The stigma of diabetes

General
#1

Have any members felt the stigma of having diabetes? I have & did beginning as a child. For most of my life I was very secretive about having diabetes. I’m sharing an upcoming event about the stigma of having diabetes for others who have had similiar feelings.

On October 13 the diatribe foundation d20 is sponsoring free onl8ne Lightning Talks on Diabetes Stigma. Networking begins at 5:00 PM Eastern; speakers at 6:00 PM Eastern. Registration is required. Online registration is required. The link is -

1 Like
#2

Henry @Hen51, thanks for posting the link. I suspect that many here will be interested in listening, and possibly benefit.

To answer your question, have I felt the “stigma of diabetes”? I don’t know if it was stigma, or more probably insult or challenge. In January 1960, after having just left college, I accepted a position with the Prudential Insurance Company in Boston. On my first morning at work, while being in-processed, I had to complete my medical and life insurance employee applications; I was honest and entered “diabetes” in response to a particular question. I was called into the head office and fired because, as I was told, they didn’t want to “train a diabetic who was just going to die on them”. Okay, I took this as a challenge, and somehow omitted entering “diabetes” on future forms/applications.
Did I get revenge? Possibly. I took an actuarial position with The State Department of Banking and Insurance. became a Senior, and later Principal auditor regulating insurance company STRICT compliance. Later in 1990, the US Senate asked me for some in-put on proposed legislation - by this time, I no longer “hid” my diabetes. You can see my contribution in P. L 101-336, the Americans with Disabilities Act. “Autoimmune diabetes, A Type” is the ONLY condition in that act identified by name. “A Type Diabetes” has now become known as TypeOne.

7 Likes
#3

Dennis, Thanks.
I know how you felt to a certain degree. Who can say how many places individuals have been rejected for being honest about having diabetes. However to be hired, fired & told the reason you were told qualifies as an entry in nightmare firings.

ADA contribution is impressive. You struck a positive blow for all T1’s. I intend to look it up.
I’m looking forward to the presentations on stigma.

1 Like
#4

Thanks in part to Dennis’s work, in filling out applications I’ve found that identifying as a diabetic is an option you can accept or decline - it may be a requirement in certain industries but none I work in. If the company had on site health care I let the nurse’s office know, and life insurance was separate from the hiring process so I’ve had company life insurance in the past.
I’ve never felt a stigma related to diabetes: anything it’s more a lack of knowledge and understanding and I take the opportunity to let people know a little bit about it (as time allows).

#5

Yes, I had a very bad experience with this about that time. I got working Foe4 Bell Labs (AT&T). I went to work in April 1984. Before we started doing a fast move there 10 days after being hired by phone I went in for the pre-employment physical with the company doctor. He came steaming in and told me I had a high bg reading, and If I WAS a diabetic why hadn’t I warned them ahead of time. SO I told him to look in his mailbox, since I HAD filled out and signed the medical form that “warned” them of my condition. I also explained that my reading was high beause I had been living in hotels with the normal high carb poor nutrition there. He settled down and let me go to work.
Then 4 years later, after making amazing progress in the job I loved, getting recognized for it up to 1 layer below the VP of AT&T. I expected to be treated so on the next review, it got complicated. They were doing a physical on Monday morning with fasting blood tests. I didn’t do fasting blood tests since in those days I didn’t know if I could be safe traveling before breakfast, and I told him so. My bg came back 413.
Then a “Mentor” went and asked the Dr. what my bg reading was, and he TOLD him! So then he got talking me down to everybody there with all kinds of horror stories abiout my health being terrible. After 4 years without needing ANY assistance with it. So then they eliminated my job as being “no longer necessary” since shrinkage had set in with the breakup. They reassigned me to ru an injection molding machine, aand a week later the company doctor said I couldn’t do the job because I would “Faint fall over and hurt myself” on the hit machinery.
They stuck me in an office for 6 months with absolutely nothing to do, but I refused to let them win be getting rid of me. Eventually they allowed me to go back to work rebuilding a special machine that I knew more about that anyone else there, and I kept working. My annuual review that year went for above average to 19% above useless, and they told us we should write resumes for ack of future there. Again I refused, and spent 5 more years there doing menial work, while holding ratings at about the same llevel.
BUT during this they had a special sale on home computers and I bought 1, with a modem. I found COmperserve and started talking with diabetics everywhere about our problems and eventually became expert on most things that can happen to any Type of diabetic. Then I also signed up with the local JDF club and became their newsletter editor, so EACH edition had an article saying the 400 member families needed to call their Congresscritters to urge it’s passage, which it finally did, shortly before they finally laid me off in a sweep, but the place was being folded up. Of course it went into effect too late for me to apply against this abuse. So I have spent 34 years helping any diabetics I could reach.

4 Likes
#6

I believe your experience has been more the norm.

#7

Tedquick, I read my first reply to your post. Not sure that I was clear. Although not all of us have been through a horrific experience such as yours I still believe your case as shared has been more of the norm for T1’s. Usually discrimination has been more subtle. You had to prove yourself the hard way! Hopefully the ADA will give diabetics a chance to prove themselves without doing it the hard way. I would also hope that the ADA frees T1s from needing to hide the disease for fear of repercussions with employers. I spent a lot of energy & felt stressed hiding mine.

#8

I’m a zookeeper. I’ve been one for 6 years now. And I was a veterinary technician for almost 3 years before that. I currently work with several, potentially dangerous animals ranging from porcupines to lions. I’m open about being diabetic at work, but what I say about it is always carefully weighed out. As supportive as my current team is, I still don’t want to scare them by admitting that (at this moment in my life, anyway) I can’t predict when my blood sugar’s going to go low, or that it goes low at least once daily, or that I blacked out several times growing up. They can’t see how hard I work to maintain my blood sugar every day or how often I talk with my doctors about my insulin doses and exercise and nutrition. All they can see is how well I do my job, so I must do it well. When I was first hired as a vet tech years ago a friend of my father’s scolded me for checking my blood sugar in front of my coworkers. He said I’d get fired if I kept it up. Luckily he was wrong that time.

In 2011 I had a two week working interview/internship at a private, for-profit zoo in California. I noticed while I was there that no one except me was eating lunch and I knew from past internships that it’s really important that I get a meal break for the sake of BG management. So I admitted to being diabetic at the end of the interview so that I could ask about the break policy and I was told that if I’m going to get sick during every emergency I might be in the wrong line of work. I went back home and then told them I no longer wanted the job. I wasn’t going to wait for them to tell me they’d chosen the one other applicant. Even if they had hired me, who wants to work in a hostile environment for a bigoted boss?

Going back even further, in grade school I was given special accommodations for standardized testing. Through my second year of high school I was allowed to have snacks during the test.
Any time I took an exam at my high school I was always assigned to the same proctor. She knew who I was and what I needed and just sat me at the back of the room so I wouldn’t distract the other students. No fuss. No bother. No extra stress on test day. But junior year (2004) I was granted the option of making up time lost due to bathroom breaks, so when I had to take an exam at the fancy private school instead of my own public school, they put me in the room with all the kids who get time and a half. The room for my half of the alphabet was big and airy with lots of natural light. But the room for the “special” kids was in a basement and had exposed pipes all along the walls and ceiling. The proctors gave me the wrong exam and didn’t believe me when I told them so. They tried to give me the SAT I for people with poor eyesight or dexterity, with the big print and big boxes instead of little bubbles. Then they kept interrupting my test (the SAT II writing exam - concentration matters!) to pat me on the back and say “everything going ok, honey?” And they gave me no indication of how my time was being recorded so I kept watching the clock instead of focusing on the exam. It was humiliating and frustrating and I felt so guilty for all the years I was in the big, beautiful castle while all those other kids were locked in a dungeon with two trolls. I told my usual proctor about the experience when I went back to school on Monday and she was just as appalled as I was. I’ve never had a testing experience that bad since, but I’ve been denied accommodations almost every time I’ve asked since then. No snacks, no glucometer, no extra time.

So, yes. I have felt the stigma.

1 Like
#9

Thank you for sharing your experience. I hope others will share after reading your experience & watch the presentations on Stigma & Diabetes. Your post as well as those of others touched me.

As a boy I had an ever changing list of jobs that I’d hoped to do one day. Yes, fireman was on the list. My mother tried to prepare me for life by gently telling me which jobs I would be excluded from bc I had diabetes. Jobs such as flying an Air Force jet or becoming an airline pilot. I would be disappointed but adjusted.

Of course from 1st through 12th grades the school nurses & teachers knew that I had T1. I sometimes needed to use the restroom frequently so that permission was automatically granted. In 4th grade my teacher took groups of 4 - 5 students to the public library to select books for the classroom borrowing shelf. I was never chosen nor told why I was not chosen. Finally in the latter half of the year my Mother did something which I hated. She called my teacher. I was then chosen for one of the last trips. There were other cases of undeserved discrimination from this teacher. In hindsight I believe he resented having a student with T1 in his classroom. My diabetes became his burden.

I lived in a small town so many mothers consulted with my Mom before bringing in birthday treats for the class. Those mothers then provided a suggested alternative for me. However, I well remember when a classmate’s mother was distributing cupcakes and came to my desk. She looked at me and said that she knew I couldn’t eat cupcakes. Then she unapologetically told me that she didn’t bring anything for me. I remember feeling stunned for a second. The teacher who was within earshot did nothing. I can’t remember all the negative feelings that flooded over me. I do remember not allowing myself to cry & putting on a brave face while I watched my classmates enjoy their cupcakes. I may have cried when I went home at the end of the school day. Early in my 64 yrs of T1 I began to experiece the many stigmas attached to having T1. My reaction to stigma inasmuch possible was to keep my diabetes hidden. I did feel shame.

As a teen & young adult I had an inner voice telling me not to openly share the fact that I had T1. In college bc my bg could go low during physical activity I informed the soccer coach during tryouts that I had diabetes. I gave candy to the team trainer to keep on hand. I believe that I was the only freshman trying out for the soccer team who had to have a letter of approval from his doctor.

Everyone knows how important getting a drivers license is to most teenagers. To get my drivers license in PA it took forms completed by my doctor & 6 months to get approval from the state to obtain my learners permit & license. It is good to give or deny the privilege of driving if justified. I was 17 not the usual 16 yrs old when I passed the drivers license exam. If only thinking logically shame would not be present. Emotionally I felt shame. Most of my friends had their driver’s license long before I did.

In the paragraphs above I only give a few examples from my experience of stigmas attached to having T1. I think it was bc of my experiences that when I looked for employment after college I didn’t disclose that I had T1 unless it couldn’t be avoided. I was fortunate bc in 2 jobs where I had to pass a physical I was hired and within a year I was selected to be trained for management. I cannot speak to industry as a whole but I can speak to things I witnessed as a protestsnt pastor. When being interviewed I didn’t share that I was a person with T1. Certainly I hope it is a minority that there are churches which have discriminated against women & men with a chronic but manageable disease in both hiring & yes in firing pastors upon discovery.

I didn’t know all of the above was inside me! I hope readers won’t be offended bc I have shared some of it. I had forgotten most of what I have shared. It felt cathartic to share my experience of the stigma of having T1.The ADA is a big step forward in helping educators & employers move beyond discrimination bc of a physical condition.

I am looking forward to the presentations on Stigmas of Diabetes at diatribe.

1 Like
#10

Me too! As a kid never talked to anyone at school other than my friend who also had T1D.

2 Likes
#11

I didn’t find another one until 9th or 10th grade.

#12

I was diagnosed with T1D when I was 12. I remember a few years afterwards I worked at a restaurant and my boss CONSTANTLY checked on me to make sure I was okay, but to a point that it was excessive. She was in constant worry that I was going to pass out or something. I was very embarrassed at the time and I think this stuck with me throughout my life. I am now 37 and I don’t always open up about being diabetic, especially in the workplace. I think this has to do with how I was treated as a young teenager. I didn’t want people to judge me, worry about me, or think something bad was going to happen to me. I just wanted to be treated NORMALLY like anyone else.

2 Likes
#13

Welcome to the forum Travis! Yes, to be treated normally means so much. I think sometimes the “concern” people show just feels weird.

1 Like
#14

Hi Henry,
Yes, I have experienced Diabetes Stigma. In 1984 I applied for a position as a puppeteer and was accepted. One of my “soon to be” co-workers was afraid of my diabetes because I had experienced a severe hypo while out with her and a mutual friend. She told my new supervisor, who in turn, told my new boss, and the job offer was retracted.They said they spoke to the nurse on staff and were told I could not handle the heat (this was an outdoor amusement park attraction).
My manager at the park had worked with me for several years and knew this was false information. He found another position for me and the contract with that puppet show was cancelled the following year. I have always been grateful for him and the other department managers for their support!

Pam K
T1D 56+ yrs and counting!

1 Like
#15

There certainly is and has been for years a stigma surrounding people with diabetes.

I was diagnosed in 1959 at the age of 4. I am now 65. My father was a pediatrician. Life for the T1D was markedly different than what we see today. Those of you who date back that far know what I am talking about. You were testing (infrequently) urine glucose only. I did not have a blood glucose meter until I was 17. It was made by Ames, Took about 3-5 minutes for a result and was about the size of a small shoebox.

Dating back to 1959, most of us were treated with only one type of insulin (beef or pork) and took only one injection/ day. At that time we were still sterilizing our glass syringes.
I would prefer to use the term “closet diabetic” at least in how I dealt with the stigma.
As a child, I was very aware of fitting in and not being treated differently. I have 4 sisters who to this very day were not clear as to what was wrong with their brother.
I did at one point visit the diabetic summer camp and immediately did not feel comfortable being surrounded by only diabetic campers. Not the real world to me.
In kindergarten and first grade my mother made sure to keep orange juice in the “closet” for me should I suffer with hypoglycemia during the day. Only the teacher knew.
To some extent it was a simpler time. No blood glucose meters, no CGMs, no insulin pumps, no sharing blood glucose levels with parents, no multiple injections. It was easier to hide.
Was it the right way to handle the stigma? No.
Fortunately treatment and life is better now for all of us. Technology and medical advances have improved my life. I am thrilled that the T1D of today is able to share and come out the closet.

4 Likes
#16

Greetings from the Windy City.

I am joining this group as a type 1 diabetic (for 53 years). I am 61 years old, legally blind, deaf in one ear, have a 34-year- old transplanted kidney, and am missing a leg. I connected with this group to gain more insight into other people’s experiences with this disease and the latest updates on a potential cure.

I’ve given talks about my experiences and I’m now writing an irreverent memoir about them…how to create your best life possible and stay positive, despite terrible circumstances. The book talks about my death-defying battle with diabetes; my struggle to hold on to myself and those I cared about along the way; and my days as a designer commissioned by celebrities, world leaders, and other luminaries. Homes I’ve worked on have been featured on HGTV and NBC’s “Open House," and published in 200+ newspaper and magazine stories.

For the majority of my career I did not tell my clients I was t1d. Having developed retinopathy shortly after I started my business I lived in the constant fear of “Who would want to hire a blind residential home designer?” Or someone scheduled to have a kidney transplant in the not so distant future? Or, who went for hyperbarick oxygen chamber treatments every day for 30 consecutive days? The uncertainties of my/our health go on and on. Having your own business requires the ability to constantly feed the monstrous expenses with new clients so God forbid anyone finds out.

My book isn’t “about me” as much as it’s meant to help people remain optimistic in the worst of times - no matter what personal or professional challenges they’re dealing with. I also want to continue to raise awareness about the deadly little-known symptoms and consequences of diabetes.

More than 30 years ago I sat on the Board of the Chicago Chapter of JDRF which was JDF back then. When they moved from the offices I was accustomed to going to meetings in I moved my business to their location and as their until I retired.

I appreciate you letting me be part of this community, and I look forward to learning from you.

Have a great holiday everyone.

John Robert Wiltgen

1 Like
#17

Hey @T1Diabetic453years welcome to TypeOneNation. I’ve only had T1 for 41 years and I also am in design. Not residential though but more of an industrial kind of arena. Just want to say hi and welcome and let you know we have some serious experience here and we welcome you and your history with open minds and hearts, and I hope you find our forum and hospitality to your liking.

1 Like
#18

Hi John @T1Diabetic453years, like you, I find that the way to live with diabetes, or just live a good, pleasant, and productive life is to maintain a positive attitude and keep an “I can do” attitude, and always move forward… Also, like you, I have Retinopathy which was diagnosed in 1066 after I live several years ignoring the fact that I had diabetes; I found an ophthalmologist who had a dream of modifying a weapon grade Ruby LASER to fix eyes - I volunteered. Laid of from business during the depression of the 1970s when unemployment in Boston was 24% so I opened my own business, got a builder’s license and gave work to several men.

where I’m different from you, is that I do not think of my diabetes as “stigma” - it is just something with which I must live for the rest of my life. True, when I got the “good news” of diabetes on my 16th birthday and was told I might live as many as 10 years, I was upset but soon found that I could still live life very actively without restrictions - other than restricting certain food choices.

What I find as more a stigma than “your diabetic” is “you are a skinny-mini”. Compared with all my brothers, I’m the runt of the litter; I only grew to 5; 11" and never got over 160 pounds even when doctors put me on a weight-gain 4,000 calorie per day diet.

#19

Probably the biggest stigma thing I experienced was when I was diagnosed. I was a Marine stationed in Iwakuni, Japan with the 1st Marine Airwing Band. After diagnosis I was discharged because I got it. It was a bummer cuz I had gotten through boot camp, a 6 month music school and was finally in band where my full time job was playing in band. How cool is that?

I get my diabetes care at the VA because I am a disabled veteran. My doctor told me now they put people on a pump and let them finish their enlistment Wish they had that back then in 1977.

Anyway, that’s about all I have to report. I want to be treated like everyone else. So I tell people on a need to know basis. I’m not hiding it or ashamed, it’s just that people don’t understand and make ridiculous assumptions or tell me their Aunt had it and had to have her feet cut off.

But really, how are they to know? I know very little about epilepsy or Chrohn’s Disease or any other host of chronic conditions. I’m sure the little I know is suspect. So I don’t get down on people that just don’t know and say ridiculous things.

Well, one other thing. My son also had T1D. He wanted to join the boy scouts but the lady in charge said they had heard stories about him and diabetes so he could not join.

2 Likes