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    • 4 hours, 37 minutes ago
      Lawrence S. likes your comment at
      If a study required temporary changes to your usual diabetes routine, how willing would you be to participate?
      I participated in a 6 month study where I had to switch cgm (Dexcom g6 to g7) and go from omnipod 5 back to mdi (using tresiba, I had used lantus when I was mdi previously). I found it very enlightening. I had heard terrible things about the g7 and found I loved it. For me it is very accurate, love the 12 hour grace period (use it to presoak the next one). I was happy to switch to the g7 after the study. I also found I wasn’t so crazy about tresiba. The best part was I feel like I have a better understanding of my basal and bolus settings and I now feel very comfortable switching between the pump and mdi when I want to take a break😊
    • 10 hours, 41 minutes ago
      atr likes your comment at
      If a study required temporary changes to your usual diabetes routine, how willing would you be to participate?
      I participated in a 6 month study where I had to switch cgm (Dexcom g6 to g7) and go from omnipod 5 back to mdi (using tresiba, I had used lantus when I was mdi previously). I found it very enlightening. I had heard terrible things about the g7 and found I loved it. For me it is very accurate, love the 12 hour grace period (use it to presoak the next one). I was happy to switch to the g7 after the study. I also found I wasn’t so crazy about tresiba. The best part was I feel like I have a better understanding of my basal and bolus settings and I now feel very comfortable switching between the pump and mdi when I want to take a break😊
    • 11 hours ago
      Gerald Oefelein likes your comment at
      If a study required temporary changes to your usual diabetes routine, how willing would you be to participate?
      I participated in a 6 month study where I had to switch cgm (Dexcom g6 to g7) and go from omnipod 5 back to mdi (using tresiba, I had used lantus when I was mdi previously). I found it very enlightening. I had heard terrible things about the g7 and found I loved it. For me it is very accurate, love the 12 hour grace period (use it to presoak the next one). I was happy to switch to the g7 after the study. I also found I wasn’t so crazy about tresiba. The best part was I feel like I have a better understanding of my basal and bolus settings and I now feel very comfortable switching between the pump and mdi when I want to take a break😊
    • 11 hours, 4 minutes ago
      Sarah Berry likes your comment at
      If a study required temporary changes to your usual diabetes routine, how willing would you be to participate?
      I participated in a 6 month study where I had to switch cgm (Dexcom g6 to g7) and go from omnipod 5 back to mdi (using tresiba, I had used lantus when I was mdi previously). I found it very enlightening. I had heard terrible things about the g7 and found I loved it. For me it is very accurate, love the 12 hour grace period (use it to presoak the next one). I was happy to switch to the g7 after the study. I also found I wasn’t so crazy about tresiba. The best part was I feel like I have a better understanding of my basal and bolus settings and I now feel very comfortable switching between the pump and mdi when I want to take a break😊
    • 20 hours, 7 minutes ago
      AmyM likes your comment at
      How confident do you feel understanding informed consent documents for research studies?
      I am unclear. Maybe you can explain what I am missing. The clinical studies I have done do not involve sharing data with social media. They are medical and are HIPAA protected.
    • 1 day, 8 hours ago
      Laurie B likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      I guess it more an insurance restriction than a cost problem. But I don't want to be charged full price for a new pump.
    • 1 day, 8 hours ago
      ChrisW likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      MDI and since FIASP is now covered under Medicare I wanted to try the inPen. They wanted over $600 for it so I said no thanks!
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      Wish cost did not have to come into play but unfortunately it does.
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      It isn’t that I can’t afford devices or meds, it’s more that I feel pharma is jacking up prices to see what the market will bare without conscience. Free enterprise does not work in most of the life sustaining medical community, particularly in the US.
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      I guess it more an insurance restriction than a cost problem. But I don't want to be charged full price for a new pump.
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      Having to wait for the warrantee period to run out before switching pump manufacturers is the biggest restraint. I had to wait to switch from Minimed 770 to T:slim X2 several months. I am now considering going back to Minimed because of the improvements in their sensor and the problems Tandem is having with infusion set manufacturing. So I have to wait a year.
    • 1 day, 10 hours ago
      Steve Rumble likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      Insurance influences my decision to try a new device more than cost.
    • 1 day, 10 hours ago
      Kathy Hanavan likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      Insurance influences my decision to try a new device more than cost.
    • 1 day, 10 hours ago
      Marty likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      Insurance influences my decision to try a new device more than cost.
    • 1 day, 11 hours ago
      TEH likes your comment at
      How often does cost influence your decision to try a new device or therapy?
      Insurance influences my decision to try a new device more than cost.
    • 2 days, 4 hours ago
      ChrisW likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I turned down a CGM study because the sponsors, a manufacturer, claimed the data would belong to them exclusively. While I may grant use of the data, its mine thank you!
    • 2 days, 9 hours ago
      Natalie Daley likes your comment at
      How confident do you feel understanding informed consent documents for research studies?
      My fear and concern with those who answer "very confident" and are non-lawyers is that you may be unaware of what Facebook, Google, Amazon, Nvidia, Apple, Microsoft, et al do with your data. As the old saying goes about the capitalist, "Here. Take it. How much money will you give me for this rope you are going to hang me by?"
    • 3 days, 9 hours ago
      Anita Stokar likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 3 days, 20 hours ago
      kilupx likes your comment at
      How often do you experience device fatigue (feeling tired of wearing or managing devices)?
      My only fatigue is figuring out where to put my next pump site since pumping 28 years now
    • 3 days, 20 hours ago
      kilupx likes your comment at
      How often do you experience device fatigue (feeling tired of wearing or managing devices)?
      I get itchy rashes from the tandem canula adhesive, so that makes it more of a burden. I dislike having to report to dexcom when their devices fail. and i do feel tired of wearing a device when i see the double down or double up arrow.. they cause a lot of panic and over compensation (on my part). I'd say.. I'm weary, and honestly feel a little judged, every time I hear a beep or see a high or low number. but that's not the device's fault. I'm happy to use the devices though, they keep me closer to ok! especially during sleep.
    • 4 days, 4 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Actively thinking about things is only during pump,CGM changes, meals, activities. Which is not many hours in a day. However, it is always running in the back of mind.
    • 4 days, 4 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Probably just 1 hr most days. But better questions are: (1) how many times per day & (2) how taxing/draining is it?
    • 4 days, 4 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      I'm not sure this is something that can be quantified in hours per week? 5 minutes here, 10 minutes there multiple times throughout every day, it adds up. But I don't keep track...it's just life
    • 4 days, 4 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      For the last 52 years living with T1, my diabetes care is always on the forefront of everything I do.
    • 4 days, 8 hours ago
      Gerald Oefelein likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I’m either too old or live too far away. I’m 72 and live in Arizona
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    Have you ever felt personally stigmatized or targeted in a negative way because of your T1D?

    Home > LC Polls > Have you ever felt personally stigmatized or targeted in a negative way because of your T1D?
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    Samantha Walsh

    Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.

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    29 Comments

    1. Trina Blake

      Two work incidents. The first, I was never included in after work celebrations or happy hours. I couldn’t help but hear my colleagues as they made arrangements. FInally, one day I asked a colleague/friend if I had offended anyone etc. She said no. I then asked why I was excluded from office socializing. She said people had talked about it, but thought I shouldn’t go where I might be tempted to “mis-behave”. I told her I had been living – thriving actually – with T1D for decades. I knew what to do and what not to do. I also menatined that what was important wasn’t the cocktails or the food – it was the sense of comaraderie and friendship that was of value. I said I’d be happy with a refillable cup of coffee. The next time I was invited.

      The second was overhearing a middle mgt dept head discussing me with an upper mgt person. The dept head said she didn’t understand why I was even hired, much less the promkotions I had earned. When asked why, the dept head said that I was irresponsible. When asked how she arrived at that conclusion, the dept head said that, after all, I had diabetes, explaining that “everybody knows that diabetes is self-inflicted”. If I couldn’t/wouldn’t take care of my health, how could I be trusted to manage multi-million $ portfolios. I wish I could have stuck around to hear the end of that conversation. The upper level mgr was married to a person with T1D. I certainly hope that something was said. It did explain why I wasn’t offered many career development training opportunities.

      5
      2 years ago Log in to Reply
      1. Mick Martin

        @Trina Blake. Personally, ma’am, I find it shameful that people in positions of ‘authority’ don’t seem to have the intelligence to find out more about diabetes, especially when they’re employing someone that is. The fact that the Management person was also married to a Type 1 diabetic makes it even more dumbfounding. I also find it shameful that diabetes-related organisations [organizations] don’t do more to educate people about the differences between Type 1 and Type 2 diabetes. (Wait for the requests to fund this initiative. 😉 )

        1
        2 years ago Log in to Reply
      2. Becky Lamont

        I’m so sorry that you were subjected to that! Isn’t it amazing how lack of understanding and information are promoted in our world, especially in positions of authority over others.

        2 years ago Log in to Reply
    2. Aaron ardonthorn5

      We often get donuts or other edible items at work. I get the “Oh, you can’t have that,” from coworkers or management. I tell them that’s what insulin is for and eat it.

      6
      2 years ago Log in to Reply
      1. Mick Martin

        @Aaron ardonthorn5. That’s sad, sir. I used to get the same sort of words from people that I worked alongside, though an explanation of how insulin works tended to dissuade them from forwarding incorrect statements … at least, to my face. Unfortunately, I also get the same words thrust at me by my wife, and we’ve only been living together with my suffering with type 1 for the last 40+ years.

        2 years ago Log in to Reply
    3. Tina Roberts

      Yes. When on the job.

      2 years ago Log in to Reply
    4. Twinniepoo74

      My husband does this alot but he also does it with my other health problems. He treats me like a disease cause he’s type 2 and no matter how much my endocrinologist tells him I’m not contagious I’m treated as I need to be in a bubble cause I am.

      2
      2 years ago Log in to Reply
      1. Mick Martin

        @Twinniepoo74. I’m so sorry to ‘hear’ what you’re saying about your partner/husband, ma’am. It’s exactly the same with my wife, and to a lesser extent, my youngest brother, who also happens to be type 2. You would expect that, before our near and dear ones comment, they’d at least take the time to find out with whether they’re saying that they’d find out the FACTS! <3

        3
        2 years ago Log in to Reply
    5. KIMBERELY SMITH

      People tell me that oh they are Dietetic and don’t see wearable on their arms

      2 years ago Log in to Reply
    6. lis be

      I have always felt I have to work twice as hard just to get equal respect from my employers because (this is a direct quote from my boss) “You understand, having a type 1 on the books raises everyone else’s premiums”.
      also, have been denied life insurance twice, so I was told I could work while the others went to the explanation of benefits meetings.
      Had a new boss come in at one point and announce to my staff, in his experience, type 1s can be volatile (no basis, that one had to go up to HR).
      As an extremely hard worker that didn’t want any attention my way (out of fear of losing my insurance), I often ended up neglecting my health so that I would fit in, and no one would notice my type 1.

      5
      2 years ago Log in to Reply
      1. Mick Martin

        @ lis be. I’m truly glad that your forwarded that offensive, and critical statement about “type 1s can be volatile” with absolutely no basis for his idiotic statement. What was the outcome of your report to HR, if you don’t mind me asking? Hopefully, he was sent for further training on what he’s allowed to say to employees. Sadly, we can’t, at this moment in time, control his cognitive abilities (thought processing abilities). <3

        2
        2 years ago Log in to Reply
    7. eherban1

      But only when I was a child/teen.

      2 years ago Log in to Reply
    8. Annie Wall

      Wow, have I been blessed. Somehow I always worked in organizations where all staff to the highest in management have totally understood diabetes. Reading the examples in several comments is horrifying. I was always able to be straight forward both with my employer and my staff. Once fellow workers discovered what I was like when my blood sugar dropped, they’d almost automatically bring me a cup of OJ. I was damn lucky to work in such wonderful places.

      3
      2 years ago Log in to Reply
    9. Lawrence S.

      Yes. In different ways. Back in the early days, before insulin pumps, CGM’s and blood test kits, control of T1D was a challenge, to put it lightly. Tight control meant numerous very low blood glucose daily. Of course, those at work, including supervisors saw this as a severe deficiency. I’m certain that I did not get promotions or consideration for positions for which I was highly qualified. With the development of blood test kits in the mid 1980’s I was able to get some positions. But when the insulin pump came along ( I got mine in 1998), I had a major promotion at work within a year after getting my pump.
      Then there were those who accused me of wearing a tape recorder on my belt at work (it was my insulin pump).
      I’m sure there were other circumstance, of which I was never made aware, as well.

      1
      2 years ago Log in to Reply
    10. Mick Martin

      I have felt stimatised [stigmatized] AND targeted in a negative way because of my T1D, and especially so by a former employer … or rather, uninformed people within the organisation [organization], namely Social Services Department. I’ve been ‘turned down’ for positions and further training based on pure ignorance. Unfortunately, I’ve ‘got a bit of a mouth on me’, and I retaliate, stating that the people interviewing me have been lacking in intelligence, based on their ill-informed judgements [judgments] about diabetes in general, and type 1 diabetes specifically. Of course, this didn’t exactly inspire the ‘offenders’ with any sense of guilt, but once I started writing directly to the Director of Social Services, in the area that I live, it ‘opened the door’, even though the Director was one of the people that I’d openly stated was ignorant of the FACTS. When trying to get the Department to finance my Social Work training, there were all sorts of obstacles and misapprehensions put to me, such as how much studying was involved; that I’d need to work alongside doing the training; that many people ‘drop out’ of the training because of the adverse effects it had on SOME people; that I didn’t need the training as I ‘already knew all there was to be a valuable member of staff’. (I was basically doing the same at work as I was at home with my two very young sons, such as wiping noses and wiping bums, but I knew there had to be more to the job than doing just that.) I believe that I proved that when they decided that I could do the training it was the right decision as I was, at that time, the best Social Worker that the Department had ever seen. 😉

      4
      2 years ago Log in to Reply
    11. Amanda Barras

      I selected No.
      However, if this would be considered a negative experience based on ignorance then yes. There was one time I was having a low bs episode and the person I had an encounter with at work didn’t know I was diabetic and very rude yelling at me and my manager because I was just standing there not doing anything in this woman’s eyes. It never crossed her mind I might need help. That was horrible. On the other hand I had a similar experience with a regular customer who knew my normal demeanor and she noticed me in a similar state one day and got me help immediately.

      3
      2 years ago Log in to Reply
      1. Lawrence S.

        I had a similar experience, around 1982, when I fell asleep at my desk. I remember people looking into my office. No one came in to see if I was okay. Eventually, I came awake enough to drink some juice. Later, I heard comments about laziness and sleeping at work. I had to explain that I was having a low blood sugar and needed help.

        2
        2 years ago Log in to Reply
    12. mlettinga

      I did when I was younger and people said I could t play sports or go to camp or couldn’t travel but my
      Parents would push for it and make it happen. I had once in school when I had a bad low and one of teachers didn’t want to drive me to hospital(in 70’s) cause he heard I’d throw up. Parents didn’t want me to overnight. But that changed when I could advocate for myself. I still have people tell me what I can’t eat. Drives me crazy but I then educate them. I’ve had a podiatrist who assumed I was type 2 and just assumed I
      Couldn’t feel my feet

      3
      2 years ago Log in to Reply
    13. Janis Senungetuk

      Both in my childhood and as an adult I have had too many occasions when my T!D was used as the reason to exclude me from being included in both social gathering and professional advancement training. Ignorance is never an acceptable excuse, especially when the offender is in a position of authority.

      4
      2 years ago Log in to Reply
    14. Bob Durstenfeld

      I was denied work opportunities because of it by one particular boss who had total misconceptions about T1D

      2
      2 years ago Log in to Reply
    15. ChrisW

      I took a moment to reflect on times when this happened and the memories that still hurt a bit are mostly times in healthcare settings.

      3
      2 years ago Log in to Reply
    16. Steven Gill

      Diagnosed TYPE 1 as an adult I have advantages so many didn’t: competent at my job, confident in myself, and…I’ve already seen the worse (son of the town drunk, poorly educated…). Honestly some have tried and besides daring them to keep up (beating up a house, carrying furniture…), but sometimes there can be honest concern. Last month at the shelter was asked if I should walk a specific dog (high energy, concerned my pump tubing). Shrugged it off, always carry a spare and said I lose a few a month. Did hide it in my shirt because I do get scratched in wrestling matches.

      But…I wonder how many school kids I know were impacted not just by diabetes. Some of us were more worried about ourselves.

      3
      2 years ago Log in to Reply
    17. Teri Morris

      Years ago, on holiday in Ireland with my family, my (criti-)sisters affronted me with blame for not handling anything in my life correctly. (health, relationship etc.,) It ruined my trip, and I made the decision to no longer just tolerate their abuse. I hitch-hiked to the airport and came home early. My husband greeted me at the airport, and I have never regretted my decision to no longer put up with criticism where my diabetes is concerned.

      2
      2 years ago Log in to Reply
    18. T1D4LongTime

      A co-worker refused to walk to meeting with me. She had a sister with diabetes. She made the comment “I won’t walk with you anywhere because I don’t want to have to save you”. All the rest of the people in the world I’ve encountered have not been negative.

      2 years ago Log in to Reply
    19. Jeanne McMillan-Olson

      After graduating from a 4 year university in 1968, I was offered a job at a hospital in Galveston, Texas. They would not let me have workers compensation insurance because of my T1D. No problems like that since then, thank goodness.

      2 years ago Log in to Reply
    20. Anthony L.

      “I got you some fruit for dessert, because I know you’re a diabetic” – means well, but still can hurt.

      1
      2 years ago Log in to Reply
    21. KarenM6

      Well, yes. 100%.
      I was called a “fat, lazy cow” by a close family member. She didn’t consider anything that was happening might be due to T1D. (My doctor at the time doubled my insulin simply because I was soon to be an official teenager. No meters at the time, but I imagine I was constantly LOW and also having to eat too much to keep up with too much insulin.)
      Recently, my hard-fought for A1c of 6.5 was called “undesirable.” (I do realize that there are many of you who would consider this too high. I get it! I am impressed and thrilled that you can consistently have your BSes in a “normal” range!! It’s just that I had to work really hard for it so I am happy with my 6.5.) I wrote a letter explaining in no uncertain terms how and why they were wrong and that my A1c should be celebrated instead of receiving negative and judgmental language.
      I also explained that using such language could easily set a diabetic back on their T1D journey. (It won’t with me today because I know they are wrong now. When I was younger, it would absolutely have hurt my journey!)
      Then there’s the eye doctor who told me I wasn’t doing enough. I’d never met him before and he had no idea what I was doing. Gadzooks! He didn’t last in my roster of doctors.
      There are SO many examples of being stigmatized… what I eat or drink, what I do or don’t do, decisions, health outcomes I can’t “control.” It’s mind-boggling!

      2
      2 years ago Log in to Reply
    22. Becky Lamont

      Yes. My narcissistic, highly-functioning alcoholic father & sister have done it since I was diagnosed in 11/1966. My father made me interview with an insurance agent to participate in buying a life insurance policy at age 17 because he “was not going to pay to bury her!”

      My sister declared to the gathered Thanksgiving Dinner crowd of about 30 people: “Becky is a diabetic. There is sugar in everything but the turkey! Becky, you can eat what you can.” She even put sugar in the turkey stuffing! My Mom & I made pies & dishes I could eat every holiday meal after that! We told the sugar-eaters those delicious dishes were off limits!

      In 8/2012, my sister & brother-in-law declared that they did not believe I was a diabetic! I was just “faking it to gain attention!” I had been a diabetic for almost 46 years!

      Although I had lots of stigmatization from outside the family, the family nastiness was the hardest to deal with. God gave me great doctors, friends, and other relatives. I have to laugh at the foolishness of these people!

      I could not get medical insurance or life insurance, etc., my diabetic supplies including insulin were not covered by my medical insurance as a state employee for years and years.

      Thank God things are better, but Congress is working to make diabetes and the complications therefrom as inconsequential. I am still working as an attorney at age 74, I have no complications, but I am battling to get my CGM covered with Byram Healthcare who bills me for a years worth of CGMS ($14,840) because they will not bill my Medicare Advantage Plan with Kaiser Permanente as they have been directed to do for 2 years.

      2 years ago Log in to Reply
    23. Jeff Balbirnie

      100% certain. I was targeted…

      2 years ago Log in to Reply

    Have you ever felt personally stigmatized or targeted in a negative way because of your T1D? Cancel reply

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