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.
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.
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.
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.
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.
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?
Do people sometimes get the idea you're promoting shooting something other than insulin?
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 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.