It’s hard to explain diabetes to others. To most, diabetes boils down to a vastly over-simplified condition summed up in one sentence: “Oh, he can’t have sugar, he’s diabetic.” Many people could probably watch an acquaintance with diabetes down an entire pizza with no idea it might be an issue (and we all know it is — the dreaded “pizza effect!”), but become horribly concerned when they see that same acquaintance nibble on a small cookie totaling 15 carbs!
To really understand diabetes, you need to understand how food is metabolized in the body; how quickly food breaks down into sugars; how quickly those sugars enter the blood; which foods cause a rapid spike; which foods cause a slower, more mellow spike; what kind of other factors play into the absorption of sugar and insulin; and so on. It’s not just a simple need to “avoid sugar.” But most people don’t really NEED the full explanation. Aside from the occasional “too-nosy” family member who’s constantly monitoring us to make sure we’re “being good diabetics,” minute-to-minute management of diabetes won’t be a concern to our friends and family. They’ll accept our simplified “my numbers are good” report and leave it at that (and for that too-nosy family member, don’t be afraid to ask him to back off — it’s not HIS diabetes, and you deserve to be treated like adult…but that’s a topic for another blog post).
But there are people in our lives who are directly impacted by our diabetes — our husbands, wives, girlfriends, boyfriends, parents, children, and others who we live with day-in-day-out. It’s one thing to have an “aunt with diabetes” who you see every few months. Her diabetes isn’t something that impacts your life except for perhaps an occasional worry. But when your husband has it, when your wife has it, when your child or your father has it, that’s a different story.
So today, I want to share two perspectives. First, I want to talk about the perspective of someone living with diabetes who is married to a partner without diabetes. And second, I want to talk about the perspective of someone who doesn’t have diabetes him- or herself, but who is partnered with someone who does. Both roles carry their own unique challenges and demand a certain set of skills and understanding.
Diabetes from the outside — a guide for the Diabetians
I am married to an incredible woman who I love more than anything in this world. I would jump in front of a bus to save her without giving it a second thought. We have been married almost five years (this summer is the five-year mark), and together eight. I have had diabetes for the past 21 years.
Diabetes was initially a “scary unknown” for my wife, and for her immediate family. They weren’t really sure what to think about it, and they were concerned that it might mean a future with failing health that would impact her choices. Most of that concern was coming more from her parents than from her, but she shared some worry. And so we spent a good deal of time talking about what diabetes really means, what the possible complications are, what steps I need to be taking to care for myself to avoid those complications, what low blood sugar looks like, how to treat it, and other details to help turn this “scary unknown” into a “serious-but-manageable KNOWN.”
It’s important to remember that our partners are looking at diabetes from the outside — from a position that can feel excruciatingly helpless. All they can do is offer support, but they can’t manage our condition FOR us. They can’t check our blood, or monitor our every move. They can’t choose our foods for us, or calculate our insulin for us. We need to remember that so that we LET THEM IN. Because if we shut them out (either because we “don’t want to worry them,” or figure “they can’t do anything about it, anyway”), all they can do is imagine what MIGHT be going on. And with diabetes, they’ll probably imagine the worst! Before you know it, you can find yourself in a nasty pattern: You close off because you don’t want to burden them, they push for more information and overload YOU with worry, causing you to shut them out MORE, causing them to worry MORE, and before you know it, diabetes is tearing apart your relationship.
We have to understand that when we decide to partner with someone, diabetes becomes something SHARED. Sure, you’ll still be the one living with it, and you’re still the one ultimately responsible for your own health and choices. But the impact of diabetes is now shared. So be open with your partner, talk about what’s going on, educate him on how this disease really works, and let him be your copilot! Trust me, that bit of advice saved my life one morning when I woke up too low to take care of myself and my wife sprang RIGHT into action giving me apple juice until I got my head clear enough to realize what was going on. If we hadn’t talked about hypoglycemia and what the signs were, she might have just left that morning assuming I was just too tired to wake up yet.
A guide for the copilots
I’m in a great position to write this, because I happen to have an extraordinary copilot in my wife, and grew up with another extraordinary copilot in my mother. If you do what each of them has done, you’ll be in great shape!
First, remember that there is a limit to what you CAN and SHOULD do for your partner with diabetes. I’ve often seen parents in particular OVER-involve themselves in their children’s care, to the point where their children are not learning to become self-sufficient. Now, I’m not talking about young children here — obviously a 5-year-old needs an extraordinary level of help managing this disease. But once someone reaches adolescence, it becomes pretty imperative that HE be responsible for his condition. My mother, my first copilot, did an amazing job letting me manage my own condition. She was there for me, and was always providing that safety net. But she didn’t count my carbs for me, she didn’t micromanage every choice I made. She let me take charge of my own condition. She let me learn how to count carbs, even when she knew she was a little better at it than I was. The only time she might jump in would be in the case of a MASSIVE miscalculation. But the little ones? She let those go. And because of that, I learned from them and corrected things for myself.
My wife has been an equally amazing copilot. Like I said, she saved my life at least once. And yet, even after that, she didn’t let worry overtake her. She didn’t close off, or become overbearing and micromanage every choice I make. She has done an amazing job of taking this disease seriously, doing what she can to help, while keeping a broad perspective that understands the limits of what she can and can’t do.
When my wife has concerns, she raises them. But she does so in exactly the RIGHT way. She doesn’t scold, shame, or overwhelm me. She doesn’t try to “take over” for me. She simply expressed them fully and matter-of-factly, and allows us both to dissect them, and figure out a plan to address them together. In other words, she understands that diabetes is not something she has to “control for me,” nor is it something that’s just there for me to deal with. She has partnered with me, in the fullest sense of the word. She asks for my perspective, she has educated herself on what diabetes really entails, and she understands the limits of what is within her control and what is outside of it.
I think in the end, living with diabetes as partners boils down to the same principles as anything else in a relationship. Be honest with each other, be open, educate yourselves, be supportive, and do what is within your power to do, but understand what is beyond your control and let that go.