Sarah Howard
Sarah Howard has worked in the diabetes research field 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 Marketing Manager at T1D Exchange.
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Have you experienced any life transitions during which it has been particularly difficult to manage T1D? Select all that apply to you. Cancel reply
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Diagnosed in 1951 when I was 6 years old.
And I was not quite 5 in 1950…small world back then and now there seem to be SO many children diagnosed with diabetes.
I have experienced all ost all the above, not pregnancy, but T1D has not made any significantly more difficult to manage. T1D is just always there, rather a nuisance
I answered none.
Being diagnosed with T1D is like trying to build a house of cards in a stiff wind. The beginning is impossible. So you move into a tent or shelter. That includes education, training, technologies of CGM, pumps, smart pens, and the like.
It is always impossible as a T1D and the cards can blow away at any time. Perhaps the word “difficult” should be replaced with the phrase “impossible, but . . .”
I would call it a situational depression, that was the hardest time for me I kept having low blood sugar. fortunately I pursued help right away and recovered very quickly.
Serious operation
I was diagnosed in 1955 at age 9. No way to check blood glucose (urine tests!) or no doctor who really knew how to treat T1D for many years. So during most of my life transitions including pregnancy my diabetes was really not well controlled. In the late 1980s things changed with glucose meters and a great endo. I feel really fortunate that I am still here and doing fairly well!
My problems were caused my being diagnosed so long ago, in 1945. There were no glucose meters, pumps, and modern day insulin like we have now. Pork insulin was a life saver, but I had very unpredictable blood sugar numbers. Diabetes management was so difficult! My doctors seemed to know very little about diabetes.
I became a diabetic about 8 months after we got married. Dealing with low blood sugars was shocking for both of us. I felt that my wife did not get what she signed up for. But, she has stayed with me and helped me through many lows.
I would say the initial adjustment to T1D was difficult. But, we got through it.
Moving to a time zone 12 hours different from the previous really creates problems for a while. Also, when I reached adolescence, I assumed wrongly that “those” things would never happen to me, and I became lax in my treatment and monitoring.
A lot of these life events took place before I had a pump or CGM, so I could answer all of the above. Who knows if it was the lack of diabetes technology or the stressful events that made t1 difficult.
Having heart bypass surgery
1969. Junior year abroad in Bordeaux, France. On long lasting U-80. Postal workers went on strike and didn’t get my insulin. French doctor told me U-40 would work the same. three days later, DKA and a week in a French hospital built in 1840. They almost finished me off. My insulin came in the mail, my friends brought it to me, and I snuck out of the hospital a day later. I was 19, and knew virtually nothing about diabetes. Got in 1963. What a time we’ve had!
Feels like being over the hill will be a challenge to overcome or at least cope with. Different stamina, stressors, coping techniques. It definitely is something changing but not quite sure what to put my finger on/go after or accept and move on.
Six months before dx’d at 55, we retired and moved! I answered none of the above, however, my husband had lymphoma during T1D. He is cancer-free!
Chose “other”. One of my children is considered severely disabled (developmental disability) – due to her lack of speech and inability to help others understand ‘where’ her severe pain was coming from – We went through approx. 7 years of horror – with my child in pain, screaming night and day. Sent to various specialists at local children’s hospital, who would do one or two tests then say ‘it’s not something to do with this specialty – test is negative. Good bye.’ Leaving us continually in a state of incredible stress and anxiety. My A1C was running continually around 14! Just couldn’t get my BG under control. Decided to go on the insulin pump – and regain some control over my T1D. (The only thing I could ‘control’ at this point in our lives.) This was about 5 years into the horrible life situation we were in. My A1C, after just 3 months on the pump, was 7.2, even with the on-going stress…. Ever since it has remained around 6.5. (As an aside, about 2 years after getting the pump, we finally figured out what was wrong with my child, and a better norm returned to all of our lives (despite being continually challenged by my child’s developmental disability and health issues).)
Have to say it is like a bad joke when the medicos continually say “you can’t live with this much stress.” like I can wave a magic wand and make the daily stress, through will alone, disappear. Ha!
Sepsis made it almost impossible to control my diabetes. This was only months before glucose monitors became available for personal use by diabetic patients.
Until the blood-borne infection was diagnosed, I was repeatedly told that my physical problems were due to bad blood sugar control. In other word, “Go home and straighten out!”
Changing jobs/moving: my husband separated from military and we lost insurance for a year and a half and I was unable to stay on pump. Was maintaining an A1c of 8.4 on MDI during that time. I enjoyed the weight loss, but not at the cost of my health.
Also, moving makes me run low from all the exercise.
And pregnancy made me extremely insulin resistant. All 3 situations were hard, but no insurance was the hardest.
I checked most of the list. I think both adolescence and pregnancy were the most difficult, so far. Dx. at 8 in 1955. The MDs told my parents, if I/they followed all the rules, I might live to my late 20’s, early 30’s. Having relatives who had died from diabetes, most before or without access to insulin, my parents chose to micro-manage my life with a strict schedule for almost all activities. By adolescence, the 24/7 of diabetes, compounded by too frequent medical staff lectures on the horrible consequence of “non-compliance” created major depression. Leaving for college half-way across the country helped. In 1970 my pregnancy was under the care of an OB who specialized in “high-risk” but was I still without the ability to self-monitor glucose levels. Six weeks early I was admitted to the hospital with preeclampsia. Very fortunately, our 7lb. 15.8 oz. “preemie” daughter and I were able to leave the hospital together four days later. My current endo thinks that was the beginning of the chronic kidney disease that I’m now dealing with.
Interesting. I had preeclampsia 5.5 weeks early and gave birth to a 7lb 12oz “preemie” daughter.
I’ve experienced a ton of these life events recently but my blood sugars have tensioned fairly stable!
I answered other. For me, I was tailor-made to handle T1D. Very self-disicplined, nubers oriented, raised to be a ballet dancer (hence very careful, wary of eating) etc. About 15 years ago (I’ve had T1D 40+ years) my partner was Dx’d Bipolar 1 with anger-mgt issues. Major life change for me – I had to learn to skate opn thin ice 24/7 or walk on egg-shells 24/7. But, it reminded me that at least with T1D, I am in control (essentially – we all have rogue numbers etc). I just added “ducking and weaving” to my lifestlye.
Everything for a Type 1 diabetic is management. Caregiver for aging parent,with dementia, just threw me for a loop. Extra care for everyone concerned. Hardest time of my life in all aspects.
Very worried from pressure of 3 day daughter wedding in another city. Hoping 780g will be available or G7 at minimum
Menopause was a nightmare for me.
me too
I am now a Senior Citizen and my memory is failing. Occasionally I forget to bolus and then have to deal with high blood sugars. I do not like to bolus right before I start eating as I am not always sure how much I will eat.
Had just struck out on my own and started my own business 3 months before diagnosis, helped place my grandmother (95yo!) into hospice 2 weeks before diagnosis, and then she passed while I was in the ICU in DKA.
Brain tumor surgery (benign), kidney transplant
I didn’t actually retire, but I did go on Medicare. Moving from private insurance to Medicare was quite the challenge. I could not get pump supplies or insulin. I did have a reserve of insulin, but I had to buy syringes and walk around with a bottle if Humalog and give myself many injections throughout the day including getting up in the middle of the night to inject. All of this because Medicare made me go through all the tests to prove that after 25 years I was indeed a type one diabetic. They would not take the doctors word for it or look at previous lab work. Such a waste.
Ahh..Medicare
I should have included that as well.
I agree. Medicare is much too bureaucratic and creates unnecessary stress in my life. It does not necessarily make life easier.
I had a teen who was wayward in his behaviors. It was very difficult to focus on my own health when I was trying to save his. We both made it through but it was a very difficult time.
Being a victim of a stalker/domestic abuser/ex-boyfriend really made it hard to manage my diabetes.
So did having some major illnesses that were totally unrelated to diabetes. So far in my 61 years of diabetes my kidneys are totally healthy and unaffected by diabetes, and so were my eyes, but at the start of Covid I was diagnosed with Age-related Macular Degeneration. I have been losing my vision from this disease and it’s hard to accept that this is the cause unlike if I had had retinopathy instead.
Menopause was tough
All of the above, T1D is part of your life, it’s with you always.
Diagnosed in 1966, T1D is a daily challenge. I was struggling during adolescence as I lived in a rural community and was the first child T1D in the area. I had anger issues with my doctor because he would order Saturday fasting blood sugars; then add insulin until I got lows and convulsed.
8 years of Saturday FBS then I went to college, found a different physician, and life improved. Thank the creator that technology moved on. I got the first Ames Glucometer, and life continued to get better.
Still venting. Thanks for listening!
All of these….. plus menopause, stress (physical, mental and emotional), and illness/surgery as I age. It’s ALWAYS difficult to manage my brittle T1D. Just sitting still makes it difficult these days to keep sugars under control.
I have had many life transitions: university, multiple inter continental moves, job changes, as well as periods of regular travel around the world, but I have never had any big difficulties managing my T1D. With good planning everything has always worked out ok.
Any time I have a very stressful event coming up to manage.
*Pregnancy/nursing – I underestimated how significantly my insulin requirements would drop with nursing.
*Working under deadline – stress hormones + sleep deprivation + stress snacking with less mindful insulin dosing often leads to highs. *Traveling – lots of walking + indulging in new foods with uncertain carb content (my fav part of traveling!) can lead to a roller coaster. A “backpack o’ snacks” is a must.
*Perimenopause – hormones strike again! Once fairly predictable patterns of insulin resistance one week prior to period start are now full of surprises. Sudden severe lows were a surprise that prompted me to use my a CGM again.
The stress of divorce and trying to transition everyone to two different households (with two little kids) had a funny effect on my T1D. My background insulin needs nearly doubled but I lost like 7 pounds. It was go-go-go for 6 months trying to juggle everything (selling house, getting kids where they needed to be, moving twice, etc.). Once the dust settled, my background needs quickly dropped back down to my pre-divorce dose.
The hardest transition for me was being diagnosed and the year of treatment (chemo, surgeries and radiation). Going away for nursing school, loss of loved ones, break up’s with boyfriends, etc. were hard but I always managed to get my sugars back in control within 24 hours. Breast cancer, even 5 years after being diagnosed, is hard with medication I must remain on yet.
I had a lot of trouble managing my blood sugars the entire time I was a social worker. The stress of the job was immense.
I had to retire early because I could not manage my diabetes and do that job any longer.
I am so lucky. Single, living alone (had a variety of roommates), very OCD. While my diabetic control was generally acceptable (for standards set) with minimal influences from anything other than self inflicted, I’ve only periodically had bouts of poor control. Death, changing jobs, moving, even stress of violence (should I admit I moved from a crime riddled area?) had little effect on my control. Mostly it wad my own inaction that had that effect.
I was diagnosed in 2016 at age 38. I had no idea what was happening to me and assumed the exhaustion and other symptoms were somehow related to my wife and I caring for our first Child. I was diagnosed in September, and my 1st was born in April, so it was a few rough months of not knowing what was happening to me. At first, we thought it was Cancer and were relieved to get the T1D diagnosis – at least you can live with it, right? Since 2016 we’ve had 2 sets of twins, one set in 2018 and another in 2021. Being a parent to five kids under 7 is hard, especially with T1D added to the mix – it’s crazy, but we’re managing.
Why isn’t menopause an option? Women’s health is actually a thing