For any of you who have known me for a while, this is an old post from an old blog, but I really feel it belongs here instead. I wrote this post to celebrate World Diabetes Blog Day on November 9, 2010 (though I didn't finish it until the 10th), when the prompt was, "Six Things I Want You To Know About Diabetes." I think these are still things that I want everyone to know. So bear with this slightly-tweaked old post, below:
"So yesterday was World Diabetes Blog day, much of which I read (while forgetting to change my pump cartridge, oh the irony), but I failed to finish a blog on time, mostly because I found out about it the day of and I wasn’t home between 8:30am and 10pm. This is characteristic of me being late to the party when it comes to diabetes social media and support. However, I hope you’ll indulge my late discussion of the topic, “six things I want you to know about diabetes,” even though, if you’ve been reading D-blogs over the past day, I cover a lot of familiar ground. We’re all different, but many of the issues are very similar. There are many things I could talk about, but this is what comes to mind.
1. Diabetes is expensive. The financial part is the most tangible. The Ontario government is helping me by providing a $7,000 insulin pump free and $2400 a year for supplies. That barely covers insulin cartridges and infusion sets, and it wouldn’t cover them if I wasn’t reusing each cartridge once (the rep okayed it) and hadn’t finagled a 15% discount out of the rep because I have no outside insurance. It doesn’t cover insulin, really expensive testing strips, lancets, alcohol wipes, sharps containers, among other things. Many people reuse what they can or go without because it’s just so much. My first experience with diabetes and the US healthcare system, which would not have provided me with the thousands of dollars worth of stuff I’m getting now without insurance, was watching an older man argue, in tears, with a woman behind the counter at a government office, because he couldn’t afford testing strips and insulin and was afraid he was going to die. Without insurance, I don’t actually have a real choice of what country in which I can live. Even in Canada, the only way I can ensure I get insulin for free is by living in a hospital, which makes no financial sense. Canada doesn’t want to open a can of worms by making even lifesaving prescriptions part of their universal coverage, but there’s talk about it in Ontario and I’m hoping it’s coming. I don’t even know if the US will have basic universal healthcare in my lifetime. There are compassionate care programs, but it still sucks.
2. Mentally and physically, the costs are also high. I am always thinking about this, even if I forget to do something crucial, like change out my damn cartridge. I forget because there are so many things to do, all the time, figuring, injecting, hoping, being totally frustrated when the time of day or month, weather, amount of exercise, type of food, stress level, mood, incorrect nutrition information (Tim Hortons website and this carb book I have list their bagel with a 16 carb difference, which is an extra slice of bread) or something I can’t even think of that I’m experiencing screws up my calculations, which have to be extensively precise and now include carb counting, blood glucose level, insulin sensitivity factor (changes over the course of the day), insulin still in my system, and whatnot. Luckily my meter calculates some of this for me, but it’s an inexact science at best. I never thought that math would be such a large part of my life, but it is. So it’s not just “match carbs to insulin and you’ll be fine.” I could give myself the same amount of insulin for the same food two days in a row, and it could look like I just rolled the dice of chance, with two totally different numbers. Snake eyes.
When the anti-healthcare brigade decides to call me a lazy insurance sponge, it makes me want to cry. Because this is a full-time job, substituting for a malfunctioning organ. And whenever I get it wrong, I feel physically terrible, whether I’m thirsty and bone-tired with scratchy eyes, or shaking and sweating, also bone-tired, if I don’t just pass out and possibly not wake up. Lows are scarier than highs, in many ways, but for a long period of time I craved them because I could eat sugar without being judged, and I could balance out the high blood sugars on my A1c. I know there are a lot of perfectionists here, like me. How would you feel if the only thing you couldn’t get a perfect score for was the one thing your life depended on? And there was little you could do to study for tests you failed arbitrarily? Most of us would drop that course. I can’t.
3. So here’s the thing. Shaming doesn’t work, except to make us feel bad, and most of it is totally incorrect. Most people can’t tell between Type 1 and Type 2. In a way, this shouldn’t matter except to understand how we treat ourselves is different. In reality, it matters a lot to the self-esteem of many, because Type 2 Diabetes has been unfairly stigmatized as the disease of fat lazy couch potatoes. Yes, being overweight and inactive can promote insulin resistance, and eventually Type 2, if you are genetically predisposed to it. But Type 2, as Type 1, is mostly a genetic lottery. Type 1, which I have, is an autoimmune disorder. I’m fairly sure I was always a Type 1 who was caught early, thanks to the diagnosis of my cousin. I was totally asymptomatic, the doctor almost refused to test me, and I had a fasting blood sugar of 27. (It’s supposed to be 4-6.) Neither pills nor diet worked, and my pancreas did eventually implode. And I have a zillion other autoimmune problems thanks to my overactive system that freaks out and kills anything in its path, healthy or not, much like the Killbots from Futurama (“did someone say Howitzer!?” Blam blam blam).
However, I got shame two ways because of this. First, there was the “shame” of thinking I was Type 2, that I “brought this on myself” as a 12-year-old. Misinformation and the media, always shaming. Then, there was the “shame” that diet and pills didn’t work, and that I had to go on insulin. Insulin is NOT a failure, it’s just what I need, because I am a Type 1 and I don’t have my own. But I felt like I was going down the levels of diabetic hell, becoming a worse person, a failure, at each step. Because of how it’s portrayed. However, in a sick way, I was glad when the Type 1 manifested itself. Because suddenly it wasn’t “my fault”. Part of my inability to accept my diabetes as a part of myself, psychologically, until basically a few weeks ago (Dx 1997) was this shame cycle, particularly the shame of the term “double diabetes” – that is, I have Type 1 with the insulin resistance of Type 2, which makes everything much worse. Though in my case and others like mine blur the lines a bit, please try not to confuse Type 1 and Type 2, and, more importantly, don’t shame either of us. Please. Don’t comment on my meter numbers unless I’m cheering. Don’t food-shame. I need to follow healthy eating guidelines as much as you do, not much more. If I want a piece of cake, or a glass of wine, I’m having one. I don’t eat or drink some things, like regular pop, because they’re not worth it to me (or even taste good anymore), but I just have to take externally what you produce internally. Sugar-free doesn’t mean it’s better for me, when you look at carbs and other properties (for example, laxative effect, really?). I felt better once I started eating more real food, that had sugar, and took insulin for it, rather than gross (in 1997, really gross) sugar-free chocolate. No, I shouldn’t eat an entire box of cookies, but you shouldn’t either. Let me eat cake.
4. That being said, insulin is the best thing I’ve got, but it’s not a cure. It is a lifelong therapy. There is no cure. Herb #17 isn’t a cure. The raw food diet isn’t a cure. Exercise is not a cure. I can’t exercise and diet this away. With Type 1, if I don’t take insulin, I can eat NOTHING and my sugars will still rise of their own accord. You can’t eat less than nothing. If I stop taking insulin, I will die. Maybe not for a while, but I will (however, I can go without it for a bit, so don’t freak out if I take my pump off to shower or something. It’s not like a medical show where the patient needs it immediately.) Much like diamonds, diabetes is forever. I don’t want to minimize horrible diseases such as cancer and the trauma and death they cause. But the head of the artificial pancreas project said something that struck me. He said that a cancer, while the worst thing ever during treatment and having the possibility of being fatal, can be cured. You can be cancer-free. You can never have to deal with cancer again. You can be a cancer survivor. You can’t be a diabetes survivor. You can live with it, and you can live with it the best you can. But it will be with you all your life, and it will get you in the end.
5. Even if you think you don’t need support, you probably do; the right kind of support is amazing, the wrong kind is really damaging. Again, I was Dx 1997. I went to my first official meeting for diabetics…last Wednesday. I’m not a support group type, at least I wasn’t, particularly in my teen years. I’m a perfectionist, which I determined meant I could only be good enough if I handled all of this myself. I didn’t want to inconvenience anyone who wasn’t diabetic by talking to them about it, and I couldn’t stand the idea of some sort of “my name is Ilana Lucas and I’m a diabetic” sort of touchy-feely group for losers who couldn’t deal with it themselves. Diabetics were losers, and I didn’t want to identify with losers, even if, again, they had only lost in the sense of genetics. I couldn’t make diabetes a part of me without letting it consume me. What changed my life? This is stupid, but here it is: social media. There’s a whole world out there with interesting people who happen to also be diabetic and talk about it. It’s a new world to me, and I’m grateful for it. I’ve gone from being a closed book about this to starting a separate Twitter feed about my diabetes so I could talk to other people (but it was still a separate part of me) to essentially incorporating it into my actual life account, and therefore, life. I like support. I’m super happy to answer questions as long as the non-diabetic asker doesn’t assume they know more about my condition than I do. This includes super-smart doctors who have said “I don’t understand why you can’t just do this” – no, you don’t understand, because you’ve never had to do it. This also includes “Well I vaguely know person x who has diabetes and she dieted it away/lost her feet/tried colour therapy (I’m not kidding, someone went on a diabetes community to tell us that the colour yellow would help us).” Social media is great, but it’s also awful for the spammers who like to “follow” me and sell me on misinformation and cures that enrage me. Read the comments on a lot of blogs and posts and it’s people selling, selling non-cures that can actually kill, and I’m scared people try these things, because this can be a claustrophobic disease to live with and the next breakthrough is always “five years away,” no matter how much time has passed. Anyway, I’m a researcher and a dramaturg. Talking about the stuff I know? It’s what I do. But I don’t want to be a bore, still, so you can tell me to change topics.
6. But finally? I have a sense of humour about this. Please don’t think we’re humourless grumps. The only jokes about diabetes I hate are the ones that are completely misinformed and portray us as stereotypes – so, the kind of jokes everyone hates about their group. To get along with this thing, I have to find it kind of funny, because it’s so ridiculous. I started my morning with my pump falling out of my pants, hitting the floor, and ripping the infusion set out of my body. I could have freaked out about it, but really, I just had to laugh. You really just have to laugh."