Online diabetes peer-support… now a resource to guide you

Something’s new in the world of diabetes online social media and it isn’t a new site. Rather, it’s a simple, engaging 3-page guide to steer you to excellent and trustworthy diabetes web sites. Sites where you’ll find a wealth of both general and very specific information, and, be able to connect with others living with diabetes.

I’m impressed by the collaboration between medical professionals and diabetes advocates. Together they did the hard work to make the wealth of diabetes information and support found online more attainable and useful to both people with diabetes and diabetes health providers alike.

Knowing this started as a conversation some years ago, I’m also inspired by how mountains can move when people decide to move them.

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This effort was led by former President of the American Association of Diabetes Educators, Hope Warshaw,  and founder of DiabetesDaily, David Edelman, who had the help of many diabetes advocates. The guide points you to vetted diabetes peer support communities, blogs, news and magazine sites, organizations, government resources and advocacy organizations.

True, this community of patient resources and patient compassion has existed on the internet for some time. What’s different is now you have a guide where and how to find them.

I cannot stress enough how taking advantage of the information and emotional support online, from people living through what you’re living through, can change your every day life.

ALERT: Learning, and hooking in online, does not replace your health care providers. This rich world adds to your knowledge and support by offering communities where you may make new acquaintances, feel less alone or inspired to get involved, and you can ask questions and get real, lived advice.

As someone, myself, in this online diabetes community, I have made stellar friends and acquaintances, I constantly learn what’s new and what’s coming, and I often get answers to questions I would never think to ask my doctor. And I’m healthier, and more engaged in my self-management, for it.

Warshaw and Edelman share a letter why this effort began and what it truly offers – not just to people living with diabetes but those who treat them and care for them.

As a diabetes nurse, educator, dietitian or physician, as a community health worker, social worker or psychologist who works with people who have diabetes, you will benefit from seeing what’s being exchanged online between people with diabetes. You’ll get deeper insights what diabetes is like to live with and you’ll be able to give your patients and clients a resource that may help them get more motivated, committed and engaged in their own care.

Susannah Fox, healthcare and information technology researcher and former Chief Technology Officer of the U.S. Department of Health and Human Services, does a great job outlining the benefits of online peer support in this video.

 

Speaking at Stanford Medx in April, plus HuffPost #5 – The Engines of Chronic Care

 

Screen Shot 2018-02-22 at 4.32.33 PM.pngApril 28-30 I’ll be at Stanford Medicine X presenting the Flourishing Treatment Approach (FTA) I’ve been sharing the FTA with providers around the world these past three years.

The conference is new for me, but seems perfectly aligned with what I’ve been doing. Stanford Medx claims the territory – the intersection between practitioner and patient. This April’s theme: create disruption in medical education through partnership with patients and interprofessional collaboration. Indeed!

My disruption, the FTA, addresses how most HCPs world with people who have chronic illness. Their treatment is based on machine-thinking, not what works for humans. I don’t blame anyone, it’s what they’ve learned.

Practitioners are trained almost exclusively in delivering acute care where machine-values – precision, accuracy, perfection, cause and effect – are worth striving for. But for treating people with chronic conditions we need values that speak to human striving:  relationship, trust, safety, strengths, connection inspiration. We need not scalpels and band aids but trust, partnership, dialogue and meeting people where they are. These qualities are what move more people to invest in their daily care.

So today, I share with you my fifth HuffPost article in my line up of top 10: The Engines of Chronic Care: Hardware and Heartware. Below a brief excerpt:

“We know when providers express empathy their, and their patients’, outcomes improve. Peer-mentoring also improves patients’ management and clinical outcomes, and, with the lowest-tech device imaginable — another human being to listen, engage and connect with.

So why is heartware overlooked?…”

Full article here

 

 

#4 HuffPost: Let’s Stop Lying About Diabetes

 

control is an illusion.pngIn the past year how we speak about diabetes and the language we use with patients, has finally come to light. Words like “diabetic,” “test,” “adherence,” and “compliance,” are slowly being understood to be derogatory, limiting, belittling, prejudicial and downright mean. And, my all-time favorite, “control,” is an out and out lie.

Why? Read the article I wrote in 2014, “Let’s Stop Lying About Diabetes.” Nothing has changed.

Every day people die of diabetes – even those you expect wouldn’t

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Sometimes I wonder what people would think if they knew i have my share of low blood sugars and high blood sugars. I can misjudge the carbohydrates in what I’m eating, I’m frequently surprised when my blood sugar is either lower or higher than I expect and at times I can’t remember if I took my shot before a meal. Me, a smart, educated patient. Me, a supposed role model.

So I was surprised and so saddened to read that a young man, who is part of the International Diabetes Federation patient group, the Blue Circle Voices, died a few days ago at age 32 due to problems with his diabetes. I do not know what those problems were. I only know his name, Onesmus Kahiu, that he lived in Kenya and that he had founded an organization called, Smile Again Diabetes Children. Onesmus was a health coach who helped children get access to medical necessities, education to manage their diabetes and love themselves. The photo above is from his LinkedIn page.

You get it, don’t you? This young man, who was instilling in children with diabetes that they should smile, died of his disease. This young man who was changing things in his country, a role model for others, who cared and wanted to uplift others.

We should never assume anyone has type 1 diabetes down. We should never assume this disease cannot get any of us. But while we’re here, we can gift those who devote their lives to make the world a better place for others with our love and respect.

I didn’t know you Onesmus, but I am sad you are gone.

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