It’s a good question, and one that prompts an epiphany: How would it be if I could work collaboratively doctors on the disease that’s present in my body? How would it be if I didn’t argue with every suggestion presented to me? Why do I want to shut down whenever a guy in a white coat claims to know more about my body than I do?
All good questions. And I think diabetes patients are different than those who suffer from other autoimmune illnesses. Our diet, lifestyle and use of pharmaceuticals can influence the impact of the illness.
It’s assumed that diabetes patients will eat three meals a day, and that’s how meal-time insulin is prescribed — to be used three times a day. But what if you’re like me and you don’t eat that way? Do I change my ways and eat more than I feel is good for me?
I’m often told to exercise more, even though exercise has no impact on my glucose levels. I get ample exercise anyway. I was told for years I have type 2 diabetes, which is caused mainly by poor food choices and lack of exercise. I’m now told I have type 1, or slow-onset type 1, or latent autoimmune diabetes in adults (LADA) — so exercise has no impact. Food is a different matter.
My avoidance of long-acting insulin was finally knocked senseless by my latest bout of ketoacidosis. The doctor in the intensive-care unit said my concerns about weight gain is secondary to my body’s need for insulin. I begrudgingly accepted that notion.
So the other day I had an epiphany — how about seeing the disease as separate from my body, or even me? Is it possible I could team up with medical professionals to manage an illness that inhabits my body without feeling I’m being criticized?
At first I thought it was entirely possible. What a great idea! But then I ran through scenarios that have arisen in the past, and I’m more doubtful now. Diabetes, whatever kind I have, is mainly managed through short- and long-acting insulins. When you go to hospital, the meals presented have a high amount of carbohydrates, higher than I’m used to eating. The doctor suggested that if I wanted to get out of hospital quickly, I should eat more hospital food. I just couldn’t do that. I also knew I wasn’t incarcerated, and could leave whenever I wanted to.
Defensive. Don’t I have the freedom to eat the way I think is best for my body? Prior to diagnosis (nearly 20 years ago), I ate carbs like crazy. I loved pizza, desserts, bread and anything sugary. All that time, my pancreas was silently deteriorating from overwork. It wasn’t until I turned 45 that a routine blood test showed high glucose.
“You have the pancreas of an old lady,” my doctor said, adding my illness would only worsen as I aged.
So I have issues around how much and what type of insulin I inject in my body. And I raise a ruckus over eating carbohydrates, because they require me to inject more insulin (which packs on pounds). I do NOT want to get a second diagnosis of type 2 — there is such a thing as double diabetes, having both types 1 and 2.
I know people who have great respect for doctors, and agree to any and all suggestions. I wish, on one hand, I could be like them and be less analytical. I wish I could drop “But…” from my vocabulary. Life would be so much…calmer.
Fortunately or unfortunately, I am who I am. I had a career where I asked questions. Now I’m retired from journalism, but I still ask questions. It’s a good thing, generally, but not really welcomed in the medical community.
I don’t like feeling defensive. My training in conflict resolution taught me that defensive people feel they haven’t been heard, and it’s true. It’s rare for me to find someone who understands that and phrases advice in a way that makes sense to me. I’m not trying to be difficult.
And it’s pretty clear that few professionals in a hospital setting wants to hear my thoughts on childhood emotional neglect causing diabetes. I save that for this blog. The only way to change minds in western medicine is from a groundswell of support from those who suffer from the illness — and know the reasons for it.
If you have thoughts, please leave a comment. I’m heartened by the growing support for my blog and Facebook page on emotional diabetes. Maybe one day it will be recognized.