Hi all. I was diagnosed as a type one about two weeks ago. I am still coping with it and learning about what will be my new life.
How did you tell your friends and family about what’s happening? How do you not become defined by T1? Since my diagnosis, it is all I can think about. Also, how do you establish boundaries with your friends? For instance, my best friend thinks it’s appropriate to tell the women he casually dates about my condition when I haven’t even told some of my close friends. I just feel like I have no control over whether or not I have type one, but I should be able to control who I tell about it/who knows about it. Maybe I’m just being sensitive. Can anyone relate?
Hi, Jennifer. I have been T1 since age 5, 59 years ago. My approach has always been to not tell people unless there is a good reason. One good reason is to alert them to the risks of low blood sugar levels and how they might recognize it. This would be if I go out with a friend, attend a group function (tell the host/hostess) or whoever you bring with you. Of course family. I would tell your friend to keep his/her mouth shut about your private life, though.
You might put together a letter to email to your closer friends and family, explaining the disease, the effects of low glucose levels, and the hyper-glucose mode as well, which may prevent you from eating when everyone else does.
About a year to two years from now, the artificial pancreas should be on the market, and it will be a big life changer in simplifying and extending our lives. I can barely wait for it. You can search for that term on this web site when you have some time.
Diabetes is a major life changer. It does have one side benefit, in that we have greater reason to eat better and get exercise. There is a lot of good experience on this site, and not everyone will agree on all things. See your doctor every three months so you can update your A1C test, and get help staying in control and improving along the way.
As you know by now, carry candy with you all the time. I found over the years that the soft sugary bite size candies work best. The Mandarin Orange Brach’s is the best, individually or group wrapped and about the right size to overcome a hypoglycemic episode. They act quickly, are sweet, don’t melt in the heat or from body heat. They also last a long time. If they get kind of hard, they will still work once you get them into your mouth. I also found that getting them to partly dissolve in your mouth gets the sugar into your system faster, but it is hard not to inhale them when an episode (also called “insulin reaction” by oldtimers) occurs. the best alternitve are actual sugar cubes, or real glucose candies, but they are somewhat costly. At home you should have an injectable glucose that your doc can prescribe. This is for someone else to inject into you if you become unconscious or subconscious and don’t know what to do. This is the most dangerous risk you run. That is a reason insulin pumps are so great. Some of them turn off the insulin when it senses your glucose is too low but you don’t respond to the alarm. You will eventually (an hour or so at most) rise in glucose levels all while sleeping or in semi-conscious state. It is a life saver. However, with artificial pancreases near the market, it might be smarter to wait. Check with your insurance.
Brach’s Mandarin orange
Hi Jennifer @J3nn1f3r,
An other “old-timer” checking in and suggesting that you do not need to publish the fact that you have diabetes, or in the new parlance that you are working with your T1. Yes, close family should know as well as certain friends, room mates or particular coworkers and depending on your situation someone at school.
I was diagnosed at about your age [actually was severely ill on my 16th birthday and this past week on July 4th celebrated the beginning of my 60th year on insulin] and told only a few close friends that I had diabetes and when I returned to [an out-of-town private] school in September no one there was told; in retrospect, probably not wise. A few years later when applying for work I never mentioned ‘diabetes’ and was offered a really good position with Prudential Insurance; on my first day of work I completed all the paperwork including health insurance application and was immediately fired BECAUSE I HAD DIABETES. Illegal now, but it taught me to keep ‘diabetes’ to myself. After that I became very careful telling people because, in my estimation, very few people really understand what T1 is all about and continue offering “false myths” as advice and also profile us as being inferior.
The advice @davyboy offered is great, and the tools you have at hand - like glucose meters which Davy and I never had - will allow you to really know where you are at all times and alert you to treat a hypo or hyper a appropriate. If you wear a pump or use a pen, you always have insulin handy for those crazy highs [mine are usually caused by not accurately counting carbs added to enhance restaurant foods] and for those sudden lows you know to have ready fast acting carbs with you. The last few years, especially on bike rides, I find it handy to carry a few smaller granola bars. The granolas I carry [including one always in my meter holster] are 17 grams of carb with 7 grams each of fast acting sugars - the balance of the carbs are more complex and tend not to cause sudden peaks and then a deeper drop in BG.
Welcome to our lifelong group! I’ll share with you that with a little effort your life will be very fulfilling, and also lots of frustration - just roll with that. I hate to have to welcome you to T1, but now that you are one of us please feel free to share, ask and learn with us.
I am reading this because I also am recently diagnosed (11 March 2016) and having the same concern about telling people. My family and very closest friends know, but I have not advertised much. I sometimes have hypo unaware and have had several scary episodes, therefore, I would like to tell more people, but at the same time don’t want them to think that I’m being a whiner.
That is terrible loosing your job. That had to be terrible to suffer that loss then to have to suffer in silence. Thank you for sharing your stories and advice so that the rest of us don’t have to suffer alone.
Thanks Karen @karenCHQ,
Yes, it was difficult then, but I got over that episode soon enough and things have turned out well. Now I “broadcast” the fact that I have diabetes and have been able to positively affect other people now beginning their life journeys with T1D. I use my experience to help educate others who don’t have diabetes but who may interface with and need to recognize someone experiencing a “low blood sugar episode”.
I am also newly diagnosed, about 4 months now. I can totally relate to many of the things you have said. It also consumes my thoughts, but thankfully not as much as the first few months. I can also relate to not wanting others to reveal your diagnosis for you. I personally don’t mind telling people about my diabetes because I view it as a good way to educate people about what type 1 or (1.5) diabetes is and isn’t. The problem is when someone else is doing the telling, they take away your control and usually miss the important educational component. When I was first diagnosed I had a similar situation and I just had to tell my friends and family that I appreciated their interest/concern but to please respect my wishes and leave the sharing of my status to me.
It can be overwhelming at first but I think eventually you’ll become more comfortable and go from “life with diabetes” to just “life”. Also showing everyone that you are the same person you were before your diagnosis but now you have a superpower that allows you to detect how much carbohydrates are in something.
As others have, I would also like to welcome you to the club. It is not one most, if any, of us would have chosen, but now that we are in, it is nice to know that we have a built in community that understands what we are going through in ways our well intentioned friends and family just can’t.
I wish you the best of luck,
Hey, so I am now 27 and have been a type 1 since I was 9. I might have been a little shy at first to tell people that I have diabetes but I don’t have any problem telling people now. Although, it rarely comes up in conversation. I remember in elementary school having full tutorials with my classes; they were always intrigued. I would say ultimately that it’s your choice. I pretty much always want those around me to know that I am diabetic, in case anything happens. I also want them to recognize the symptoms of a low especially; however, I would say that I’ve really never had anyone have to step in and say anything to me. I can generally catch it first.
If I’m talking to someone about it for the first time, I try to be super educational. Most people will think it’s the same as type 2, so I educate them about that. At this point, most people have forgotten that I am a diabetic, as my life looks the same as theirs. I have never had a negative reaction to me telling some one that I’m diabetic. Most people think it is interesting and might even ask questions; a lot of people may have family members or know other people that are diabetic so it’s no big deal.
I do tell my employers once I am hired. I have never had any problems with that. I let them know that I am in control of my diabetes and it has never affected my work.
I think as time goes on it just becomes a part of your life and really no big deal. Take all the time you need though! You’ll do great!
When I first got diagnosed with T1D two months ago, I was devastated. It just wasn’t a part of my life plan to have a chronic disease. When I expressed this to my nurse practitioner, she told me that one way she has seen people get out of the post-diagnosis depression was to become an advocate for the disease. Ever since she told me that, I have become very very vocal about my disease. I test my blood sugar while sitting in the front of my classrooms, I talk about my blood sugars so often I’m afraid that people get annoyed with me, I presented to my school’s medical club about the disease and the importance of raising awareness and fundraising for research, and I even wrote a personal testimonial for my school’s newspaper. At first, being this vocal scared me a lot. I didn’t want people to think of me differently because of my disease, but nobody did. I’m still the same person, just with a chronic disease. T1D doesn’t define you, and anyone who treats you differently because of it is not someone worth keeping around.
That being said, I have a close friend in the grade below me who has T1D, and she is very quiet about her disease. I think I am one of the only people in my school that knows she has the disease. And, after she explained to me her reasons for staying quiet, I can completely understand why someone wouldn’t want to advertise this disease to the world. It is something that is private and nobody (including your best friend) has the right to release your private information.
But at the same time, I see how her trying to “hide” her disease has negatively affected her ability to take care of herself. She barely ever tests herself or boluses before eating in school because she doesn’t want to be judged. Also, when she had a bad hypo one time, I had to come out of class to come help her because none of her other friends knew what to do.
While I know that not everyone will be as vocal as I am about my disease, I think that keeping so quiet about your T1D that it affects your health will hurt you more than help you. Being vocal about your health might seem really scary but I can promise that it isn’t once you get used to it. I am sorry to hear some of the negative experiences people have had when they were vocal about diabetes, but I can testify that being open abut my diagnosis has been the best decision I have made in a while. If you are worried that people will perceive you as “weaker” I can tell you that so many people have commented about my strength after learning all that T1D entails. They never think that I’m being a “whiner” or exaggerating the effects of my disease. People have even told me that they look up to me as a role model when they go through hard times in their life.
Even if you only tell a few close friends and family members about your diabetes, I am still really proud of you and all the fears you had to overcome in order to tell people. Educating people is really essential to both your health and the progress of T1D awareness.