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.
Burnout is not the word!! Frustration, sure, but life isnt a bowl of cherries. Most frustration would be for everyone if non diabetics were looking at their glucose every 5 minutes. Someone whose not a diabetic does not have glucose at 120 all the time. They go up and down also. I know people who have only lived in the era of social media think that, but it is not human.
YES!!
None of these really describe me. I try to be as conscientious as I can, and when my blood sugar is erratic and I decide I might as well let my husband order pizza, I do what needs to be done to fix any problems. I do not feel one iota of guilt about my blood sugar. What is wearing me down is the continued ignorance and pig headedness, not the checking blood sugar and taking insulin. If I can accept that I will always have LADA, why can’t doctors and nurses? Why do they keep rewriting my chart to say T2? Why do I have to repeatedly fight to maintain access to insulin and CGM? 18 years and I am sick of this crap. I am spending this week fighting again to make sure an insulin prescription is on file.
I just get tired of the same old stuff, all the energy I have to put into it, every damn day. I am managing it quite well, , but some days the prospect of a long life -after 60 years of it already, seems pointless. So I go out and rake leaves, or play with the dog.
Your sentiment about thinking of the prospect of living (& dealing!) with it forever really stood out to me. I often find myself thinking of that and feeling hopeless (then I just bring myself back and think “one day at a time”)—thanks for sharing!
I have multiple health issues to deal with along with T1D. So the tiredness is something I deal with daily. I just have to decide what I’m going to spend my energy on daily. Burnout? I just take a nap! 😁
It’s a royal pain in the butt
so is brushing and flossing my 90 year old teeth!!
Every once in a while I get down about the daily grind of constant awareness of my diabetes. I can’t just drop everything, and go out and do something at a moment’s notice as a non-diabetic would. I have to consider blood sugar levels; do I have enough carbs and proteins in my system to do this activity?;
Gastroparesis – how long will it take to get my blood sugar to the level I need it to be?;
Celiac Disease – no sense in going out to eat … Does this item gluten in it?
Asthma – Can I do this activity without struggling with my breathing?
It’s just continuous, 24/7. No breaks.
But, we all just push it to the back of our minds and keep moving on. I try not to think about everything and just keep pushing myself forward. It’s not bad if I don’t spend time thinking about it.
LIFE IS GOOD. It beats the alternative.
YES !!
It’s been 30 years and I don’t remember life before it so it just seems like a part of my normal, everyday existence.
69 years for me and I feel the same as you..
When I experience burnout, I usually keep a handle on my management, I just also break down and cry because I can’t be perfect
My self-assessment comes after a prolonged period of frustration and disappointment. Frankly, CGM and Control IQ have finally allowed me to achieve A1Cs of <7.0 without the realistic fears of lows. I would add that this comes just in time, as the challenges of “aging” and surviving diabetes for over 48 years requires intensive health maintenance and medical interventions: eyes, kidneys, teeth and gums, neuropathy and more. To my fellow diabetics, never give up and push your care teams for creative remedies. We survive because we are tough and more importantly because we are smart. Best wishes.
Right now I have a planter plate tear so moving is hard which definitely makes my diabetes hard because I can’t get the exercise I need to help with Blood Sugar control.
I now have T1 Diabetes for fifty two years and I have been using the Freestyle Libre 1 for the last two years or so and it makes living with Diabetes a good bit easier with my BG Hba1c improving from 7.0 to 6.7 and I also have improved my intake of foods with a lot with a lot of antioxidant laden items included in the diet. I am very active also with many physical work exercises to do I plan ahead with gardening, walking and I am part of a harmony singing group that involes competition singing also. So with four grandchildren visiting me every so often my life i a happy one, I dont allow any negative thoughts or feelings to let or get ‘Diabetes Burnout’ in my life, I don’t have time on my hands to entertain that kind of thing.
I used what little was left of my savings to pay for a Tandem pump in May, 2020 because I was so tired of the daily glucose roller coaster. The 2+ years of isolation because of the pandemic definitely added to the 24/7 burden, but Control IQ paired with the Dex G6 has prevented a full blown case of burnout. I’m living life, that includes 67 years of T1D, one day at a time.
There should be an “other.” so I answered “somewhat”, I have never felt I have a really good handle on control and most of the time I live with that fine; don’t have what I would ever describe as “burnout”
Everyday is a challenge for me trying to manage my diabetes. My body refuses to absorb insulin normally on many days and I must force it with sitting with a hot water bottle on the injection site or rubbing vigorously off and on through the 4 hours that it’s viable to make it work. But that being said, I do not allow burnout. I don’t see it as an option, not to be doing my best at all times to manage my sugar. The alternatives are just too scary and unwanted to ever allow myself to get to that point. I used to work in a hospital drawing blood and when I went to the diabetic floors, I saw all the horrors that can happen to people with uncontrolled sugars. I’ve been doing this for 45 years now and I will strive to do my best everyday until the day I die or I’m no longer able to do it myself.
Needless to say, diabetes management is a constant battle that never allows for a vacation from involvement. While it gets tiring to manage this disease day after day, right now the only option is stay focused on doing the best you can and to live a life that is not limited or diminished by T1D… Stay Strong.
THERE WAS NO ANSWER FOR ME. I handle my T1 better than anytime in my 52 years of it due to the great tools available. BUT I have severe mental and emotional burnout. I carry on through it but everyday feel as if I don’t want to go through this one more day. Yes, I have depression and anxiety and complications.
I notice there are several long term T1’s. I think there is a gap in care. The daily minute by minute challenge of T1 usually becomes more difficult with the aging process especially those of us who are not fortunate enough to have a partner. The gap lies in WHO IS GOING TO DO ALL OF THIS WHEN I CAN’T? Physically and financially. If you end up in a facility it’s basically 1 injection/day and good luck.
Started age 21 years… now age 90… NO T1D complications… Have AMD that started about 4 years ago, and that REALY bothers me !!! Takeing insulin and watching diet is NO problem for me!! Started CGM 16 months ago.. Just use syring… no other gadgetss etc.. I guess I am just one of the lucky unlucky T1D’s..
You are amazing!
It took over 11 days and 15 phone to the doctor, the insurance, and the only provider to work out the renewal of my CGM sensors that I have had for over a year and am now completely out of in spite of my best efforts and a lot of tears. Delivery will be another two days.
Burnout does not affect me, although depression in general does at times.
It does not lead to managing my diabetes in any incomplete ways as I do not want to suffer the consequences of complications as that would only add to feeling worse.
I usually have about one time a year when I just get overwhelmed with all of it and I don’t want to manage my T1D anymore. It usually lasts a few days up to a week. I then can go back to the low-level annoyance with all of it. The management assistance with technology and better medical staff over the years has helped a lot to make it more of a bother than a daily struggle.
After 68+years of T1D, burnout is a natural occurrence from time to time. My frustration usually comes from NOT UNDERSTANDING WHY my body changes its insulin needs so ABRUPTLY when I don’t alter my diet or exercise!
I was told years ago that diabetes is a messy disease! Why do
I always have to prove it!!!
I chose the first option, even though I do not feel a “Solid handle” on my diabetes. Most days are ok, and am not affected by burnout on a regular basis, despite having Type 1 for over 50 years.
My T1D burnout is due to the multiple alarms and the failure of a pump to handle my brittle diabetes stress rises in BG. My major burnout and lack of good control is due to caregiving an elderly relative (not my parent) and the challenges that go with that responsibility. This stress has worsened my control. Up until then I had virtually no T1D burnout.