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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Many people experience diabetes-related stigma, ranging from one-off negative and misinformed comments to more pervasive experiences that can lead people to feel they need to hide their T1D. How much has stigma impacted you or your loved ones with T1D? Cancel reply
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It’s a problem if you let it. Unlike obesity, substance abuse, or illiteracy it’s something can’t be helped. But I missed my first day of work in 11 years (unscheduled day off with a bad stomach bug and no restroom nearby, otherwise I’d showed up) last weekend. Middle of a 14 day week.
I kind of challenge others to keep up. If something’s said I welcome the chance to teach but again the most common comment I hear is “You don’t look like a DIA…”
(My comment is how would I wrestle against Kevin O’Reilly? Type 1_pro wrestler. Or play backyard football against Jay Cutler, or get the nerve to get Halley Barry’s husband mad at me? All TYPE1 diabetics and my example of real success.)
I wouldn’t include Halle berry in that comment. There have been questions for years on her type 1 vs type 2 status. In 2018 she said she’s not on insulin. That her type 1 turned to type 2. More than likely she was misdiagnosed.
I am quite discreet about my T1D because over the years I have gotten tired of hearing unhelpful comments from others. My medical situation is my business and no one else’s. For those who are close to me or genuinely care, it’s a different matter entirely. I feel that my diabetes is not the most important or interesting thing about me, and so there are plenty of other things I would rather talk about. : )
I tend to be oblivious to stuff like that, so I said not at all. I do get a bit angry when people think there are ways to control T1D that don’t involve insulin. It’s because they don’t know the difference between T1 and T2. They are trying to be helpful, so I usually just let them talk and then explain.
Sadly the perception at least in my small town view people with diabetes as somehow faulty and not prime employees or even people. The negativr connotation is misplaced and misinformed. Fighting the consequences of a chronic illness makes us harder-working and more diligent than people who have the freedom to not have to worry about keeping everything running correctly.
I don’t advertise it, but if it comes up I’ll talk about it. Mostly at meals out, hosts want to know what to serve. I say anything except liver ( bleah, yuck, gag). Then just pick and choose. I don’t even mention my celiac issue, as that throws people into a tizzy. I just avoid anything with gluten. I must say, we haven’t had many dinner invitations in a couple of years! Pandemic? I hope so……. but maybe just us getting old.
I don’t think of my diabetes as stigmatizing. Generally, I get the word out to people around me, in case I might need assistance. However, there were times in the past where people made inappropriate comments. Back in 1976, I worked for a food company as a traveling salesman. When I told my boss of my Juvenile Diabetes diagnosis, he advised me to look for a new job. Once at work, an employee saw my insulin pump, and asked if I was recording our conversation. I’ve also, on rare occasions, had people tell me that I shouldn’t be eating a certain food. Generally speaking, I don’t feel stigmatized by my diabetes. It’s there, a part of my life. I don’t hear a lot of negative or misinformed comments.
I have never felt a need to hide my Type 1 Diabetes. When asked, I am glad to provide information. I try to stay away from off the cuff comments about others conditions like obesity, physical and mental handicaps, heart disease. I am not an expert on many conditions others may be experiencing.
Most of the problems happened in the past when people assumed that I was T2D and assumed that it was self inflicted. They would tell me about their grandparents and what they did to releave it, e.g. cinnamon, using honey or simply losing weight.
A yoga teacher once told me I would be cured if I ate more asparagus! : )
I don’t like to tell before being hired. They don’t like for me to have to stop and care for myself in a fast paced office.
I was fired from the Home Depot because, prior to my CGM, I kept going low and management kept smelling the breath odor they assumed, despite all the research I presented and the negative drug/alcohol tests they assumed I was a drunk on the job. So yeah – I have experienced the negative effects from the ignorant and uncaring general population.
I put “only a little” and, unfortunately, the misinformation has come from health providers, especially hospital personnel.
None of the above items. Why, because I look and feel better them most of the people I deal with. Even at the American Airpower Museum, Farmingdale, NY where I have been a Docent for quite some time. One thing that works for those to not tell your age is to have a shaved head. No gray hair!!! The most telling is not being very heavy or out of shape.
My mother thinks the doctors made a mistake, I can’t have diabetes, no one else in our family has it!! My brother thinks it’s all to do with weight…
That ‘rings a bell’ with me, Kandy Gonzalez. Up until the day that he died, my dad insisted that they’d made a mistake with my diagnosis, and swore that it was down to the vaccinations/innoculations that I received during my Army service.
With your brother thinking that “it’s all to do with weight”, this is due to the fact that most diagnoses of diabetes are for Type 2 diabetes, which does have weight as being ONE of the components that can ‘bring it on’, especially if the sufferer has a larger percentage of abdominal fat.
With all the Type 2 diabetics out there, being “diabetic” does not seem strange to most people. I do get tired of explaining my pump and CGM.
I haven’t hidden the fact I’m T1 and have attempted to use it as an education tool, for people I’m close to, for people that make flat out un-true statements, and to my poltical representatives. I think most people appreciate being informed/corrected on their “understanding” of diabetes, T1, T2, differences and needs. Those that don’t…well, perhaps they won’t make the same un-informed comments again and have a little more consideration.
Having had T1D for 62 years I listened to lots of coments that were not true about T1D. Since I’ve had it so long, when I hear comments now I take the opportunity to educate people about the chronic illness.
I selected “Only a little” as I KNOW, for a FACT, that I’ve managed to ‘talk myself out of specific jobs’ due to my insistance of ‘putting FACTS’ before people who THINK that they know better when, in fact, their understanding of diabetes is sadly lacking. (SOME people in positions of ‘power’ THINK they are always right, and my mouth is big enough to inform them that they are sadly misguided. 😉 )
No stigma here – I am a fierce warrior & defender of diabetes knowledge and awareness. People’s ignorance about diabetes used to irritate me, especially assumptions made without knowing the difference between T1 and T2, pre-diabetes, and other forms of blood glucose dysfunction.
One of the motivating reasons I became a nurse and eventually a CDE/CDCES is to educate people about diabetes in it’s many forms and facets. Starting with PWDs, and all the people who supposedly are concerned about their welfare – loved ones and family members, employers and HR people, the general public, and most of all health care providers who care for people with diabetes. It is unbelievable how ignorant many in health care professions are, including doctors and nurses, who do not keep up with diabetes research, latest care trends, appropriate use of medications, use of technology, and current best practice guidelines, initiatives and recommendations.
When false perception s become false idols, there is little dangerous when they enter that hall of mirrors.
What’s really dangerous is when they insist on us following along with them.🤕
“Only a little” because I for the most part don’t tell everyone that I’m T1D. When I was diagnosed 32 years ago I was working for a Medical Group and had on several occasions nurses or other staff tell me “oh I heard you’re diabetic you shouldn’t eat that” as I reached for a donut or cookie at a meeting. It was at that point that I decided I would only tell those I was close too and would never wear it on my sleeve. I have since matured and am confident in my management of my T1D and really don’t care what people think or their ill informed comments.
#BeYouAndBeWell
Those type of people I call the diabetic police. I am a RN who works in a hospital. I had a doctor tell me that the hummus that I was eating for breakfast had carbs in it (like I didn’t realize that). I responded “it’s a lot healthier than the pizza that you’re eating”.
At one of my earlier jobs many years ago, they made me walk to Human Resources to check my BG. The job was on a beautiful campus and, as I was a lot younger, I hiked very well. So, I said, OKAY, BG testing time, I’ll be back in a bit. (It was a 20 minute walk each way). I never hide the fact that I am T1D. None of us asked for this disease. I had one hair stylist that wouldn’t let me check my BG in his shop. No problem; it took me 2 seconds to find another hair place.
Had lots of problems while a grade school student (dx. in 3rd grade) in the late 50’s because there was so little known. I was kept apart from other students whenever food was involved. Any school extracurricular activities required my mother to accompany me or I couldn’t attend. I wasn’t permitted to participate in any physical education classes or recess activities. Once I got to middle school I stopped telling anyone.
Wow, thankfully times have changed since then.
I have received many “helpful” uneducated comments from others that know little between the difference between the difference of type 1 and 2 diabetes or their causes. It doesn’t bother me. I explain to them the difference as I know I am uneducated in infinite medical problems.
I am grateful for the knowledge science has of endocrinology compared to epilepsy. The stigma is far worse.
I answered ‘somewhat’. 15 years ago, I would have answered “Not at All”. But in the past 15 years, I’ve had one co-worker who refused to walk to meetings with me or go anywhere alone with me because “I don’t want to have to save your life if you collapse”. Other reactions were ‘misinformation’,…… eat (whatever the latest fad is) and you will be cured. Other reactions over the past years were ‘look she must be on drugs’, but they were few and far between. Overall, I’ve had very little negative reactions until the past 15 years.
I really get no offensive comments. I do however get misinformed ones. I usually just explain some of their misinformation and they are usually quite surprised or glad I gave them some information that they didn’t know before.
I have had T1D for almost 67 years. When I was hired in 1968 at John Sealy Hospital in Galveston, Texas they would not give me Workers Compensation insurance due to have T1D. Someone asked me once if they could catch T1D.
I am so proud of my diabetes. It’s taken me a while to get here, but I am grateful for it. It has offered me a great life perspective. I am thankful for a shift in thinking – I have come to fully embrace and own my diabetes, rather than becoming victim to it.
Recently I find that most Americans are familiar with type 2 diabetes and don’t know there is a difference. I have received many comments suggesting i excercise more or asking me if I would change my lifestyle so that I don’t need medication. Very frustrating.