Sarah Howard
Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.
There are times I get tired of my life being about how many carbs I ate, how much movement I did, how warm the day is, what my stress level is at, and so on, and so on. It is every thought of most days. Pumps make dealing with diabetes easier but every once in a while, I have one of those days.
Totally agree! Those days are tough, but we hang in, don’t we?
Yup, and we keep on plugging along.
I do not see any positive future w/ re: to T1 diabetes. Decades (5+) of T1 have taught me open despair towards diabetes. Maintenance is never cure. The current and sole approach(es) are not quality of life instead are exclusively maintenance. (ie quantity). Different creatures entirely, sadly.
I am sometimes tired of the need to count carbs or not being able to eat as friends do, but I don’t feel burnt out in comparison to my other conditions (especially preexisting depression and epilepsy).
I would love to be perfectly healthy, but diabetes sometimes helps me focus on needed goals and gets my thoughts off worse ones.
I also am grateful for the research both having been and being done.
All time
My endo keeps telling me that I’m doing really well with managing my Diabetes but most days I feel like I’m “failing at it”. I get burned out very often but I try my absolute best to keep my mind and body healthy.
Not at all. I have decent control all the time. However I do struggle with my diet. I eat what I want most times when I know I would benefit from low carb, but I can’t seem to stay on it.
None of the responses are correct for me. I chose “Not at all/Very Little:.” However, that is not accurate either. I occasionally, to often, feel overwhelmed and down about managing my diabetes. I notice it when I have low blood glucose while I’m trying to get work done (which is daily). Sometimes the daily maintenance overwhelms me. Diabetes takes a lot of time out of my life, when I have other things that I want to do. I get frustrated because diabetes always gets in my way. For example, I would love to get up early in the morning and go for a 5 or 10 mile run. But, I have to eat and have a protein drink and then wait 2 hours for my blood glucose to rise high enough to run. Then, after 4 miles, I have to stop because my BG drops on me. I can’t just get up and go do something as other, non diabetic, people might do. I have to check my blood sugar, and take time to make sure that I have enough glucose in my blood before I take on any activity. There are many, many frustrations.
Having said that, there have never been times when when I don’t handle my management as I would normally want to. I continue to do my self-maintenance, and push through the frustration, and feelings of being overwhelmed. I just force myself to keep going. I don’t allow myself to “not manage” my diabetes.
Agreed, you said exactly what I am feeling. I always take care of myself, but I am constantly frustrated when I have to wait to walk the dog because I need my blood sugar to rise. Or if out with friends and I have to excuse myself to deal with a pump issue. There are some days I wish I could take a break from the stress of diabetes maintenance, from all the devices beeping at me throughout the day, and having to think about my blood sugar or what I have eaten or not eaten…argh!!!!
Hey, Lawrence S., years ago BEFORE CGMs, T1Ds were climbing Mt Everest and swimming in the Olympics! This involved training days hours long, 6 days/week, to point of exhaustion. Olympic Swimmer Gary Hall tested his bg 25x/day of training. https://www.chop.edu/video/gary-hall-Jr-life-athlete-diabetes
Yes, Wanacure, I remember watching Gary Hall in the Olympics. He was one of my heroes.
I am feeling burn-out but am trudging through like with everything. I kind of feel like Sisyphos for the exact same reasons- I’ve cheated death when I was 11 years old, in exchange I’ve been condemned to forever be enslaved to the mundane but Herculean task of trying to keep my glucose in a neat flat line (and the furies push it out of whack forcing me to start the task over and over again.) If that doesn’t explain T1D burnout, I don’t know what does. T1red!
To elaborate, Sisyphus should be named as the patron saint of T1D. He had to roll a huge bolder to the top of a large hill only to have it roll right back down to ground level. Then he had to start rolling it up again. He had to do it for eternity which we mortals can define as our life span. If Sisyphus isn’t the patron saint, who is? 🙈🙉🙊
I think another neat fact is that he was condemned to perform that task for eternity because he cheated death (twice). In a way, we each cheated death when we were diagnosed and treated with insulin. The zinger is our “mundane Herculean task” is taking insulin every day- the thing we cheated death with!
I have burnout about once a year where I really really dislike having to manage this lifestyle. I’m doing ok right now.
Anyone who answered not at all hasn’t turned 50 yet.
It says not at all or only a little. I am only a little and I will be 78 in November. Have had it for 68 years. Became a Certified Diabetes Educator and Dietitian which has made a world of difference. I believe a better education can give you a better outcome.
I’m 74 and I answered not at all/very little. I did not have diabetes until age 57. I am type 1. It did say everyday is not perfect.
I’m 70 and have had T1D for 56 years. I do not suffer from burnout at all. Yes I get annoyed at the surprise highs and lows and associated alarms but after this long it’s just a part of life. I deal with it and move on.
I am nearly 70 and have lived with T1D in my body and in my self awareness consciousness since I was 8 years old. I have mastered dealing with it everyday because that is what I must deal with everyday.
My T1D is usually under tight control. Now I seem to be dealing with some gastroparesis. Stomach aches and corresponding blood sugar rise during night. Plan is to change diet especially dinner. I already eat early. But now need to change diet. Again
I selected very little. I’m rarely burnout to the point where I neglect myself, but I am frequently annoyed! Sometimes the combination of work, life, and T1D is A LOT. Have been known to mutter “shut up, I hate you!” and repeatedly snooze CGM alarms overnight. . l don’t carry guilt about my wonky BGs just try to learn from them and do the best I can. I have A1c of 7.2% and no severe lows for a while, so I call that a win.
Remember, for “normies” balancing blood sugars takes a million functioning islets and hundred of intricate molecular signals and feedback loops. I think everybody here deserves a trophy for keeping ourselves alive & managing our own sugars with insulin, devices, brain power, and perseverance. 🏆🙌
I’m too tired to answer this question the way I would like to. But, that “tired” (related to deficient B12) also affects how I feel about diabetes.
It is quite the tangled web we weave (and walk through)!!
I was feeling overwhelmed by EVERYTHING, not just T1D. So I am feeling much better now about EVERYTHING after telling my PCP I felt depressed and this resulted in 1) getting referred to a counselor 2) an online coach 3) an online app for cognitive behavioral health 4) and a different antidepressant that seems to energize me more. Getting my mojo back now. Every 4 to 5 years I seem to need a tune-up to prevent burnout. BTW I’m setting aside time each day to play for 30-60 minutes, e.g., playing online Klondike solitaire or doing crossword puzzles or word games.
I’ve been burned out for a very long time.
When I was diagnosed at age 8 my endocrinologist said that I likely wouldn’t live past my teenage years. I’ve been a bit stressed ever since, feeling like the diabetes was waiting around the corner to come get me. Maybe it is the anxiety that type 1 causes that really wears me out sometimes.
Lis, I was given 10 years of life by my doctor when I was 23 years old. I’m 70 years young now and still kicking. Forget about what that endo said when you were 8.
You want diabetes burnout? Watch this inspiring brief set of videos from 1996 Olympic Swimmer BEFORE CGMs: https://www.chop.,edu/video/gary=hall-jr-life-athlete-diabetes
How could you not have burn out. We fight with our bodies every hour of every day attempting to stay as healthy as you can.
I answered Not at All/Very Little because I have a handle on my diabetes after living with it for nearly 70 years. IMHO what causes Diabetes Burnout is dealing with TID cluelessness from insurance companies and lack of T1D awareness from clueless health care providers.
Burnout only affects me it seems if I am sleep-deprived, or out of control (before CGMs)
I answered “a lot”. T1D 56 years, pump for 23 years. My diabetes management challenges are due to outside stress I’m under due to multiple family members with severe health problems. I am struggling to be a caregiver to 2 people in addition to myself.