I was diagnosed with type 1 diabetes as a little girl. There isn't much I remember about life before diabetes. I got diabetes as a kid and I handled it like a kid for a long time. I didn't have a lifetime of bad habits to break and I don't remember what it was like to not worry about bloodsugar. Not really, anyway.
My twin was eight when she was diagnosed, so diabetes existed in our household for years before I was diagnosed with it. I was recently asked what advice I'd give to a friend who was recently diagnosed with diabetes. At the time, I came up empty.
I'm not exactly a model patient or a role model for folks with diabetes. And because I probably don't have a lot of little kids reading my blog, I probably am speaking to the wrong audience anyway, when it comes to offering advice to those who are diagnosed with diabetes as children.
If kids or parents of kids were reading this, though, I'd tell them that we're all rooting for them and that they're not broken and that it isn't their fault. I'd give them a big hug and tell them they can do anything they put their mind to, and that it might require a little extra planning and strategizing--that's all.
I've made life an adventure. Before turning thirty, I had already lived in six countries and traveled, worked, studied, taught and volunteered everywhere from Prague to rural India to Germany to Taiwan to Italy and China and back home again. All while having diabetes and taking multiple injections daily. I've run a half-marathon through the lava pits of Kona's Hawaiian summer and climbed the Great Wall of China in the snow.
I'd guess I'd tell them honestly that they might have to grow up a little too fast sometimes, but that it will pay off down the line. They can still be kids and still have fun and to not let anyone tell them they can't do something or can never eat something just because they have diabetes.
I'd tell them everyone is happy they're here and doing well. As a girl, I felt guilty about having diabetes because it was a burden on my parents and family. My brother sometimes had it rough with two big sisters with "the big D," and I know how hard it was for my dad to give me my shots in the beginning. And it made me feel bad.
Don't feel bad. And really, no little kid should feel guilty for something outside their control. But kids have a way of filling in the missing bits of information about the world and their family and their lives to their own detriment and blaming themselves for things beyond their control. Diabetes has made me feel ashamed at times. Like when eating sweets. Yes, I can eat a donut, but I am always so keenly aware that I am eating a donut. I wish I could be nonchalant about it.
But I can't, and that's that. Instead, I ask myself how diabetes can help me to be of service, how I might be able to help in some small way. I read an old Good Housekeeping article on Michael J. Fox while I was waiting for the doctor the other day. As a celebrity living with chronic illness, he realized he was in a unique postion to help. Fox asked himself if there was something unique to his situation that he could use to help people--and he realized there was. He went on to admit, "At first, it was uncomfortable. Nobody likes to say, "Hey, look at me!" I got this thing, and I spent years and years hiding it. It was counter-intuitive for me to do that."
Fox has a lot of good stuff to say about living with a chronic illness (you can read the article in its entirety here) What follows is an excerpt--for those of us living with chronic illness.
Rosemary Ellis: GH has 25 million readers every month; a number of them dealing with challenges related to a chronic illness. What would be your advice to them?
Michael J. Fox: I would say look at the choices you have, as opposed to the choices that have been taken away from you. Because in those choices, there are whole worlds of strength and new ways to look at things. Again, everybody has tough situations I don't mean to be pat about how they should deal with them. Certainly people have a lot tougher situations than I've had to deal with. But I will say we are all dying from the moment we are born. This is not just rehearsal.
RE: What surprising truths have you learned about yourself since this diagnosis? What aspects of your personality did you maybe not even realize were there from before?
MJF: When I was younger, I was always described as happy-go-lucky. Then I drank and I partied did all that stuff that might tell you maybe there was a little bit of untruth in that [description]. Now, the surprising thing is that when I say stuff, I actually mean it. I don't have to do the work of trying to formulate my point of view. It just is. And it's surprising how much I love life. I just really have a good time.
RE: What has being a dad taught you about coping with the disease, and about life?
MJF: It has taught me that there is not one moment that is frozen in time. There is no better example than to watch four kids grow up. For instance, I'm not feeling particularly steady right now, but this is not going to last for more than a couple of minutes. Same with raising kids. There are no moments you have frozen in amber. It's moving, it's changing, so appreciate what's good about right now and be ready for what's next.
RE: Are you are learning things that, frankly, you wouldn't learn otherwise?
MJF: Yes: empathy, resilience, and also sorting out what's important from what's not things like vanity. I saw a birthday card the other day, and it said, "If you didn't know how old you were, how old would you think you were?" I started changing it in my mind right away to, "If you didn't know how sick you were, how sick would you think you were?"
RE: And what was the answer to that question?
MJF: Not very much, not very sick. It just becomes what it is. Like right now, I'm just weathering this [tremor] as I'm talking to you; I just need to pace around a little bit. [I've learned] to make the separation: It's purely a physical thing, and if you don't care what it looks like and it really does not feel that bad, then it's not that big a deal. It's just distracting. So [getting up] I am going to walk around for a second.
What advice would you give newly diagnosed diabetics, or others living with chronic illness?