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What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

16 Comments Post a comment
  1. From a type 2 diabetes standpoint I guess it would be diet and exercise. Most people with metabolic syndrome or type 2 diabetes are handed a meter, a perscription and a diagram of the plate method. Then told to lose weight and exercise 5 days a week, then left to figure out what all that means. I was told to check my blood sugar three times a day, but not what to do with that information. To lose weight, but with the exception of the plate method, no clear plan to do that and to exercise, but nothing about when (like when your blood sugar has gotten a little high, but not when it is lower than 70.) Every type 2 that I know who attains good control has done so by learning about it on the web. I know too many type 2’s who don’t understand that pizza and a full sugar coke isn’t a good meal at any time.

    04/2/14; 12:37 pm
    • Michelle #

      Excellent post, Lisa. They really do leave it to us to figure out, and I believe it’s because they really don’t get it themselves. In other words, It takes one to know one! Having lived with T1 for nearly thirty years, it’s only recently via social media that I’ve gotten good with managing it.

      04/2/14; 8:19 pm
  2. I guess I haven’t really found my “itch” yet… I’m still searching for it. Right now I feel like it is all over the place- some days I want to fundraise, some days I just want to chat or reach out with another PWD, some days it’s exercise… I haven’t quite figured out the main goal of my personal advocacy yet. I jumped on board right after diagnosis 6 months ago because the DOC was where I found the most comfort. I think my biggest frustration is that most people “don’t get it”… so I guess starting my own blog was an easy way to universally try to explain my life with diabetes. I wish it were that easy to crush all of the misconceptions.

    Awareness? Maybe that’s my itch.

    04/2/14; 1:50 pm
  3. Emma #

    I believe my “itch” is awareness and understanding (to a certain extent). I remember when I was first diagnosed-almost 7 years ago, at the end of second grade-I desperately wanted a best friend that had diabetes too. I realize now, that what I really wanted was someone who understood everything I was going through…sure, my parents and the rest of my family are extremely supportive, but they didn’t truly understand.
    Now, my best friend knows a little bit about my disease, life, and all the daily crap I have to deal with. I suppose I could have talked to my doctor or social worker, but its not the same as having someone around your age with diabetes. Sometimes I just need to talk to someone who has a pretty thorough diabetes awareness. At the age of 15, I now have a couple of friends with diabetes…they may not deal with it the same way I do, but they do understand…which is all I can ask for.

    04/2/14; 7:21 pm
  4. My itch is supporting my local JDRF chapter and diabetes camp program through volunteering and fundraising. I also have an itch for connecting with other PWDs both locally and nationwide. I still get so excited when I see a PWD in the wild, even if I don’t usually have the guys to go talk to them. I feel so alone quite often 3 years into this disease and I am always happy to find people who can relate

    04/2/14; 10:55 pm
    • Carl #

      That’s my itch too Craig. I serve on the board of my local JDRF chapter. A great way to be an advocate is supporting JDRF’s advocacy for the Special Diabetes program.

      http://advocacy.jdrf.org/

      05/13/14; 3:36 pm
  5. Kristine V. #

    This is a great topic, really. I have found out after 7 years with T1D that my main scratch has to be two things: lack of understanding and the mental exhaustion that sometimes appears when I feel I can’t do anything right. I feel these two go hand in hand more or less because when I feel burned out by all the diabetes management or lack there of I really need ppl to understand my situation. However, if I feel I have things under control I can ignore the lack of understanding.

    The biggest scratch of these two though is my mental health. After starting wearing a CGM I found myself in a roller coaster of emotions, and I eventually became burned out and had to even take out sick leave from work. Which I’ve never in my life done before. It felt like a defeat, really. And the consequence of feeling defeated by my chronic disease was a whole spectrum of other emotions, mostly negative. However, I have now climbed up the ladder again and I feel on top of things which is the best feeling ever after experiencing a period in life which changed me in so many ways. Hopefully I am better prepared next time (if ever a next time) and I won’t fall down that many steps. I wish that my hospital and diabetes nurse would know more about the emotional aspect of diabetes, and focus more on that. It’s like you said Kerri: “because I feel that mindset can be as important as access.” It’s all in the mindset, I couldn’t agree more!

    If anyone would like to have a chat about the emotions that comes with diabetes, please don’t hesitate to PM me on FB 🙂 Like many other have commented, I get so much out of reading others experiences in the DOC.

    Thanks Kerri for putting a light on this, it’s soo helpful 🙂
    Love from Norway <3

    04/3/14; 2:45 am
    • Kristine S. Vindenes #

      And my name on FB 🙂
      (From Stavanger, Norway)

      04/3/14; 2:52 am
  6. Great post, Kerri. Can I be coy and answer with, “All of them?” or “Whatever your itch is?” It kinda feels like a cop-out answer, but I say that because what I like doing the most is just making sure people know what’s going on, letting them know that Person A is all about FDA advocacy, while Person B is doing a great D-Camp organizing, and Person C is all about emotional and psychosocial connections. My itch: connecting the dots. That’s what I like doing, because I guess I hate it when people want to something or get involved but don’t know how to start doing that. If people have the info and know where to get it, then they can make the best decisions for themselves — whatever that may be. Does that make sense?

    04/3/14; 9:17 am
    • I like connecting the dots. Sounds like poison ivy, which is very itchy. 🙂

      04/3/14; 9:25 am
  7. First, I’d like to answer ” ALL of the Above.” PWDs face a 24/7/365+ routine. I’m not a professional baseball player, but living with T1D is kinda like playing baseball every day of your life. Some days you go 0-for-4 and other days you hit a Walk Off Home Run in the 10th inning. It’s a grind but it’s the team we’re on.

    My two personal itches: 1) Trying to increase awareness for more human clinical trials. We need more participants, we need more research dollars from public and private sources, and we need the FDA to speed up its approval process. 2) Finally, If I’m open about my T1D and advocate for it, do I run the risk of being discriminated in the workplace and hiring decisions.

    Thanks Kerri for asking. Hope your book is selling well!

    04/3/14; 9:58 am
  8. k2 #

    All of the above itches ROCK & this is such a great topic – THANKS for bringing it up!
    I have multiple itches. Emotional support for people living with diabetes is paramount for me – Without emotional support, we end up carrying this huge anchor of Diabetes Guilt around our necks – And sometimes we aren’t even aware that all the D guilt we carry with us is dragging us down.
    Also: Diabetes Media Muck-Ups: I want the media to get diabetes right when they report on diabetes – And will pick up the phone or write an email when I see the media spouting diabetes myths instead of perpetuating diabetes realities.
    And then there’s the Diabetes Online Community: I want every person living with diabetes to find a home in the DOC – It’s life changing and empowering!
    Xoxo!
    Kelly K~

    04/3/14; 12:32 pm
  9. Ed Geary #

    My itch is the apparent indifference our government and others have for the exponential increase in put of pocket cost requires for optimal therapies I.e. CGMs pumps and test strips. I intend to ask every elected official I know to explain why tax credits for life sustaining therapies don’t merit consideration. As you eloquently put it, the tools are useless if they stay in the drawer. The same logic applies to tools too expensive to buy.
    Thank you for your collegiality.
    Ed Geary T1 for forty years

    05/12/14; 7:04 pm

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