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 50 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 75. After 69 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!
I don’t generally make it a point to bring it up. I choose to test and treat in private. Really only my close friends are aware, not because I hide it but because that’s just the way I prefer it… I also don’t make a point of discussing other health issues openly and in public either because I consider them all private matters. I do appreciate that there are forums like this where we can all talk about the subject openly, and this is a great place for that. In my real life though I keep my problems mostly to myself
Richard, I understand this on a lot of levels. Non D folks are uninformed, and also many T2s I come across--no disparagement T2s.
I have always been a big mouth, a talker, and an educator by trade and by heart... I have always felt it was in my very best interests to: 1. INFORM everyone around me of my T1 and HOW to help me when needed. It has made a huge difference in my life and saved it a time or two.
2. EDUCATE whenever and wherever possible. Knowledge saves lives of those educated. OH! and occasionally the educator as noted above.
I was 10, but even then I let my teachers and friends know. Had an ancient history teacher in 6th grade who kept a jar of hard candy on his desk for me--one of my favorite classes ever.
What I have is not my fault. The only way to change the world is to educate.
I wasn't diagnosed until I was 30 years old, in 1984. I openly shared this news with family, friends, classmates, and teachers. I didn't make a big deal out of it, just tried to let them know that sometimes I need quick access to sources of sugar.
I've never tried to keep my health info a secret, but I respect the wishes of those that do. I've often found that the best way to hide something is to leave it in plain sight! People are way more interested in their issues and lives than my health concerns.
People I am around more frequently such as co-workers when I was working, I tried to give them a few quick facts about T1D, for my own safety. I usually explained things that would help them understand hypoglycemia and what to do. I often answered the common question about hypo's: Does that mean you need more insulin??!
I happened onto the online diabetes forums about the same time as you and have learned a great deal from fellow PWDs. I attribute a large portion of my current success to things I've learned from other PWDs, not doctors or other health professionals.
Now that I move through the world with a hypoglycemia alert service dog, all pretense of personal health privacy has been abandoned. There's rarely a day that goes by without me engaging some member of the public about why a seemingly sighted and able-bodied person has a service dog with them. It helps me to emphasize that many disabilities are not obvious. I see this as my chance to educate, one person at a time. The people, however, are usually more interested in my dog, Norm, his calm manner and well-behaved demeanor.
I was 18 when I was diagnosed in 1961, I had no idea what diabetes was & I certainly didn't know any other T1s. But I think when I got back to school after several weeks in hospital my class mates knew what was wrong, They may have been slightly jealous as I got fresh fruit instead of nasty puddings for lunch. This was a convent school & the nun who was matron had been a nurse so she looked after me & made sure I took my insulin, no blood tests then. At college I think I just told people I knew & the college certainly knew. That's how it has always been, I tell friends & co-workers, & it's no big deal. I had to explain why I carried around a box with syringe & insulin, I did get a few strange looks when hitch hiking across Europe I took out a syringe in a youth hostel!
I was in the UK so I didn't worry that employers would balk at me because of health care coverage.
I didn't know anyone else with T1 until one of my closest friends developed it when she was 30, she's a biochemist & knows a lot about carbohydrate metabolism etc so it was great to have someone to compare notes with.
So no I don't hide my diabetes but I don't make a big deal about it. I tell those I am in contact with & if they tell others great. Now I've had it for over 50 years & I'm still reasonably healthy & active I feel proud that I've made it this far. So I may tell more people nowadays!
Sam, Spock, Terry, and Annabelle....I appreciate your replies. There is such a variety of situations here. Some of you are still somewhat secretive about your diabetes,and others are very open. That is quite alright. I suppose that it has a lot to do with our individual personalities. We do what makes us feel comfortable with our diabetes. I used to hide it and now I am very open with it, so I have experienced both extremes. I will be scheduled as a speaker at a diabetes conference in July, 2015. I am actually looking forward to that.
Richard-I was very lucky to have a mother who stood up for me, when I was 10. She inspired me greatly. She actually linguistically ripped the head off a role model of mine who will always influence my life. When role models go head to head, you pay attention.
Yes. A lot of it is personality, but a lot of it has to do with the strength of those important people who walked with you at the beginning.
I don't hide my diabetes, nor do I tell everyone about it, however with me checking dexcom it may be more obvious now if anyone notices which most people don't and anyone who is around me for more than a brief period will know about it pretty quickly. I test and inject in public and I often discuss it with people if it seems relevant. When I got out of the hospital I was in such trauma from everything that I didn't want anyone to know, but then I realized it was too hard to hide something like this, for me anyway, and too time consuming so I stopped worrying about it.
There may still be times I treat myself in a more private area depending on the situation or because of how I'm feeling or convenience etc. I'm generally quite open about various health issues if they come up with people who seem to want to discuss them. I have told 3 people at work that I carry a glucagon injection in my purse and what to do if I ever were to have a severe low bg and pass out. And I now tell students I have a chronic health condition that I may have to treat in class or leave class to treat.
I do enjoy educating people about not getting into a situation like mine which should never have happened. I went to numerous doctors with symptoms for several years prior to dka and yet not one of them did appropriate testing, especially when I had symptoms of high bg and the result was that I wasn't diagnosed until I was actually in dka and even then I was not hospitalized until the situation got even worse.
So I feel if I tell my story to people I may actually save a few lives and or help people to diagnose themselves. A young woman cutting my hair recently asked me about diabetes when I mentioned mine because I think my dexcom alarmed or something. She was worried that she is getting type 2 and she had been gaining a lot of weight, so I mentioned metabolic syndrome and various other things to her. I think I may have scared her though with too much info, hopefully not.
I don't hide mine too much either. It's more important to me to know what my BG is up to than to worry about people fussing about what I'm doing. Occasionally I'll get a comment but I can usually deflect them by referencing exercising and stuff like that. I almost always have my meter with me, just in case. I've never had anyone yell at me about it, e.g. "you can't bring snacks into Disneyland..." but part of me would like them to try. Plus, I have my D-tattoo...
But nor do I stand on the tables in the cafeteria, with a flag and a bullhorn announcing to total strangers that I have an incurable disease either! There is a critical difference between being private and hiding it.
When we are friends, I will share more private information with someone. When we are close friends I will share more serious details than when we are merely "acquaintances". I think the difference is important re: this matter... IMHO-IMHE
Guide Dogs for the Blind named Norm when he was born. Per their convention, all litter-mates were given names beginning with the letter "N." There's no double meaning that I'm aware of.
Yes, many people that have met the two of us remember Norm's name but not mine. I accepted long ago that Norm is the "rock star" and I'm simply the "roadie!" It's all OK with me.
Hard line. I never stand on tables in the cafeteria with a bullhorn. What is the difference between "being private and hiding it"? Linguistically, you know..keeping it private and hiding it? Seems the same
I get the difference of friends.. In my mind and the longevity of my life, the more people have knowledge of my T1 and how to assist, the better.
I'm agree with Spock. I'm not shy about it at all. I generally have my meter on me and will test anywhere, bars, driving, races, etc. I am also comfortable relying on my CGM but have to unclip it to see what things are up to and am not particularly shy about that either. I've stuck new infusion sets in at my desk at work and I don't think anyone has ever noticed. I'm quick and not shy but we are all busy as heck and, despite 4 people (cubicles...) within 10' of me, I don't think anyone's noticed.
I've also tested in mediations, shindigs that happen when a case is in suit and the parties can't agree on the value for whatever reason. Somebody figures if we get together to chat, meet the principals, etc., maybe things will fall into place and get the case settled so you go to a facility, c. 9:00 AM and stay until you've exhausted all the attempts. Usually, the mediator is a retired judge who will go back and forth between the parties and try to get them to agree on whatever. It's kind of fun although doing one case all day can be a grind. They have snacks, etc., if it really goes on, lunch or dinner may come up and if I'm eating, I'm testing!
Hi Richard! I don't hide my diabetes. But I don't brag or make a big deal about it either. The only time I really share or talk about it is on the DOC. In my day to day I don't jump into the closet to test or hide my pump. If someone should see me doing diabetes things and asks I will answer any questions, but this is rare because I don't make a production of it. Hiding anything is not something I have time for or feel a need to do.
I do sometimes make a production of myself when a favorite song is playing and I see an opportunity to to jump on something and play some air guitar and do a little lip syncing. Otherwise I tend to go about minding my own business and expect others to do the same.
You hide something you are ashamed of or don’t want anyone to know about. You keep things private that you don’t think are other people’s concern or tasteful to draw attention to in certain circumstances. There’s a large difference in my mind
There are many replies that have a common theme....willingness to discuss our diabetes with others, when they ask us questions, but otherwise not bringing up the topic. That is exactly the way I deal with it. I do, however, like to talk to diabetics online and give them encouragement and help, when appropriate. I am a retired teacher, so it is only natural for me to want to teach people about diabetes. That is especially appropriate when I am a speaker with a diabetes group.
I will admit that I'm closeted at work for all my autoimmune issues (food allergies, diabetes, thyroid, and RA). There are a few folks (previous co-workers in another dept, current supervisor) who know about one of my issues but none know about all of them. Mainly because of 1) judgmental attitudes--I either did something to deserve my illnesses (even though one started in childhood and they snowballed), 2) my co-workers think they can "cure" me with remedies, or 3) they "police" me on what I can eat, drink, or do.
It's easier to communicate with the online communities and the patients at the infusion center where I get my monthly Remicade. No matter how much someone sympathizes with you, they cannot truly understand until they empathize and walk in your shoes.
I may open up more as time goes by with my diabetes, it just depends. Generally, I don't see people pester T1s like they do T2s--I think they are afraid to do so. :-)
i dont hide it or try to keep it under wraps. i tried to do that one weekend when i spent it with friends of friends and it was really hard work. it was as my honeymoon was fading out and i was angry that i couldnt get my numbers in range and i just couldnt face explaining anything. in day to day life, people know about it. my coworkers know, because we have long teaching days and i want to be on an even keel when im teaching. my students dont know and never will. its got nothing to do what were doing in class.
two new teachers just started this year and theyve seen me testing and havent even asked if im diabetic or what im doing and it has been heaven to be around people that can see what im doing and not having to answer the same questions. they have just left me to get on with it.
if people ask questions, i will gladly answer them, but when people dont, and just act like its a matter of course, its nice, i feel very normal. or straight, as acid likes to say!
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