Sharing your diabetes diagnosis: When and to whom do you share information?
When asked to join the Diabeteens medical "expert staff" team, one of the first requested topics for discussion was this very issue. With who and when do you share your very personal diagnosis of diabetes. I even feel uncomfortable blogging about this sensitive issue. However, I realized that if I was uneasy about the subject as a healthcare professional, our readers must be equally, if not more, uncomfortable. I want to address this especially touchy issue and not deny that this is a very uncomfortable concern, especially among teens.
Firstly, you are not a diabetic. You are a person with diabetes. This is not just an issue of semantics, but rather an important statement that has become politically charged as well (especially in organizations such as The American Diabetes Association and The Juvenile Diabetes Research Foundation International). Having stated the above, you must think of yourself as the same person you were before you developed diabetes. You are still you. This is an important concept because it underscores how you relate your diagnosis to others.
Your diagnosis of diabetes does not change the fact that you are a family member, student, athlete, musician, dancer, etc. Nor should the diagnosis change what others think and thought of you (smart, friendly, sarcastic, loving, stylish, obnoxious, etc). What does change is how you inform people so they can help if you should ever need medical assistance. I am sure you know people who are allergic to penicillin or peanuts. Most of these kids wear medic alert bracelets so that if they have a severe reaction, people know it and can get help...fast. The same thinking applies to you. If you have a severe low and people don't know that you have diabetes, they may think something else is awry, like you were up all night partying and are sleeping in class, you are bored, on drugs, or a number of other false accusations. Sharing information is for your own safety.
After the initial diagnosis, most people don't know what to think because they don't have all the correct information. They wonder how they could even have diabetes. They often do not understand the differences between type 1 and type 2 diabetes. Your friends may say, "No big deal-my grandmother has it and just takes pills." These statements may be incorrect, especially if you have type 1 diabetes because without the appropriate education, people arrive at their own (often wrong) conclusions. Knowledge is power. The key is to educate your extended family, friends, teachers, coaches... the world at large. Once you demonstrate your understanding of your diabetes and provide the proper information, friends and acquaintances will become more comfortable and begin to relax. As a result of their increased comfort level, you then re-become the person you were prior to your diagnosis of diabetes.
When do you tell people about your diagnosis? The team where I work at Children's National recommends informing all those people who come into contact with you on a daily basis: your friends, teachers, coaches, dance instructors, etc. We expect and hope that you will share your knowledge after the diabetes team instructs you on how to care for your diabetes. You, in effect, become the expert and can teach others how to help you...when you need it. (Of course, the school nurse or aide has to be in the know as well). It is especially important that your friends know so that they can be aware. After all, your friends will be able to detect behavior changes very quickly. After the initial excitement, things will settle down and soon your friends will be announcing the carb amounts in each brand of pizza. (Trust me, my teen patients tell me this all the time.)
Another important reason to share your diagnosis is to ensure that you are not penalized for becoming high or low during class or examinations. As a result of the Americans with Disabilities Act, you must be given appropriate accommodations for testing in the classroom, as well as for the SAT (bathroom breaks, access to carbohydrates, etc.). There should never be an excuse for you not having the same advantages as those without diabetes. If people don't know of your diagnosis, they will continue to remain ignorant and not be able to provide the support you need.
I hope that I have been able to reassure you that as a person with diabetes, you are still the same person as you were pre-diabetes. It might not make it any easier to hear this, but you are still you.