Do you hide your diabetes?
For many years after my diagnosis in 1945, I did not know another diabetic. I mentioned my disease to a couple of friends when I was a teen, but they looked so puzzled. They did not know what I was talking about, and I doubted they even believed me. So I hid my diabetes for many years, but I did try telling a few teachers in high school and college. They did not seem to understand, and maybe they did not believe me. When I was a college sophomore I had a very bad hypo while taking my first calculus test. When I approached the teacher and explained that my vision was blurred, and I could not read the test paper, he would not help me in any way. That was the only test I ever failed. There seemed to be almost no knowledge about diabetes in my early years.
I dated and told my girlfriends. It did not seem to make a difference to them that I was a diabetic. That was probably because they did not know enough about it to be concerned. The first person I knew who really was concerned was my wife, but only after we were married. She was not concerned before we were married because she never saw me have a hypo. I was high much of the time on animal insulin. I did not tell my students after starting my teaching in 1962. There did not seem to be any reason for doing so. I was alone as a diabetic, except for my family, until I was married. My wife and I have been married for 48 years, and she has been so wonderful in so many ways with helping me with my diabetes. But there was still something missing!
In July, 2006, I found diabetes on the internet. That essentially changed my life, in a very important way. There were so many people online who were diabetics, or they had family members with diabetes. We talked with each other, and we learned so many new things. I believe that at least 80% of what I know about diabetes was learned on the internet. I was helped in so many ways, and my control and my life improved. I became a diabetes advocate to many online people who needed to know the things I had learned. So many parents of diabetic children have found me to be an inspiration because I was diagnosed when I was 6, and am very healthy now that I am 72.
After 66 years as a type 1 diabetic, I am very comfortable telling people about my diabetes, and about diabetes in general. It is very comforting and rewarding to give and receive help online. I will never again hide my diabetes. I hope my online friends feel the same way!
Wow, every time I read one of your posts, Richard, I'm so struck by the evolutions you've gone through with your diabetes. People who are willing and able to change even when it's hard always impress me.
For me, diagnosed in 2007 at age 58 I've been very open about my diabetes. What I've had to learn is to not talk about it too much. Even though Type 1 is not a disease of aging, I'm still conscious of how some people in my age range (63) talk way too much about medical problems. I also have always had a tendency to think the world revolves around me...lol...and as I've gotten older I've learned to repress that self-absorbed side. But to a great extent our worlds in effect do revolve around Type 1 it affects much of what we do. So I struggle to not share more than people are interested in or willing to understand. An example will be this weekend. I am traveling cross-country for a short 4 days to attend the wedding of a friend of 46 years who I haven't seen in 30! He is the only person I'll know there, so I'll be surrounded by strangers and somewhat dependent on them to provide for me, or at least my food! Yes, I'll test and bolus from my meter-remote at meals and I know some aspects of the trip will be stressful because of being out of my element and having little control. So just like I plan on not letting the humidity I'm unaccustomed to get to me too much, I'm going to have to do a lot of "letting go" of perfect D control. And when I do that my tendency is to talk about it, but even my old friend who would be interested has many other . things on his mind. So unless something comes up I'll mainly not talk much about my D.
So, all that to say my tendency is to err on the side not of hiding my D, but of sharing too much and have to learn to pick and choose when and how much I share. Now should I meet another diabetic, even if they are the more likely Type 2, all bets are off! Which is why I also love this forum, and loved and miss my Type 1 women's group.
No, I've never hidden my diabetes. When I was diagnosed in 1961 & came out of hospital after about a month & went back to school, I think all my classmates knew why I had been absent so long. Later at university I told people if it came up as to why I was giving injections. Later working, my employers all knew & my workmates. This was in the UK so I didn't worry about loosing a job because of health coverage.
I still tell people if it comes up, & I think all my acquaintances know, & it's no big deal.
Thanks for a good post, Zoe. Did there used to be a women's T1 group here? If so, what happened to it? Maybe you can start one here.
No it was a live group, Richard, in the SF Bay Area. It's still very much alive and well; I just moved up north to the mountains. I never actually thought about a cyber group, though I guess that would be possible if the chat function were opened up.
Hi Annabella, I am glad you feel that way. There are still many diabetics who hide their diabetes. By talking with others about our diabetes we can help educate the ignorance around us, and dispel some of the myths.
I don't necessarily hide it, but I do find that, at work, I try not to disclose it. I get concerned that it could result in my colleagues seeing me as "sick" or "weak" in some way. I also used to be very concerned that it could result in discrimination (i.e., not being offered a new job because the employer would be worried about having to pay higher health insurance premiums or having something happen to me). And then there are just all the negative perceptions/misunderstandings that come with telling someone you have "diabetes." Even when I explain that I have type 1, which is an autoimmune condition, I am still frequently greeted with a "But you're not overweight" comment. Ugh.
That all said, I've come to care less in recent years and have slowly been more forthcoming.
You mentioned teaching, Richard. I'm going to be teaching a live course in the Fall, my first since diagnosis. (Since then I've taught only online). I do plan on briefly mentioning my Type 1 to the class so if I experience a low and have to much glucose tabs they won't think the Instructor is breaking the rules about food in the classroom. It will also explain if I start drifting off on tangents...wait, no, I do that normally..lol
Nope, I've always been very open. When I was a wild rock and roller, I'd whip syringes out in bars to keep the party rolling. These days, I have my pump on my belt loop(including the Amphipod belt I wear running...) and I fly my tattoo pretty openly too. It's not "obviously" diabetes but I'm not shy about talking about it?
I have been diabetic for half of my life. I don't hide the fact that I am diabetic; my pump is always at mi side and I seldom hide it. I don't talk about my diabetes at all in my professional life, unless it comes up in conversation. When conversation turns to diabetes, and it does occasionally, I offer what I know and draw from personal experience. I think I am at some advantage because I was first diagnosed with type 2 and when things really fell apart for me, further testing discovered LADA. In a nutshell, I don't want to wear a sign that says; "I am diabetic." I do freely talk about my diabetes when asked, and, of course, among friends.
Sometimes, it is good to be diabetic.
I have never had a reason to hide it. But at the same time I also haven't had a whole lot of people to relate to either. I wear my medic alert bracelet and have a colleague at work who is on a pump so we have some good conversations about ratios etc, but I work for my husband in a small business so it's not like I'm going to lose my job as a result of D. So the reality is I have never hidden my D and don't anticipate a time when I would have to hide it, I guess in that respect I am quite blessed.
My gift to my husband of 25+ years was to get my blood sugars under tight control so that he would feel confident enough leaving me this weekend to play in a poker tournament. He just texted me to wish me luck in the club championship golf tournament I am playing in tomorrow. I am a very lucky girl, not only to have his confidence and support, but to be able to play golf and feel good and enjoy life to its fullest.
Unlike you Richard I told everyone, even though I was cautioned not to tell anyone. I was dxed in July 5, 1959 and I was 16. I had been losing weight and my Mom, believed in healthcare. She took me to the dr. if my nose was running because I had allergies but for some reason I don't or can't remember if I was dxed before then.
I remember it was a Sunday morning and I woke up not being able to breathe (now I know I was going into DKA). I was hypervenitaliting (sp?)so my Mom arranged for me to go to emergency. Now here is where it gets fuzzy for me I remember going toward the front door but before the front door there was a vestibule. My brother, who was four at the time remembers me passing out and falling on the floor. Anyway I do remember being in the hospital for almost a month. In that time I was shown how to take my insulin (animal insulin).
When I went back to school after summer break I told everyone but my teachers seem to know. I don't remember being treated any differently by my friends and if they thought different I didn't notice. The night I gratuated from high school the nurse gave me sugar cubes and something that I could break open and put to my nose if I felt faint (now that I've remembered that it seems funny..it also shows how much they knew about Diabetes. I gratuated at night because at that time they had A and B classes and when you gratuated from B it could fall in January, which is when I gratuated.
When I started to work I always told my employers that I had D since at that time I was eating on schedule.I always had the feeling that I was told not to tell anyone because it was a thing of shame and I didn't feel ashamed I knew I didn't do anything to have D.
At 50 years old, I was Dx'd. I ignored the symptoms a little to long, ended up in the hospital with DKA. After a week away from work and in the hospital, it was hard for me to hide everything from the people that I work with. I didn't really want to either. For a long time I was not under control, would be hypo one minute, and hyper the next (seemed like anyway). I let people around me know what to look for, and what to do to help me if I passed out. I show them where I keep my emergency kit and how to use the glucagon kit. We spend 40 hours a week working together, and feel safer just knowing there is more than just me watching over me while at work. Sometimes it is irritating to be asked "are you ok" 2 or 3 times a day. But reassuring at the same time.
My Busted Pancreas…that “But you’re not overweight” comment is made frequently by ignorant non diabetics. That is an opening for educating these people.
Zoe, I am gad you are teaching. I did that for 34 years…full time. My students used to like my drifting. I taught math, and that meant less new material covered. lol
Rock, it is easy to see you aren’t a shy guy. That tattoo says it all!! lol
Brian, I agree that it can be good to be a diabetic, for some of us who have very good control. I am convinced that I would not be as healthy if I had not been a diabetic. I love to eat, and I would not have eaten so many healthy foods.
Clare, that sounds great! My wife is a chronic worrier, and she does not have confidence in my traveling without her. I have not needed assistance with a hypo in 5 years, but she insists on being with me when I travel. Good luck with your golf tournament!
Betty, that is a great attitude! I am pleased when people say they realize that their diabetes is NOT something that causes them shame. Good for you!
Eric, I am sure you feel more safe since your fellow employees know how to help you, if needed. I am glad you have that security!
I did for a LONGTIME but after I got married and later when my daughter was diagnosed with Type ! I had pretty much found the DOC and was talking openly about being a Type 1. Good thing too b/c when my daughter was diagnosed she told me she so looked up to me b/c I didn't let it stand in my way of doing things. B/c I was REAL open about it she was and is too. Waaaay back when I was diagnosed it was a bad thing but by the time my daughter was diagnosed it was accepted in her school. Not mine back in the 70's.But I won't go there now. I was just glad that she knew what to do & I knew what to do and how to do it. Now we compare notes. I told her that things had really changed from 73 to 99 and she was surprised at how much things HAD changed since then. Life huh???
hmmmm, interesting question. I'm old and work for an insurance company, both of which would incline me to consservatism? I'm sort of promoting gambling with death as much as shooting anything...
I was diagnosed T1 at the age of 30. At the time, home BG testing was coming into common use. I never hesitated to take out my meter and test if I felt I needed it. I took on the attitude that my health and safety depended on treating myself whenever/wherever I happened to be.
My open testing and injections led to many discussions and questions from my fellow students and workers. There is so much ignorance about T1 diabetes, I felt that my openness allowed me to do a little bit of education one person at a time. I did try to be discrete when I lifted my shirt to inject in my abdomen, out of respect for those that may have had an unnatural fear of needles. Once I went on the pump, this bit of awkwardness disappeared.
My last stitch of anonymity fell away when I teamed up with a hypo-alert service dog two years ago. Now I spend part of every public outing explaining to people why a sighted person accesses public venues with a 51 pound Yellow Labrador Retriever. I don't mind these inquiries most of the time; they give me a chance to explain a little bit about T1 diabetes and how these amazing dogs do what they do.
I know some T1s prefer to keep their medical condition concealed from their co-workers due to discrimination. I think their fear of discrimination is legitimate but the best way to stamp out that discrimination is to show your workplace competence and demonstrate that diabetes does not diminish that capability.
Great topic! Richard, you have done a great job of managing this disease over a very long time. Your continued vitality inspires many.
I was recently diagnosed in May and at first I didn't want random people to know, although one my neighbors knew as she knew I was ill before I was hospitalized and had offered to drive me to the doctor. My family told her what happened and she had already recommended her endo doc- her father was type 2 in his 70's and she is pre diabetic now.
I have told some friends and of course my family knows, but I'm still not sure about telling people at work. I will go back in late August(teach part time in a college) and I'm hoping that things will be more stabilized with not so many lows but I may have to tell my students that I may need to leave the room if I have a low at some point.
My endo thought that I should keep one glucagon pen at work but I don't plan to do that. I just plan to manage things super well so hopefully it won't ever be a problem. Maybe this is a bad idea though. I am quite stressed out about this, I am really worried about managing all of this as my job can be very stressful at times and I still don't feel that great after everything I have been through- in addition to DKA I had complication of a dvt- I was re-hospitalized for that and I'm still in treatment for that.
If I eat in a restaurant now, which is rare, I usually do my testing and injecting in the open. My health is more important than having to conceal everything from strangers I guess, but usually I prefer a little privacy for injections and testing. I think as time passes I will be more open about it most likely.
I can't believe how little most people know- even before my diagnosis I did not consider myself to be that knowledgeable about D by any means, but I still seemed to know more than a lot of people I have encountered lately. One of my docs thought that I could control my diabetes type 1 with only diet, she is very intelligent and knowledgeable overall about many areas of medicine, but she didn't seem to realize that I need insulin to stay alive, I had to tell her that and then she accepted it! lol.
No; I don't hide my d but i do hide my snacks.