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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If you have experienced diabetes stigma, in what situations has it happened? (Select all that apply.) Cancel reply
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In the 1970’s (prior to the Americans with Disabilities Act of 1993), when the hiring official had a type 1 diabetic wife. He thought that every diabetic would be as problematic as his wife.
In the 1950’s when a cousin of mine thought I was afforded all sorts of privileges for being diabetic.
And, last, but not least, throughout the medical community over the decades. A poignant example being the physician (physician!!! of all things) saying to me in 1973, “Why are you going snow skiing this week end instead of staying home in your wheelchair like a good diabetic?” Arghhhh. ヽ༼ ͠° ͟ ͜ʖ ͡° ༽ﾉ
I haven’t really had any of this, but my coworkers freaked out when I got a drink in my windpipe once. They thought it was diabetes-related 🙂 I’m just glad they actually cared.
I have not experienced diabetes problems in public for many years, but I was diagnosed in 1945. In the 1945-1995 era I experienced many problems including most of the situations in the list. After starting fast acting insulin in 1996, and knowing about carb counting, I had much better diabetes management. With the knowledge and the devices we have now, I do not have problems while in public.
I find this to be true also. Most of the diabetes stigma issue happened many years ago. Not so much in recent years.
I’ve had a coworker suggest I eat bread to soak up the high blood sugar. HR has told me to walk or take public transit to work when I couldn’t drive because of a low blood sugar, so I wouldn’t be late. There wasn’t public transport around and the walk would be an hour long. Had a new endocrine not believe me when I said I had type 1 for 15 years. She demanded a test to prove it because she thought I had type 2 this whole time. Things I can laugh at now but weren’t very funny at the time!
Diabetes stigma is not something that I consciously think of. When it does happen, I don’t think, oh that’s diabetic stigma. But, occasionally, it does raise it’s head in unexpected ways. I’ve been told more than once when showing up to a doctor’s office (by nurses), “you’re not what I was expecting.” I take that meant because I was in good, trim, physical condition. I’ve been told more than once that I should not be eating something with sugar in it. A lot of people don’t realize that sugar occurs in most foods, in different ratios, of course. I’ve had people misinterpret what my insulin pump is. I was asked twice, at work, if I was tape recording our conversations. I’ve been asked if my pump was a cell phone, or some other electronic device. I’ve had a relative refuse to get in a car if I’m driving. But, these things are here and gone in a flash, and really are not given a second thought by me. I don’t get flustered by other people’s misinterpretations. On occasion, I give an explanation to clear up a situation, if needed. Other times I just ignore comments.
I would be LOL if someone said the tape recording comment. to me.
I answered “with friends I regularly spend time with” and “family”, but is it stigma or just ignorance when others don’t realize the difference in how I manage my type 1 diabetes compared to all the airplay type 2 diabetes drug management gets?
The only thing I really remember in a negative way was my mother’s neighbor, a quite well know doctor (walter Bortz Sr) used to always ask me from the time I got T1d until recently “How’s your sugar?” Just pissed me off no end. Perhaps because of the condescending way he said it . Haven’t seen him since my mom died.
At one of my first jobs a long time ago, my supervisor made me walk to the HR building, which happened to be a 20 minute walk each way, to check my BG. Okay, this wouldn’t count as a break since it was mandated, so in nice weather this was fine, not to fine in inclement weather. And, of course, coworkers bitched that “I got too many breaks. I became a RN, and worked in a hospital. There too, even though I had my own office, they wanted me to go to the ER to do BG checks because of “biological waste” issues. Mind you, I, of course had a biological waste container in my office. The stupidity of people never ceases to amaze me.
I’m 67, retired, and don’t have a lot to lose or be impacted by others view of my T1 status. I’ve been up-front with anyone who’s opinions I care about or value. Given my situation, I figure its best to be up front and try to educate those that don’t understand, so others that DO have something to lose or be impacted by have a better chance of not being impacted. That said, I did have an experience at a hospital out-patient procedure that I couldn’t get ANYONE’S attention on my T1 status or answer how my BG would be tracked while I was under anesthesia. Even the nurse about to plug me in to hydration didn’t understand my concern of what was in the bag. I finally told the folks, loudly and unequivocally, if I didn’t get some answers, I was walking out…THAT finally got me the needed attention and information. When your life is on the line, don’t be shy!
I, too, am retired and feel much the same way during very similar situations. Well put.
Employment screenings
I think we all have biases about other people and illnesses and all kinds of things and we like to distance ourselves from any kind of illness or imperfection and I understand that many others may discriminate against me because of their biases
potential employment screening….. almost 60 yrs ago now…. same potential occupation now allows diabetics. Times have certainly changed for the better.
Only once did I feel stigmatized and that was while in the hospital and by the nurses. Because of overcrowding, I was in a bed in the cancer wing. More than once, I overheard nurses complaining that with my needs I should be in the diabetes wing and I did feel like I was an intruder and causing them trouble.
For a few years, I wasn’t invited to after-work events. I realize it was because they worried I “might be tempted” to eat/drink something I shouldn’t. Once I explained that I had been living with T1D for decades, and it was the comaraderie that was valued, I’m happy with a cup of coffee, the comments stopped.
I did have one laughable situation when a manager insisted I go to my car for bg checks. “hazardous waste” concerns. A colleague piped up from the other side of the cube wall “should be schedule our papercuts to to happen in our cars?” Loved that guy. And one less amusing was a mid-level manager complaining about my getting a promotion, saying that I wasn’t reliable nor responsible. When asked why the explanation from the mid-mgt person was basically they knew I had T1D and everybody knows diabetes is self-inflicted. (I did get the promotion. I like to think it is because I deserved it, but the upper mgt person to whom the “petty” mgr complained was married to a person with T1D – maybe?…)
In grade school in the 1950’s from ignorant school administration and some teachers, many employment interviews, in a Wisconsin state employment agency and from incredibly judgmental medical staff.
“Stigma” is subjective. I defined it very broadly and would say I have experienced it in virtually every situation in which people knew of my diabetes. That is because it is extremely common for people to be fairly ignorant of the realities of living with diabetes, especially type 1, especially with pump therapy; combined with the fact that these same people fairly commonly think they DO know about it and many are quick with questions, advice or admonitions. So it’s stigmatic and the public gives us ways to know they stigmatize it. I have learned not to let this bother me and usually, not to bother trying to enlighten anyone other than a close friend who is genuinely curious.
I was in my late 20’s when diagnosed as a Type 1 in 1976. I was already established in my career that would last another 20 years. I never hid the fact that I had diabetes and continued to receive promotions and succeed in my career path. I do not feel I experienced any stigma as a result of diabetes. I did discover that many have misconceptions about diabetes and used my experience to help educate them whenever the opportunity presented itself. Diabetes did not prevent me from achieving my career goals or participating in activities (like downhill skiing) that I was passionate about. I am now happily retired.
I have not experienced diabetes stigma, but have received stigma due to other medical conditions in most of the above situations besides my immediate family. We are close and supportive.
The most impactful stigma was while working with a non medical doctor researching my medical condition. It simply reminds me that besides ignorance, we all have prejudices, some of which are built into our brains from birth. I trusted my mother more than other females as a baby.
I have never, in the last 33 years with T1, experienced any stigma. I haven’t really even thought about it as I couldn’t think of any reason why there would be stigma in relation to T1.
I had a psychiatrist insist that I gave myself T1D. When I questioned this she sternly told me she had a nephew with T1D so she knew what she was talking about. Both appointments with her were appalling. She was judgmental and treated me like a whinger.
The most annoying comment in a type 1’s life “should you be eating that?”
I have never RECOGNIZED or experienced any stigma in my life situations. Probably because no one knew what diabetes was in the 1950’s, so teasing me about it never occurred to kids at that time.
Growing older,again I don’t remember any experience of any resentment or stigma in school or work situation. And now I’m 75 years, I can say I haven’t felt anything but my own irritation of dealing with T1D.
Very little. I am very up-front about it and have been since I was diagnosed at age 9. If someone asks or thinks I’m shooting up I explain. I’ve never hid anything about it and use every opportunity to explain it to people, INCLUDING the newer tech advances with doctors and nurses who often (horrifyingly) don’t know much about current options for tracking and treating. as a kid I had my own sense of stigma aimed at myself, thinking there was something wrong or bad about me that caused it, but at the same time I was never shy or reticent about sharing info. I’m sure that’s a lot to do with my parents attitude.
Once with a coworker and a couple of times in early childhood with classmates. I also chose “Other Context”. There is a HUGE problem with hospitals’ management of T1D and T2D insulin dependent diabetics in a hospital environment. Hospitals often use a single treatment plan for all diabetics, frequently remove pumps and do not allow conscious patients to manage their own BG and dosing.