I was very grateful for my friend’s second question in response to my answer to the first question about my daughter’s battle with Type 1. The question asked was a clarification about her treatment and a genuine curiosity and concern for my daughter and family. The misconception was common enough. In this case it was the idea that insulin is administered only once a day and that this daily administration is sufficient to regulate my daughter’s blood sugar for the entire 24 hour period. My friend’s surprise about: the frequency of insulin doses; the erratic nature of blood sugar; the effect of diet, exercise, stress, growth, and food on blood sugar; the three hour vigil of blood sugar monitoring…. My friend was surprised and that was a gift.

It was a gift for two reasons. Firstly, on that particular day out daughter’s blood sugar had been running high, and we didn’t understand why. Though I think I know why now, I was frazzled and frustrated and worried and sad and afraid. That my friend expressed both surprise and concern was a relief. Type 1 Diabetes is full of surprises and concerns.

Over the past year and a half, I have come across many well-meaning friends and acquaintances who have offered both advice and consolation which is mis-informed. The misunderstanding is basically founded on the belief that Diabetes is one disease. Actually the term “diabetes” only refers to the symptoms of another disease or disorder. Aretus, 2nd Century Greek physician, coined the term diabetes which means “as through a syphon.” The term describes the diabetic symptom of constant urination. Aretus noted that his patients ‘passed water’ as through a syphon. The reason for this constant ‘passing’ is that a diabetic’s blood sugar is too high. In order to correct this, their kidneys go into overdrive and filter out the blood sugar by passing it in urine. High blood sugar is what diabetes is. However there are numerous causes of high blood sugar. For a Type 1 diabetic, the diabetes is caused by an auto-imune disease which renders the patient’s pancreas unable to produce insulin.

The most common comment I’ve heard about my daughter’s diabetes is, a well-meaning but ultimately un-helpful word of encouragement. (You can read a list of well-meaning mistakes assumed about Type 1 diabetics here). Upon hearing about the diagnosis, a person will say, “Now that they’re on insulin, they can live a normal life.”

Yes, it is true that Type 1 diabetics can do everything a person without Type 1 can do and relatively unhindered by their disease–if it they are treating it. However, it is only ‘normal’ if you consider normal: pricking your finger four times a day — at least, carrying numerous supplies with you everywhere in case your blood sugar goes too high or too low, living in fear of passing out because of hypoglycemia or irreversible organ and nerve damage if you’re hyperglycemic, succumbing to ketone acidosis, reading every food label and counting every carbohydrate you eat, administering four injections a day — at least or a inserting a canula every three days if you’re on an insulin pump — for the rest of your life.

Type 1 diabetics do not live a ‘normal’ life, rather they live, and they live because they fight an hourly battle and are vigilant about their treatment.

It’s Not a Normal Life was originally published on Grace Presbyterian Church