About 17 years ago, I was diagnosed with type 1 diabetes. I was eleven, and between my parents and I, we did the best we could to control my blood sugars. Unfortunately, I had the privileged of getting slapped with an autoimmune disease and puberty at the same time. Raging hormones are unkind to those without a functioning pancreas.
I was treated at Riley Hospital for Children in Indianapolis, Indiana. The care I received was unconditionally amazing. The hospital, the staff, and the clinic worked with me and my family ceaselessly. They worked with my parents to get me on insurance since my dad was self employed. They never shamed me for the difficulties I had with my A1C. I even got to participate in a study on the effects of type 1 diabetes among teenagers. It was incredible.
Until I turned 18. I aged out of pediatric care – as well as my state supplied insurance. In the days before the affordable care act, there was literally no option I could find to insure myself. My parents, at this point, made too much money to qualify for the “adult” version of my previously children’s program. My college didn’t offer insurance through the school. Neither myself or my parents could afford private insurance.
And so I went four years without insurance – without seeing an endocrinologist. I only survived thanks to patient assistant programs through the companies that made my insulin. I didn’t check my blood sugar often because the test strips were so expensive.
This is when my burnout started. I stopped counting carbs the way I should. I frequented bars with my friends and got rip-roaringly drunk without a second thought of my glucose levels. I was hospitalized twice – once for ketoacidosis and once for chronically low blood sugars during a severe bought of flu. I couldn’t extend the physical and mental requirements for proper care.
So I gave up.
I denied the opportunity to attend graduate school to pursue my dream career because I knew I needed insurance through my employer. So I started job hunting right after graduation. I got a job, got insurance, and started trying to put the pieces of a proper care regime back together. But I was angry. And I was tired. And in the five years since I’ve never been able to really dedicate myself to the level of care I achieved when I was younger.
Recently I’ve found out I have dot hemes in my eyes, and I know I’m on the road to retinopathy. I’m trying to get myself put back together, but the burnout and the routine are so far gone I find I’m floundering. Is there anyone else out there who has struggled with long term care? Is there anyone else who has experienced this crippling feeling of burnout? How did you cope? What tools did you use?
All help, fellowship, and advice are extremely appreciated.