There is a silent expectation that anyone afflicted with the task of managing Type 1 Diabetes must remain upbeat, and be grateful that this disease is manageable, where there is truth in these statements, there is also a pressure associated with the plastered on smiles and almost required denial of the hardship that Type 1 Diabetes management carries with it. I feel there is a negative stigma attached to people who can openly discuss how much Type 1 Diabetes sucks…….most days.
I find the link between this negativity can be traced to people who have never lived a day in the life of a diabetic, and who assume that cancer would be a worse diagnosis. Each disease carry’s with it horrible days, devastating hardships, and diseases shouldn’t be compared to find the worse situation. It’s unfortunate that the comparisons between Type 1 Diabetes, Type 2 Diabetes, and all other diseases get tossed around. Furthermore it’s frustrating that in the moment of frustration, most often brought on my the lack of control that becomes evident almost hourly when managing Type 1 Diabetes, people who don’t understand what all goes into diabetic management are the first to speak about their disdain for the complaint, and how grateful the diabetic community should be for the advances of medicine, etc.
I want to make perfectly clear how grateful I am for the advancement of medicine, I am indebted to those who have found ways to keep my son alive through the advancement of medicine, science, and technology. Yet to live in the glass house that this is enough to properly manage Type 1 Diabetes is unrealistic. Even with all the technology; a Dexcom CGM, a Pump, proper management of Type 1 Diabetes involves a continual vigilance.
There isn’t a minute of any day that goes by where Type 1 Diabetes isn’t ruling the day and it’s activities. I fondly remember the excitement attached to outings, pre-diagnosis. These days, packing the supplies and snacks needed for the “what ifs” that happen 90% of the time is exhausting. Tack on the through the night checks, the fixing of the low blood sugars, fixing of the high blood sugars, constant blood checking, monitoring of exercise, assessing what carbs have actually been ingested to cover the insulin that had been injected…….there isn’t a time where diabetes management isn’t the focus.
As a bystander, allow the grieving, even if the diagnosis was 5 years ago. One never really gets over the affliction that an auto immune disease carries with it. Be supportive, understand the need for advocacy, be OK saying, I don’t understand but am here for you. Most times we just need an understanding ear and a hug. The worry that is attached to Type 1 Diabetes, especially in small children, is real and never goes away.