Define Diabetes Advocacy. Additional thoughts.

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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  • Diabetic Mainer  On January 27, 2014 at 12:23 pm

    In America, we’re great at measuring ourselves against an extraneous ideal. Unfortunately, in doing so, we often ignore our own individuality.

    Each of us has our own skill sets, personalities, interests, etc. Therefore, there is no universal ideal for advocacy. As advocates, the main thing we should concern ourselves with is whether or not we’re fully utilizing our own potential.


  • painspeaks  On January 27, 2014 at 1:46 pm

    Reblogged this on The Daily Advocate By Painspeaks.


  • Scott E  On January 28, 2014 at 8:49 am

    Thanks for continuing the discussion on this topic, Stephen.

    I don’t know how much of this reluctance-to-advocacy sentiment is due to people feeling self-doubt or unconfident, though I’m sure it’s a substantial portion. In my case, it’s more a hesitation (or unwillingness) to lead and to organize and to commit. Day-to-day life can be tough, and sometimes we just aren’t willing or able to take on the extra responsibility which isn’t directly correlated to our own well-being.

    But you bring up a wonderful point — that throwing thoughts or ideas out there -even if it means someone else runs with it, is a great start. There is most definitely someone else willing to listen. Something I’ve been learning, both personally and professionally, is that there are no “small” people or small ideas. If a tiny improvement in a device interface, political process, or something else has negligble cost or detriment but a significant gain, why WOULDN’T they listen? Many decisions aren’t made by a consensus of a huge number of people, just a couple based on what they THINK is right. Give them more info, and perhaps they’ll make choices more to our benefit.

    I’m glad you took the time to expand on this topic.


    • StephenS  On January 28, 2014 at 9:04 am

      Thanks Scott… I completely understand about time constraints and trying to keep our own lives going well, and that takes up a lot of our time and mental capacity. In fact, I’m wrapping up a long-standing commitment in the Spring (unrelated to diabetes), and I have to finish that before I can do much more than what I’m doing now. Great points.


  • Surface Fine/ Alecia (@SurfaceFine)  On January 28, 2014 at 4:47 pm



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