Following up on Sunday’s rare post concerning advocacy and what it can look like sometimes, I offer you this. You may believe that I have no business inserting myself into this conversation, and maybe for you, that’s true. If that’s the case, feel free to move on to another blog. If not, read on.
I’m really glad that advocacy has been discussed a lot lately around the Diabetes Online Community. It seems to have brought about a wealth of ideas and interest from people who have either become weary with their advocacy up to now, or have been looking for a jump start in their outreach to others. For me, all this talk has been like a mirror being held up to my diabetes life, forcing me to examine what I’m doing and if it’s really enough. At my age (51), I’m totally okay with that, and whatever the answers to those questions may be, and what those answers may be inspiring me to do in the future.
But I also understand the reticence of others in our community who cringe every time the word advocacy is uttered. I’ve seen it in Twitter feeds where people express their disappointment that they could never be the kind of advocate that others are. I’ve seen it in blog posts where people describe being uncomfortable in a room full of superstars. I’m not a psychologist or anything, but I think that may have something to do with the fact that we’re always comparing ourselves to others. Here in America, we’ve kind of cornered the market on that kind of behavior, measuring ourselves against what we think is the ideal (fill in the blank).
I’ve been thinking about this a lot lately, and I don’t know that I can assuage any fears you may have about reaching out to others, or starting a new initiative, or conversing with someone who appears unapproachable. But if I may, and especially since I’m older than most of the people reading this, let me share a few thoughts I have on the subject of diabetes advocacy. I hope you’ll see this as a pep talk. In no way is this criticism. You’ll notice I use the word advocacy (or advocate) a lot—23 times, in fact. I’ve done that on purpose. I hope using the word so much helps take some of the stigma away for you. Here goes…
First: We’ve all been there. We’ve all felt unworthy at times, less worthy at other times. I haven’t taken a poll, but I’m pretty sure there’s not a D-Hero (or D-Shero) you can name who hasn’t also felt that way at some point in their advocacy. From experience, I can tell you that this feeling will pass. And it may come back… and go away again. It’s okay to let it go. It’s more than okay to make it comfortable for someone else to let it go. Letting go of that feeling is less like jumping off of a mountain, and more like walking inside from the cold. The warmth feels good. Embrace it.
Second: You deserve to be part of the conversation. And part of the solution. If there’s ever a time when you don’t feel that way, go back and read that again. There’s no time limit on it. You always deserve to be part of the conversation, and part of the solution. It comes as part of your admission to this club we all belong to. Knowing that requires also knowing that you have some responsibility (another scary word) to hold up your end of the discussion in a positive way. Negativity will only bring you back to where you started. But don’t worry. I think you can handle it. If you don’t think you can, go back and read this paragraph again.
Third: Maybe you’re worried about walking into a roomful of amazing thought leader D-celebrities, or just a roomful of PWDs in general. I understand, and I don’t want to invalidate your feelings, because they’re real. But… can we work on this please? I do a lot of hero/shero worship myself. Hero worship is good sometimes. But worship someone because you think they’re worthy, not because you feel like you’re not. The few amazing thought leader D-celebrities I’ve met would probably tell you two things from the outset: They’re not comfortable with hero worship anyway, and you are totally worthy. If you’re helping others, or trying to help others, you are fifteen kinds of worthy. You: Worthy. Believe it.
And another thing: I guarantee that when it comes to advocacy, there’s someone out there, who is just getting their feet wet, or is in the same frame of mind you’re in, who wants to be just like you. If you can, help that person. If there’s someone having difficulty with their advocacy, or if they seem to be stalled, embrace them and their efforts. That’s a form of advocacy in and of itself.
Fourth: How to start? Start by asking people about themselves. This is the single best piece of advice I’ve ever gotten from The Great Spousal Unit. Just do it. Send an e-mail or a tweet and ask someone about their lives, or about their advocacy, or about how they bolus for pizza. I’m biased on this because I see one-on-one relationships as one of my strengths. But it really works. Ideas hatch from questions and answers. Now, you might think that one-on-one isn’t exactly advocacy at the highest level. But have you thought about the exponential impact of the one-on-one experience? It’s like the shampoo commercial from the 70s: You talk to one person, who tells two people, who tells two more, and before you know it, BAM! Advocacy happens. And it all starts with a single question.
Fifth: Not knowing everything is okay. Ideas often start out as one thing, and morph into something else. Don’t not start something because you haven’t got it all figured out yet. Oh, and it’s true that sometimes, one idea begets another idea which sometimes begets the mother of all ideas. If your idea evolves over time, it’s probably because one generation of an idea is better than its predecessor. That’s all right. In fact, it’s progress.
Sixth: Sadly, some efforts will fail, for a variety of reasons, none of which may be your fault. If you’re a true advocate, it won’t be your only effort. This almost goes without saying, but I’ll say it anyway: Failure of one aspect of your advocacy does not mean that you’re a failure. Failure of many aspects of your advocacy does not mean you’re a failure.
And guess what? Some efforts will succeed. When those successes happen, rejoice in them. Not because you did something. Because you helped someone. You helped lift someone up, helped enlighten them, helped them live a better life. Feel free to perform a little hero worship on yourself from time to time.
Seventh: Share ideas and information. Sharing your idea with others validates your idea, for one thing. For another, it helps to generate other ideas that may push your advocacy to another level. And if you have a tool that really works for you, share it. Everyone has a good idea or two. No one has all the good ideas. If how you do something helps someone else kick start their efforts, why not share? I believe that would be advocacy in two places at the same time. Pretty cool.
Eighth: I said this yesterday, and I’ll say it again today. Far more lives are at risk due to inaction. Far more lives are changed due to action. Even when it’s scary for you. Disclosure: It’s scary for me sometimes too.
Finally: Don’t… Stop… Thinking about tomorrow. Recognize that where you are today isn’t (or doesn’t have to be) where you are tomorrow. The past is the past. Only a reference point. Understand that just like diabetes, good or bad, every day is not the same, and will most likely be different. Know, for what it’s worth, I support you… no conditions. Know that many others feel exactly the same way.
You are so completely worthy. And capable. Advocacy comes in all forms. Bravery does too. And your advocacy, big or small, in whatever form it takes, will change lives. Don’t ever be afraid to make a positive impact on someone’s life. I think you’ll find that your life-changing diabetes advocacy will change your life too. That’s not something to be afraid of. That’s something to get excited about.
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Back on January 6 (it seems so long ago), I wrote a piece in which, among other things, I lamented the fact that I have to waste time going from my truck back into the house when I forget my meter. In fact, I do the opposite a lot too. Anyway, that post sparked this banter between myself and a reader:
Yes, I was sufficiently shamed. I took to the internet a short time later and ordered up these:
So, for the record, I now own four Accu-Chek Nano® meters: One for the downstairs (it has its own place in the kitchen), one next to my bed upstairs, one for my truck, and one for my desk at work. Granted, with the cold temperatures we’ve been experiencing here in the Land of Pleasant Living, I’ll have to perform sort of a mouth-to-meter resuscitation in the truck to get it to work right now. But the weather will soon turn again, and before we know it, we’ll be back into the balmy upper 30s (single digits Celsius). Given the cost, it was ridiculous for me to not get an extra meter or two. As we all know, the meters are cheap. The test strips, the things most of us use the most, are probably our single largest expense next to the cost of an insulin pump or CGM.
Why the Nano® again? I know I could go out and get a OneTouch® Verio™ IQ, or an iBGStar®(though I don’t have an iPhone), but the fact is: I’m comfortable with the Nano®. The readings, to me, seem pretty accurate. And most of all, they’re consistent. If I see a 191 on my meter and I don’t believe it, I’ll put another strip in from a different lot right away and check again. Always, the next reading is within five points of the previous one. I guess that’s all I can ask for right now, although a light on that thing would be a very nice plus.
The other consideration, of course, is the fact that my strips are still covered by my prescription provider (ExpressScripts). Unfortunately, my 90 day cost for strips, which was $80.00 a year ago, is now $180.00. For the same thing. That’s $400.00 extra per year, if you’re counting, and it’s only about a $60.00 per 90 day discount over the lowest retail price most recently found on Amazon. You’re welcome, ExpressScripts executives. Enjoy your tropical vacation and your sportscar and whatever else your big friggin’ bonus brings you. At least I’m not paying full price. Yet. And I mean that in the most professional way possible.
Now I only have one more problem: I don’t drive to work most days. I take the local subway, which means unless I carry one around, I won’t have a meter in between the office and arriving back at the station near my home. As someone who had a terrible low on the train home one day a few years back, this is not acceptable. So… do I buy a fifth meter? Do I carry one of the ones I have already? I obviously don’t carry a purse, I don’t carry a “murse” (hate that word), or a backback, or a briefcase. I like to keep moving, so I don’t like carrying anything extra. I don’t know. This sounds like the whining of an already spoiled person. I’ll figure something out, but I will have a meter on the train with me.
Where was I? Oh yes… You comment, I listen. Sometimes it might not seem like it. But I try to put myself in the shoes of everyone who makes a comment here, positive or negative. The one above was a good suggestion that got me to make a good decision. Keep ’em coming.
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