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 become old generally is a privilege; to become old with diabetes is that, tenfold.”
My recent endocrinologist is younger than me.
I’ve had several clinicians who’re younger than me, but that is the primary 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 might be the rule, not the exception, going forward.
Which implies, 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 text right – hitting the sweet spot between “We’ve got this!” and “Holy moly, we have now to still have this.”
Being honest without being depressing. Deliberately not including the quote from the journal article that talked in regards to the mortality rate of individuals with type 1 diabetes. You recognize the drill.
Just Googling “diabetes mortality” put me in a grumpy mood. I knew this was a real, albeit shifting assessment. Our management tools improve yearly (if not by the month), so the ways we manage diabetes have gotten simpler, 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.
Once I was younger, my biggest concerns were set way in the long run. But now I’m in that future, I’m concerned. And my concerns stack with time.
Screening for diabetes complications
That’s an enormous thing that got here up, over and once again with friends within the diabetes community. Screening for complications is a box-checking moment, and coping 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 looks like a subject that’s on the tougher side to discuss with friends.
I wanted to attach with other individuals who were many years into diabetes. To listen to their concerns and questions, to seek out out what they wished was more broadly discussed by way of aging with diabetes. To check notes. To search out community in that exact way.
Martin Wood was diagnosed with type 1 diabetes on 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 opposite areas of my life – my lively life, skilled life, relationships, mental health, physical capabilities, joys, and dreams,” he said. “Let discussions be a catalyst for us living well with diabetes, where the main focus is on the living, with diabetes firmly situated as a sub-plot of that story.”
“There may be a lot 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 on the age of 15. “The recent article on 42 things that affect glucose management is an excellent place to start out more meaningful conversations in regards to the cognitive burden.”
Screening for complications is an enormous piece of the aging process, even when 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 a part of the method, with my parents helping me make it a part of the routine from the beginning.
As I’ve grown older, I’m not so sure every check-up will come and go and not using a recent diagnosis, however the yearly habit makes me higher prepared for whatever comes. It could be daunting to maintain checking, though.
“When you undergo 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 on the age of seven and is aiming for his half-century medal from the Joslin Clinic.
“Complications should not inevitable, but we still use pretty crude tools so there are not any guarantees either,” Strumello said. “Don’t blame yourself if complications occur – they aren’t your fault. It’s the fault of diabetes and the tools used to administer it. But also don’t delay treatments that may intervene like if you should care on your eyes.”
Prioritizing mental health
Physical complications are discussed with regularity, however the mental health component of diabetes isn’t all the time on the forefront of screenings.
“As we grow old, mental health must be prioritized more in healthcare visits beyond simply ensuring my labs are ordered and prescriptions are filled,” Martin said. “Mental health and living with diabetes exist on a sliding scale and might be of greater concern as we grow old.”
“Possibly a part of it’s just getting older generally and my definition of life isn’t just the things that I’m doing, but in addition how way 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. You could do every thing 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 apart from for it to not exist. But it surely’s scary.”
The attitude that comes with living with chronic illness is a curious little side dish of pressure to make life or death decisions each day, garnished with fear and triumph. Fear of doing it fallacious and bringing death closer, and the triumph of being here one other day. We now have a lot power, a lot control, while concurrently rolling the dice a little bit bit.
But sometimes I don’t want all the additional perspective. I’d quite have the last 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 on the age of 5, his parents found a pediatric endocrinologist who also had diabetes. Their discussions led Binder to imagine 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 actually wish there was someone I could consult with who makes a speciality of long-tenured diabetics. But that’s a brand new field of study isn’t it?” Binder said. “I struggle with this a lot. I have to be kinder to myself, but I also have to kick my very own butt and force myself to do higher. I just need to seek out a technique to get the assistance I want to regulate my pondering.”
I personally expected (hoped for?) a cure by the point I left middle school or perhaps the tip of highschool. Needless to say by the point 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. After which I reinvest in my diabetes care as a technique to manage the grief.
How diabetes changes with age
Anna Norton, who was diagnosed on the age of 18 and has been living with diabetes for over 30 years, keeps give attention to maintaining good health. Nonetheless, she does worry about diabetes being a priority for her family as she ages.
“One worry of mine is that as I age, I don’t need to burden others – specifically my son,” she said. “I especially don’t need to be a ‘diabetes burden’ to him. I’m unsure how you can address this or how you can avoid it, nevertheless it does keep me up at night sometimes.”
Concerns about how diabetes will manifest as we get older got here up often in my discussions with peers, especially because it pertains to living in a nursing home or elderly care facility. Ann Martens, age 59, has lived with diabetes since 2013.
“I’m afraid 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 do know they won’t have the ability to administer my diabetes. I’m single, don’t have any children, and yes, the considered this being my future terrifies me.”
Challenges of a shifting healthcare system
Laddie Lindahal, who was diagnosed with type 1 diabetes on the age of 24, talked in regards to the healthcare system and the way it has shifted over the course of her 46 years with diabetes.
“My general care is reflective of the decline and problems within the U.S. healthcare system – particularly post-Covid,” Lindahal said. “It takes over 4 months to get an appointment with my internist. If I got sick, I assume I’d go to urgent care. I’ve all the time been a self-manager of my diabetes. That is sweet enough for now, nevertheless it seems ironic that I got higher care in my 50s than I do at age 70.”
Lindahal also weighed in together with her concerns about managing diabetes in her elderly years.
“Once I take a look at my diabetes, I’m comfortable believing that I’ll be answerable for it throughout my ‘young-old’ years and hopefully well into my ‘middle-old’ years,” she said. “It’s likely that I’ll require help in some unspecified time in the future in my ‘old-old’ years. That terrifies me because I don’t trust anyone else to deal with 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 have the ability to assist us when we will now not look after ourselves? Relatives are busy with their very own lives and don’t have any knowledge or interest in diabetes healthcare. Assisted living look after those of us with T1D doesn’t exist,” Senungetuk said.
Who tackles these sorts of issues? The long-term healthcare facilities? Clinicians? The federal government? Patients? Like Binder mentioned, long-tenured individuals with diabetes are a more recent group. We, alongside the healthcare system, are determining how you can support individuals with diabetes as they age.
Leaning on peers for support
Peer support got here up in almost every discussion with diabetes long-haulers. People with diabetes, for my part, have been leaps and bounds ahead of any skilled medical group by way of caring for each other’s diabetes within the context of our actual lives.
The recommendation and expertise we get from our clinicians is essential, but we learn to implement it with the support of other individuals with diabetes. We discover ways to support each other through difficult diagnoses, cycles of mental challenges, and recent stages of life with diabetes.
Even just reading responses from individuals 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 even have to say there’s something freeing about that. Still having the ability to function despite the complication has oddly removed an amazing deal of fear. I finished asking life for permission,” Rice said.
Wood put emphasis on being selfish with regards to self-management.
“Be selfish along 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 once we are young with diabetes, and lots of of us have hidden away our needs consequently. If not before, when you level as much as middle age refuse to cover your needs anymore – whether or not they relate to diabetes or not.”
“My advice to those that are recent of their diagnosis? Diabetes is just 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 filled with hurdles. Some you easily soar over and others will take you crashing to the bottom,” she said. “Accept that diabetes will all the time be with you and that almost all days you’ll control it. And on the times that you may’t? That’s okay, too. All of us have been there.”
And for me? I’m 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 become old generally is a privilege; to become old with diabetes is that, tenfold. Some days, I hate the burden. Other days, I welcome the attitude. Day-after-day, I’m grateful to be here.
I draw inspiration from individuals who tell me about boiling needles for insulin and urinalysis kits as their only way of checking blood sugar. From individuals who tell me about their fourth, fifth, sixth, and sometimes seventh decade with diabetes.
I hear their stories and am stuffed with a way of hope that carries me through the toughest days, over the tallest hurdles, and to whatever comes next. The recommendation and expertise we get from our clinicians is essential, but we learn to implement that advice with the support of our peers.
Older individuals with diabetes must be seen and heard, and not only as a cautionary tale for younger individuals with diabetes. Their stories – our stories – provide context and structure for aging with diabetes and tell us that life goes on in a productive and powerful way – even after diagnosis.
Once I was younger, I’d hear of an individual marking their fortieth or fiftieth 12 months with diabetes and think, “Wow. That’s an extended time they usually’re still here!” Now, I’m not as surprised to listen to a couple of fellow long-hauler.
We’re still here.