NP thoughts on the DOC

In an attempt to connect individuals with type 1 diabetes, a colleague and I developed a social networking event in Salt Lake City, the Diabetes Mixer. During the development of the Diabetes Mixer, I learned about the diabetes online community (DOC,) tudiabetes.org in particular. I was amazed. The DOC is full of information, support, humor, art, and community. How was it that I have been a diabetes specialty nurse practitioner for the past 5 years and had not known about the DOC?

After seeing the DOC, and the wonderful things people with diabetes gleaned from it, I realized that I need to be cognizant about knowing when I’m not enough as a nurse practitioner (NP) specializing in diabetes care. I’m not enough when I can’t provide the day to day social support for my patient. I’m not enough when I cannot provide true empathy. And I’m not enough when I’m not aware of some of the tricks related to diabetes care based on personal experience. While I believe I take excellent care of my patients, providing sympathy, reading up on the latest and greatest, understanding carb counting by actually doing it, and personally test driving the latest technology isn’t always enough, my patients deserve more. This is why I have started to recommend the DOC in my practice. At times, I have even asked my patients to do homework on the DOC, using specific search terms to address their needs and concerns.

While some might cringe at the thought of the use of social media in health care, I have personally seen how helpful it can be. I have had patients tell me how interacting with others on the DOC have helped them in one way or another. For some patients, the DOC has helped them decide which insulin pump brand they wanted to order or troubleshoot their continuous glucose monitoring system. For others, the DOC has helped individuals stay motivated in managing diabetes resulting in more frequent glucose checks, diet and exercise. Most of all, I believe the DOC has helped patients to feel understood. Belonging to a community where you can relate to others is essential, whether you have diabetes or not.

Am I okay knowing that sometimes I just won’t be enough for my patients? Sure! Because I know the DOC exists and will embrace my patients wholeheartedly, providing what I cannot. As long as my patients are able to address their diabetes-related needs and have optimal health, the percentage mix of me versus the DOC is inconsequential (of course I still want to be involved). Ultimately, a happy healthy patient results in a happy NP!

People with Diabetes: Do you currently belong to a DOC? How has the DOC helped you?

Health Care Providers: Do you recognize when you aren’t enough for your patients? If so, what are you doing about it?

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16 thoughts on “NP thoughts on the DOC

  1. I hate that your attitude about connecting with others online is rare. I wish more medical professionals would lose the god-complex and understand that sometimes their expensive degrees and medical knowledge can’t substitute for real world experience of living with diabetes.

    • Mike, I think health care providers are slow to warm up, but will eventually need to be accepting about what is really going on in online health communities and embrace it. I hope more e-patients will have the opportunity to present their experiences to health care providers, like at the Medicine 2.0 conference. I know Amy Tendrich from Diabetes Mine is coming out to Utah to talk to the diabetes educators about the DOC in a couple of weeks. The more we can bring e-patients and health care providers together, on the same page, the better!

  2. I have been blogging in the D-OC for over 5 years. I love my health care team, but the emotional aspect of living 24/7 with this chronic illness is something that is too often overlooked by healthcare professionals. I’m glad that you have realized this as a healthcare professional and are honest enough to admit that you might not be enough for your patients. I used to teach school. I had something I always told my second graders: It’s not about knowing all the answers, it’s about being able to find them when you need them.
    That’s what I feel the D-OC is about: finding support in the often overwhelming weight of living with diabetes.
    Thank you for this post!

  3. P.S. Check out some of the recent blog posts about Simonpalooza. Connecting online isn’t as rare as you may think. And some of us have had life changing experiences as a direct result of the D-OC

    • Cara,
      Simonpalooza looks like it was amazing! A colleague and I put on a Diabetes Mixer in Salt Lake City biannually to connect young adults with type 1. Please take a look at the video footage from the first Diabetes Mixer here in April where Mike Lawson, PWD, from Phoenix, AZ came out to guest speak. We just had the second event on October 10th featuring Ginger Vieira from Burlington, VT. Video and photos from that event to come soon!

  4. I love that you’ve ventured into the DOC and do hope that more in the medical community do warm up to it. The support network does so much in helping us cope with this condition, no matter the length of time that we’ve been living with diabetes. There are so many things we learn and are able to grow from, and this is truly an irreplaceable resources that really does impact one’s health. My A1C dropped as a specific result of my interacting with friends in the DOC, and staying accountable, and I can’t wait to see the medical community realize the potential of this community and more commonly recommend and tap into it.

    • Hi Mike,
      I actually got rejected my first time signing up for one of the DOCs! Somehow I was able to work my way in, and so glad I did. Congrats on getting your A1C down! It’s inspiring to see how much individuals on the DOC are doing for each other, its a great community to be apart of.

      I’m really interested in trying to get health care providers to see the DOC as I see it. If you know anybody in one of the DOCs that lives in Utah, who is also interested in talking to health care providers about their experience with the DOC, please let me know. I’m trying to organize a forum for that. We have to unite to inspire change.

  5. Hi Michelle,

    Thank you for writing about this, and for recognizing the value the DOC offers to those of us who need it. The daily, heck, even hourly, support it offers is priceless.

    We all need our healthcare professionals. You all do marvelous work for us, and help us make sense out of this complicated thing we live with. We also need the support that only our peers can offer.

    I’m glad to see that you are not afraid of it, as so many are. It’s as important to us as our insulin.

      • The topic has never come up in our short appointments. I feel that the communication with my current provider is just so-so, which is bad. I take partial responsibility for that in not pushing for more.

  6. I have been a T1 for 53 years and it is amazing what the DOC has accomplished. When I was diagnosed, T1 wasn’t nearly as common as it is today. What the DOC does for people is just fabulous

  7. I’m so happy to see someone in the healthcare field embracing the DOC! I was originally misdiagnosed with Type II Diabetes and my Dr. often told me to “stop looking online. . you’re going to get misinformation.” Little did he know, it was the DOC that helped me realize I had been misdiagnosed. A member also helped me find my Endo (whom I ADORE) and they have regularly helped me troubleshoot puzzling numbers, when my healthcare professionals were not available. I can truly say, the DOC saved my life!
    Besides that, the emotional and social support they lend has been amazing! There’s nothing like a D-meetup at a restaurant. It’s the one time I can feel “normal” as my husband is the ONLY one not pulling a pump and lancet out on the table. The DOC is supportive, loving and always there, day or night. Welcome to the club!

    • Hi there, thank you for your comment. I was shocked and moved to see how many people credit the DOC to saving or significantly improving their life in some way. I agree about the meet-ups! Have you heard about the Diabetes Mixer? It’s a social event for individuals with type 1. We just had our 2nd event a couple of weeks ago. If you are ever in Utah you should come to one!

    • Alan,
      Amazing story! Thank you so much for sharing. The DOC truly is amazing, what a vital connection you and your family have made because of it. I just checked out your blog. On spreading the word, have you heard of rareshare.org? Its an online community for rare conditions.
      My best to you and your family! Michelle

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