This post was written by my wife, Shanda. I think it provides a great glimpse into how diabetes effects the loved ones of those who have it. It took me over two years to really start to think about what my diabetes meant to her and my kids, not just what it does to my life.
When Craig was first diagnosed with type 2 diabetes it was a shock. He had pretty much diagnosed himself before we got the official test done, but as a WebMD hypochondriac myself, in my mind I shrugged it off as "there's no way" and "he's overreacting". Then the official word came. And everything changed. I was devastated for him and for his love of sugary drinks and ice cream. But mostly, I was terrified. I was terrified of how he would react to the news. I was terrified I would lose him. I was terrified of the possibility of the genes being passed on to our kids. And as I began to read about the disease I became even more terrified of the risk of complications. But I knew I had to be there for him and be strong for him so I made the decision to stop reading about it all. Whatever COULD happen, I didn't want to know. Because I knew I would break down too and that wouldn't help. But that wasn't a good call to make either.
As I stopped reading about the complications I also stopped learning about the disease itself and about the ways he needed to manage it. And by doing that I started to lose him in a different way. He thought I wasn't interested and that I wasn't supporting him in the ways he needed. And although I didn't realize it at the time, this added to problems that already existed in our marriage.
For a year we got by, doing the best we could (well, him doing the best HE could) to change his diet, find a medication that would work, and get frustrated and emotional when things weren't improving the way they should be. And then when he switched doctors we found out it wasn't actually type 2 diabetes. It was type 1. And everything changed. Again.
Now he had to factor insulin into his daily life. I was nervous. I began to read about it again. I read about the scary night time lows. I read a blog post from somebody about an extreme night time low episode he had where he was hallucinating and became violent toward his wife. And it was scary all over again. I thought about what I would do in such a situation. And now more than just worrying about my husbands health and safety, I thought about my safety and the safety of our kids. I don't think I told him about these fears because I didn't want to make him feel bad or worry about us too. He didn't need that. But those fears were there in my mind.
He had to learn a new way to manage things. He had to learn to navigate the use of insulin and how it affected him at different times of the day, or with different foods he ate. He had to learn to navigate highs and lows and which numbers needed treatment right away and which ones could just be watched for a while. And I had to learn to navigate the mood swings that accompanied the highs and lows, a skill that I'm still not very good at. Our kids watch the things he goes through everyday. Checking his blood sugar, inserting a new cgm unit, giving himself injections... And while our daughter is too young to talk about it, our son is so smart and so intuitive and has been interested from the very beginning. He talks about blood sugar ("Mom, is it blood sugar? Or sugar blood?"), he very unselfishly eats candy so that daddy isn't tempted, he asks questions, he wants to learn, and he knows daddy is doing what he needs to do to keep himself healthy. And I'm proud of our husband for setting that good example for our kids, and for showing them that he's doing what he can to be around for them for a very long time. One night our son was pretending to read a book about sharks and he said the shark needed to check his blood sugar after he ate. And while it was very cute and endearing, it was also a little bit sad. Five year olds shouldn't have to know or think about these things. And when I think about the little ones diagnosed with type 1 at such a young age, and have to go through these things themselves, it makes me so sad and it makes me scared again for our own kids.
Craig said something in his previous post that is definitely true. As hard as I try to understand what he's going through, I will never truly know. And I think in a way this drives a bit of a wedge between us. Sometimes I feel like he is pushing me away because he thinks I just can't understand what he's going through so why try to explain and confide in me. And maybe, in a way, I push him away sometimes by not getting it and not understanding why he can't just do certain things. Whatever really happens, I know there are a lot of times that we both feel hurt and alone. And while I know that all marriages are hard and take a lot of work, I think what we go through takes even more work. And even more support and more understanding. And although there have been times that I wasn't sure we would make it through, I keep fighting because I love him and I promised to be here. And I hope he keeps fighting for us too. And I hope he fights for himself and his health just as much.
So I guess I have a request for everyone living with diabetes... I think it's true that diabetes is a very personal illness. The way you manage it and treat it, the way you feel about it, the way it affects every minute of your life... All depends on you. Everyone is different. Everyone handles it different. But it also affects everyone IN your life. So while I agree whole heartedly that you need to do what works for you, I also urge you to think about the people that love you. Let them in. Let them be there. Let them care about you and worry about you. It will help you both in the long run. Because while you are hurting or stressed out about dealing with it, it also hurts the people who care about you to see you hurt alone. Having support makes so much difference, no matter what you go through in life.