Parents and T1D teens, we would appreciate your assistance with a school project!
Our daughter was diagnosed with type 1 diabetes at the age of 6. She is now a senior in high school and working on a Senior Scholar Project investigating type 1 diabetes and mental health. Through her research she has have found that type 1 diabetic patients are not often evaluated for mental health issues. The CDC estimates that only around 25% to 50% of diabetics with depression are diagnosed and treated, a number that is shockingly low.
Our daughter has created a survey with questions she feels are important for doctors to understand how teenage patients are handling their diabetes.
We are looking for type 1 patients between the ages of 12-19 to answer this completely anonymous survey which should only take 5-10 minutes. The data will be used to write a research paper and present to her peer group. This is personally important to us all, and we hope you see the value in having such a survey.
While I haven’t had mental issues, it is something that caused me personally, all the mental health I had been working towards before diagnosis. Instead of checking for T1 my doctor did everything else before that even though he’s known me since I was born, and knew it made no sense, so my mom had to beg to get me tested practically, I am sorry if my answers on the survey aren’t quite the ideal patient haha, but it’s true to me at least
Thank you so much for answering the survey! There are no “ideal answers” and the comments others have left are very interesting. I can imagine the mental anguish and stress that happened just trying to get a diagnosis. Moms know something is wrong and good for your mom for insisting you be tested. We really appreciate your comment and response to the survey
Thank you for studying this. I would like to add to the mental health component that I have dealt with. I have found that striving for perfection, for better numbers, better compliance…having a sense of failure…those are my mental health struggles. Never quite good enough.
The burnout component definitely hits from time to time as well. Ive been at this for 37yrs, and caring for 12 yo son for 3 yrs. Mentally so draining. Bad sleep, nagging problems, puberty, bad site, tech failures…the constant is what I struggle with most.
I think this needs to be appreciated in the medical community as real and important in whole patient care.
Thank you, Karen. I have to constantly remember the stress and pressure my daughter faces and puts on herself. “Never quite good enough” is exactly right, and I feel awful when I contribute by asking her about it constantly.
My daughter really felt passionate about this topic because it is so personal and unfortuantely not addressed by doctors. Our pediatricians have her take a survey before wellness checks about mental health but not the endocrinologists. You would think the medical community would see that chronic illness doesn’t just affect patients physically over time but also mentally. We appreciate your comments and hope your son can take the survey. Take care of yourself!
Hi y’all! I’ve had T1DM for over 40 years. I am so grateful for the modern technology that helps me better control the inevitable blood sugar fluctuations. Life is getting easier in many ways compared to the way it used to be living with T1DM. I think some of my advice to people with recent T1DM diagnoses is that you will be running a marathon with diabetes care – just do your best every day to keep healthy, but sometimes things will be out of your control. I view insulin as saving my life, so I have to work with it every day to keep going/keep healthy.
I’ve started reading a book called “Diabetes burnout” by William Polonsky, who is a researcher that has published numerous articles related to mental health and diabetes. He gets it!