Hey there! 23F here, diagnosed about two years ago. Since my diagnosis, I’ve moved to a new city and started a new job. I don’t know how to talk about having T1D with others. I’m still using pens for insulin injections and I feel compelled to hide it because I don’t know how to field questions and I don’t want to draw attention to myself. It’s draining keeping such an important aspect of my life a “secret” but I don’t know how to address it without making things weird. I also struggle with the stigma that comes with diabetes. Even though I have type one, I feel embarrassed to say I have diabetes because there is so much shame and blame around Type 2 and behavior focused therapies. I guess I just want to know that I’m not alone in this and I’d appreciate any advice you all have!
Hi @claireeb and welcome to the forum. I was diagnosed in 1963. I think my parents made a big deal of making sure people knew, in case something happened. When I got old enough to decide for myself if I wanted to share, I never felt compelled to tell someone - or to keep it secret. So there are people I’ve known a short time that I’ve told - and people who’ve known me for years who don’t know. It’s not that I’m keeping it secret - it just hasn’t come up.
One reason for discussion is that they saw my pump and asked about it. Some people hate that - I don’t mind. It’s a conversation starter - which can be hard for me - and a chance to provide a little information. When I took injections I tried to be discrete - not for secrecy’s sake but because some people are scared of needles. For that reason I would encourage you to be discrete but not secretive. I had someone walk in on me once as I was injecting at my desk - to say they were surprised was an understatement, and I did explain so they wouldn’t think I was doing drugs in the workplace😊.
If you want to say something to others, if it’s time to inject for a meal you could say “Excuse me - I’m going to go take my insulin. I’ll be right back.” When I was dating I would do that. That starting conversation could be awkward so it gave us something to talk about when I got back, and it was no big deal. When you’re making plans to go out to eat you could ask what time you’re planning to dine so you’ll know what time to take your insulin. It can fit somewhat naturally into conversation.
By now your new coworkers may have seen you living life pretty much as they do, and the picture of health. That will show them that having diabetes - Type1 or Type2 - does not have to be the end of the world - and that people can and do live good, healthy lives by taking care of themselves.
It’s unfortunate there is shame around Type2: not everyone has it because of poor habits - sometimes the body stops functioning for no apparent reason - and even if it were due to poor habits none of us is perfect and we are not supposed to judge. People will think what they want, but by sharing your example you can help chip away at the preconceived notions and judgments.
I’m a junior in high school so I’m in a different situation but maybe the following bit will help
I usually don’t tell people I have T1D when I first meet them, I wait for them to notice and ask me a question. Like Dorie said, I’m not secretive about diabetes- I don’t hide it, but I don’t really advertise it either.
If they have to know- like a teacher or something, I’ll tell them, but otherwise I wait for them to ask me. Usually it’s nice to have someone who knows, a “safe” person, in case if I’m high or low, because then I don’t have to explain anything or try to think of a reasonable explanation/excuse.
I’ve found that most people are so preoccupied with themselves that they don’t actually notice that I’m any different. And they don’t really care. For example I sat next to the same kid for 3 months last year and he had no idea that I had diabetes (even though I had multiple lows/highs/CGM beeps/etc) until one day when he noticed my CGM on my arm. “Is that a giant bandaid?”
When people notice, there’s almost always the inevitable reactions: “wait were you born with it?” “Did you eat too much sugar” and occasionally “I wondered! My dad has diabetes too and his pump looks just like that!”
Have a very simple explanation prepared like “I have an autoimmune disorder called type 1 diabetes and my pancreas isn’t able to produce insulin anymore. Insulin lets your body process the sugar in the food you eat. So when I eat I have to take an insulin shot so that I don’t get sick.” and be ready to answer some questions like “how did you know you had it” “why do you….” And the difference between highs and lows and type1/2 (people like me with type 1 don’t make insulin, while people with type 2 do make insulin but their bodies can’t use it properly)
People usually just don’t know. They’re curious and they only judge because of false information. If they’re judgy…. Other threads on this forum have a wealth of sarcastic comments or other responses you can give. How are they supposed to know anything about diabetes if we don’t tell them?
@claireeb Welcome Claire to the JDRF Ty[eOneNation Community Forum!
Like you, I kept our shared “secret” for years, didn’t tell anyone in high school, college or my first job. It wasn’t until my second job that I dud tell a few trusted coworkers with whom I often traveled and lived for weeks at remote job-sites.
I suggest that you may begin sharing your secret first among people with whom you feel comfortable and importantly when YOU feel non-threatened and then share just as much as YOU want to share - start small. First know your diabetes and be prepared for hearing many myths like “you shouldn’t eat that …”, etc. Try not to be defensive but rather offer a bit of education without sounding like a lecturer; believe me, it becomes easier for you with time. U began by telling one person, then a few more and then let the circle grow. Follow along on this Forum and learn what you can about diabetes, ask questions. The “diabetes stigma” is something that has grown out of ignorance and some of those Type 2 have nothing to do with life choices, much like our autoimmune diabetes; Type 2 is an umbrella phrase encompassing the 8 or so forms of diabetes in Classification II, classification III and Classification IV - our TypeOne sits alone in Class I.
MDI with pens, especially if you can afford a CGM is a very effective way to manage your diabetes. I used pens for 25+ years beginning in the 1970s when I contributed to the team developing MDI. The pen made my life taking insulin very convenient whether I ate lunch at my desk or any meal any where at a lunch or dinner table - just open a shirt button and jab into my belly; I made a bit of a “show” of it when I sat on the BOD where lunch was occasionally during the meeting - take out my BGM, get a reading, dial up a dose and shoot-up.
Hi Claire, Congratulations on taking the plunge by moving to a new city! Not everyone is brave enough to do that, so be proud. I used to not share at the office, because I was concerned about being discriminated against -but realized that hiding T1D was putting me in danger. This was before CGMs, so unexpected hypos did happen- although thankfully I never lost consciousness. I then began bringing it up with coworkers as soon as we started to get friendly (chatting in the kitchen, etc.) by working it into a conversation (I wish I could eat that donut, but I’m a Type 1 diabetic so have to be careful about eating too many carbs".) Most people were genuinely interested enough to ask questions and I was always very open in answering them. The few people who asked no questions or gave me an odd look (this was VERY rare) were people I decided weren’t worth bothering with. A couple of times a person would respond with “You’re too thin to be diabetic”- and I’d explain a little about Type 1 vs Type 2 and that I became diabetic as a skinny 8-year-old kid. I never felt embarrassed about it. I hope this helps, because you are putting yourself somewhat in danger by not sharing this info. Hopefully you wear a medic alert or similar jewelry, just in case?
Check if there’s a JDRF office in your new city- that might be a good way to connect with other T1Ds who live nearby. You can also try posting on this forum with the name of your city- you may find new friends on here!
Please stay in touch and let us know how things go when you start sharing. It is a good way to learn quickly which people are uncaring or judgmental- so you can avoid them.
38M diagnosed 25 years ago, I’ve always used multiple daily injections. I hate telling people, I hide it, and I always have. Sometimes, though, others must know. Like, if I’m having a low blood sugar and need help, or I need insulin and must “take my medicine.” I have never come across someone that was not understanding.
36F here… diagnosed abt 6 months ago… You’re definitely not alone…
I’ve lost about 50 lbs in the process of getting T1D so its obvious something is wrong to anyone who has seen me before… so i’m going with avoiding seeing them as long as i can and when its inevitable i have a long conversation in private…
Strangers are not that much of a problem tho - they either assume i’m just a naturally super fit person or if they find out (by seeing my sensor), whether i tell them its t1 or not, they assume it is t1 and that i’ve been handling it great since i was a kid…
I was a teenager when diagnosed with type 1 and used to keep it to myself. However, it’s a good idea people next to you and supervisors know you have Type I diabetes, an IMMUNE disease! and that’s the way you explain it, it has nothing to do with lifestyle or diet.
This has been difficult for me as well, and its been almost 30 years now! I’ve had people make comments, ask insensitive questions etc. I am very private, and I still try not to draw attention to my medical condition at work, but I no longer hide it. I realized that was only placing an additional burden on MYSELF. When I do disclose, I always say I have Type I diabetes, not just “diabetes.” I am usually saying something only to explain why I have to wear a pump or eat something or take a break to recover from a low. If you just say “diabetes,” you are not really providing the most meaningful information. The diseases are very different and you should not feel bad about wanting to make clear what condition you are dealing with, when you do decide to share at all. Also, I loved using insulin pens because I felt they WERE so discreet. But there has been no question a pump, especially with CGM (I use Tandem pump w Eexcom G7) has been much better for my overall blood sugar control, and with reducing the number of serious lows. I strongly recommend you move in this direction, even if it is a bit more difficult to “hide.” Good luck.