My name is Bethany, and I was assigned a research project. For my topic, I am speaking on the management of type one diabetes. This case is significantly special to me as I, too, have type one diabetes. A necessity for the task is to collect research that can further educate people about the subject, which is why I need your help! The T1D community is so superior, and I would love for you to please share how you coped with your diagnoses of type one diabetes, and at what rate were you able to manage it?
Thank you for your time and consideration in helping me achieve my research!
Hello @bethv03 and welcome to Type one Nation. I was 12 at the time. The diagnosis was a shock and a relief at the same time. When I was diagnosed there was only medium (NPH) and short acting (R) animal derived ( beef and pork) insulin and no blood sugar meters. I’m afraid I can’t describe a “rate” other than about 20 years of horror and denial and doing the minimum for survival followed by acceptance and then a little over 20 years (to current time) of good care and an a1c of 6.2 to 6.8%.
@bethv03Hi Beth and welcome to the JDRF TypeOneNation Forum! I agree with your assessment about the diabetes community and hope that the members of this community Forum will jump in and “talk” with you.
At my diagnosis 65 years ago diabetes was unknown to me [and to everyone else in my circle] so the only opinion I had was was annoyance that I’d need to stick a needle in myself, eat boring foods at the same time every day, put drops of my urine in a test-tube and add chemicals to cause a boiling reaction, wear white socks to keep my feet from falling off and be happy that I wasn’t already dead; oh yes, go back to the hospital once a year to have blood drawn for a blood-sugar test. How did I manage MY diabetes? … in the first 10 years “not at all” after the first fed months; during my middle years when I got involved with an organization involved in diabetes research and innovation and my body was used for experimentation “management was intense with good results”; and now in later life last 25 years] my management is considered “outstanding, greatly simplified, with outstanding results”. That third stage I attribute much to the improved insulin formulations, excellent and helpful tools and from learning from my experiences and from the diabetes community; the overall ruling change in my management during stage two and three was my ability “to accept my diabetes and run with it”, a huge change from my ignorant, confused and defeatist attitude - denial - of my early years after diagnosis.
Beth, who is the audience for your project? The people to whom you are offering information makes a big difference, for instance when I assisting people who don’t know that a half dozen different conditions are all “called diabetes”, the language and level are basic. When speaking other people with TypeOne such as at a JDRF function my terms need to cover a spectrum for newly diagnosed, care-givers, right up to right up to PwD who know more than I. When asked to share additional and new management techniques with medical professionals my language is different.
I was diagnosed at age 7 back in 2003/2004. Both of my parents work in healthcare (RN and Medic/fireman) so they recognized the symptoms right away and got me tested. Thankfully because of their professions and my age it was a relatively smooth transition. And since my parents saw first hand how terrible it goes when diabetes isn’t managed (both from family members and their jobs), it was always drilled into me to take care of diabetes. Which I am thankful for because I have always had great a1cs (most recent was 6.5%, worst ever was 8% just after diagnosis). I think I always had the mindset that since there was nothing I can do to change it, might as well deal with it because I don’t feel good when I am high or low. Since I was so young at diagnosis, my parents really took care of all my management until I was in middle school. I really started taking care of my insulin around age 11-12, but as I got to high school it became more about me taking control of my meals. I do think that has a lot to do with my age/parent’s backgrounds because I have had friends who were diagnosed around high school age and they had a lot worse of a time adjusting.
Hope this helps! As a fellow student researcher I am more than happy to help and follow up and give more info if needed
So 1st question how did I cope with diagnosis of type 1?: I was diagnosed at age 11. I was super sick and after weeks of doctors telling my parents there was nothing wrong with me and I was making it up, my mom took me to a different pediatrician after a teacher assumed I had a eating disorder because of how rapidly I was losing weight. The thing that finally made them take me in was my mom helping me in the tub (I always like baths when I’m sick). I was literally skin and bones and was exhausted but it was December in Minnesota and no one knew that I was that skinny not even me. So on the actual day of diagnosis I remember going through labs to test for dka and ct scan and I remember the pediatrician coming in and telling my mom I needed to go to the hospital now and that I had type 1. I remember just laying on the bed finally relieved to have a diagnosis after being told nothing was wrong with me. The first three days in the hospital I barely remember except for waking up here and there and my parents crying a lot. It didn’t really click until I was out of dka and went to take insulin for my first meal that I realized diabetes was life long and not just a really bad but quick illness. So when that happened and I had to inject for the cheeseburger I started crying and felt pretty bad for myself. The next day my dad took me to the pediatric cancer ward and I was feeling really bad for myself and he looked at me and said I know it may not seem like it now, but if you’re going to have something, be thankful there’s a treatment and that you get to have a normal life. So from that point forward I handled diabetes like a champ. I used to get pretty down on my diaversery and angry but that stopped around year 5. Anyway, this summer I was diagnosed with a heart arrhythmia- a genetic thing that I again had no control over just like T1. I took this diagnosis way harder than diabetes even though it impacts my life less and is just annoying more than anything. after working through it a bit with the help of a therapist I realized it’s because I never really grieved my diabetes diagnosis and I was feeling all this pent up anger and disappointment that I never let myself feel before. So weirdly, but also not weirdly, I’ve accepted the diabetes fairly well, but I also havent let myself fully grieve the loss of what my life could have been which is something I’m still working through and that’s hard to do! So I applaud people who appropriately have grieved it and have allowed themselves to feel because I think it’s super important!
In response to your second question I would say I accepted it pretty quickly, but definitely have some unresolved trauma as explained above. I will say though I’ve always cared about management and never went through a stage where I haven’t tried my best with it so in that way I’ve always accepted it if that makes sense.
