’m doing, but also how much more time do I get to do those things?” said Harry Thompson, who has lived for over 31 years with diabetes.
“That’s the part where I worry that diabetes has the advantage and I haven’t completely come to grips with that – even after 30 plus years. That you can do everything right and diabetes can still win,” said Thompson. “I don’t know that I wish it was talked about more, I don’t really wish anything other than for it not to exist. But it’s scary.”
The perspective that comes with living with chronic illness is a curious little side dish of pressure to make life or death decisions every day, garnished with fear and triumph. Fear of doing it wrong and bringing death closer, and the triumph of being here another day. We have so much power, so much control, while simultaneously rolling the dice a little bit.
But sometimes I don’t want all the extra perspective. I’d rather have the decade of health tacked back on to my life.
Expectations for a cure
Zak Binder was diagnosed with diabetes over 43 years ago. He wrote to me about being diagnosed so young, and the expectations he had for a cure. When he was diagnosed at the age of five, his parents found a pediatric endocrinologist who also had diabetes. Their discussions led Binder to believe that the cure was coming “soon.”
But when he marked 30 years with diabetes – what he called the “arbitrary date that childhood me decided I needed a cure by” – his mental health tumbled.
“I really wish there was someone I could talk to who specializes in long-tenured diabetics. But that’s a new field of study isn’t it?” Binder said. “I struggle with this so much. I need to be kinder to myself, but I also need to kick my own butt and force myself to do better. I just need to find a way to get the help I need to adjust my thinking.”
I personally expected (hoped for?) a cure by the time I left middle school or maybe the end of high school. For sure by the time I graduated from college, right? By my wedding? The birth of my first child? My second child? When that cure doesn’t come, I’m still waiting and my hope becomes calloused. And then I reinvest in my diabetes care as a way to manage the grief.
How diabetes changes with age
Anna Norton, who was diagnosed at the age of 18 and has been living with diabetes for over 30 years, keeps focus on maintaining good health. However, she does worry about diabetes being a concern for her family as she ages.
“One worry of mine is that as I age, I don’t want to burden others – specifically my son,” she said. “I especially don’t want to be a ‘diabetes burden’ to him. I’m not sure how to address this or how to avoid it, but it does keep me up at night sometimes.”
Concerns about how diabetes will manifest as we grow older came up often in my discussions with peers, especially as it pertains to living in a nursing home or elderly care facility. Ann Martens, age 59, has lived with diabetes since 2013.
“I am terrified of ending up in a nursing home with diabetes,” Martens said. “Medicare won’t pay for a Dexcom or pump if I’m in a nursing home and I know they won’t be able to manage my diabetes. I’m single, have no children, and yes, the thought of this being my future terrifies me.”
Challenges of a shifting healthcare system
Laddie Lindahal, who was diagnosed with type 1 diabetes at the age of 24, talked about the healthcare system and how it has shifted over the course of her 46 years with diabetes.
“My general care is reflective of the decline and problems in the U.S. healthcare system – particularly post-Covid,” Lindahal said. “It takes over four months to get an appointment with my internist. If I got sick, I guess I would go to urgent care. I’ve always been a self-manager of my diabetes. That is good enough for now, but it seems ironic that I got better care in my 50s than I do at age 70.”
Lindahal also weighed in with her concerns about managing diabetes in her elderly years.
“When I look at my diabetes, I’m comfortable believing that I’ll be in control of it throughout my ‘young-old’ years and hopefully well into my ‘middle-old’ years,” she said. “It’s likely that I may require help at some point in my ‘old-old’ years. That terrifies me because I don’t trust anyone else to take care of my diabetes. My biggest fear while aging is losing independence.”
Janis Nussbaum Senungetuk, a Kansas City, Missouri native who has been living with diabetes since 1955, agreed.
“Who will be able to help us when we can no longer care for ourselves? Relatives are busy with their own lives and have no knowledge or interest in diabetes healthcare. Assisted living care for those of us with T1D doesn’t exist,” Senungetuk said.
Who tackles these kinds of issues? The long-term healthcare facilities? Clinicians? The government? Patients? Like Binder mentioned, long-tenured people with diabetes are a newer group. We, alongside the healthcare system, are figuring out how to support people with diabetes as they age.
Leaning on peers for support
Peer support came up in almost every discussion with diabetes long-haulers. People with diabetes, in my opinion, have been leaps and bounds ahead of any professional medical group in terms of taking care of one another’s diabetes in the context of our actual lives.
The advice and expertise we get from our clinicians is important, but we learn to implement it with the support of other people with diabetes. We find ways to support each other through difficult diagnoses, cycles of mental challenges, and new stages of life with diabetes.
Even just reading responses from people who emailed their thoughts about aging and diabetes brought me comfort. It let me know we aren’t alone.
“I live with depression and anxiety enough to where adding additional stress is unnecessary,” said Chelcie Rice, who was diagnosed at age 25 and has been living with diabetes for over 30 years.
“I lost vision in my right eye and I have to say there’s something freeing about that. Still being able to function in spite of the complication has oddly removed a great deal of fear. I stopped asking life for permission,” Rice said.
Wood put emphasis on being selfish when it comes to self-management.
“Be selfish with your diabetes. It’s your life, your goals, your health, your diabetes,” he said. “Be selfish about what you need. They don’t teach us to be selfish when we are young with diabetes, and many of us have hidden away our needs as a result. If not before, once you level up to middle age refuse to hide your needs anymore – whether they relate to diabetes or not.”
“My advice to those who are new in their diagnosis? Diabetes is not a race,” wrote 53-year-old Jackie McNellis Porco of Southern California, who was diagnosed with diabetes when she was 11 months old.
“It’s a lifetime marathon full of hurdles. Some you easily soar over and others will take you crashing to the ground,” she said. “Accept that diabetes will always be with you and that most days you will control it. And on the days that you can’t? That’s okay, too. We all have been there.”
And for me? I am in my early 40s and my diabetes is in its late 30s. We’ve grown up together, me and the ‘betes. And we are growing old together. To grow old in general is a privilege; to grow old with diabetes is that, tenfold. Some days, I hate the burden. Other days, I welcome the perspective. Every day, I’m grateful to be here.
I draw inspiration from people who tell me about boiling needles for insulin and urinalysis kits as their only way of checking blood sugar. From people who tell me about their fourth, fifth, sixth, and sometimes seventh decade with diabetes.
I hear their stories and am filled with a sense of hope that carries me through the hardest days, over the tallest hurdles, and to whatever comes next. The advice and expertise we get from our clinicians is important, but we learn to implement that advice with the support of our peers.
Older people with diabetes should be seen and heard, and not just as a cautionary tale for younger people with diabetes. Their stories – our stories – provide context and structure for aging with diabetes and let us know that life goes on in a productive and powerful way – even after diagnosis.
When I was younger, I’d hear of a person marking their 40th or 50th year with diabetes and think, “Wow. That’s a long time and they’re still here!” Now, I’m not as surprised to hear about a fellow long-hauler.
We’re still here.