Amy Tenderich is the engine behind DiabetesMine, “a gold mine of straight talk and encouragement for people living with diabetes.”
Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions about how she came to be such a kick-ass e-patient.
1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient? Is there another term you’d prefer?
I like all the e’s you mention – although “equipped” really depends on how good our health insurance is. Many PWDs (politically correct term for people with diabetes) have a real struggle to get coverage for insulin pumps, supplies, and testing devices – in particular new continuous glucose monitors, which can be a godsend to patients with volatile blood sugars.
Meanwhile, the Internet has given us patients a chance to come together to share experiences, practical tips, and our feelings. And it’s also given us a collective voice we never had before. With free access to all sorts of medical information, patients like me can drive our own care for the first time in history, by asking the right questions and demanding the latest and greatest treatments.
2) Were you always this engaged in your health care, or did your diabetes diagnosis trigger it?
Nope, I was never very engaged at all – except when I had that fight with my health insurance over paying the bills for my second C-section (I’ve had three). But my diagnosis with Type 1 diabetes changed everything. It came as quite a shock, and I realized that it was up to me to be my own best advocate and learn how to navigate the American healthcare system. I’m still learning every day, because it’s incredibly complicated.
3) You have a background in journalism and communications – how have you applied those skills & experiences to your current work? Was there anything else in your background that may have prepared you for your new role?
My husband says being a blogger is simply “my calling.” I’m a trained journalist with a master’s degree in communication studies, so that helps. But the beauty of the blog is that it’s so personal and free-wheeling. If I feel like posting a joke or a poem, I can do that anytime. Meanwhile I take my reporting role quite seriously, investigating new products and advancements in diabetes care, and interviewing all sorts of celebrities and luminaries in the field.
What else helps?
Type A personality.
Slightly neurotic.
Quirky sense of humor.
Classic over-achiever.
All of these traits are quite conducive to dealing with Type 1 diabetes, which is a very high-self-maintenance disease.
I’ve been offline for the weekend, visiting family – bad timing on this post! :) I’ll be online again Monday night – see you then.
> What else helps?
>
> Type A personality.
> Slightly neurotic.
> Quirky sense of humor.
> Classic over-achiever.
Um, who, me? What were we talking about?
Seriously, though: you mention “with free access to medical information…” More than once this blog has encountered doctors who warn about the supposed dangers of our doing our own research, and writers here have posted potent evidence that that’s wrong. But there’s nothing as potent as a first-hand counter-example. Can you cite an instance where self-Googling (so to speak) saved your butt, or that of someone you know, because of something a provider DIDN’T know yet?
Caution – I’m not griping about doctors falling short – this blog’s tagline and white paper refer to the massive workload and information overload doctors face today. This question is about the value of participatory medicine.
Can you cite some examples?
Yeah, that would include gluten intolerance — which turned out to be the cause of 6mos of horrible hives I’d been experiencing. I only learned about the connection with T1 diabetes from other patients.
For a few more examples, see this story:
http://www.newsweek.com/id/104413
Best,
AT
Dave,
It’s not only true with Google!
We have 1 list on ACOR where we have multiple documented cases of people whose life was literally saved by the advice they received from other list members. Long term survivors of cancer have had multiple instances of cardiac failure, resulting from the very long term effect of the treatment they received as a child, 30 to 40 years ago. Most of their doctors are completely unaware and completely untrained in dealing with this kind of delayed effects and therefore would never tell their patients to rush to the ER. But listmembers who had experienced the same thing knew instantly what was happening and told the posters reporting their problem that they were dealing with a clearly life-threatening cardiac effect requiring an urgent visit to the ER and hospitalization.
When we talk about e-patients, equipped, enabled, empowered and engaged in their health and health care decisions, we MEAN it.
I get alot of info from web sites, I see you on diabetes connect. and I use doctorslounge, obgyn.net, & yahoo groups, secret suffering to discuss issues.
I’ve learned so much because several times, the specialist doctors can’t see you for weeks, so how do I get help??
I should use my family physician more, but I’m a little afraid that Insurance will drop me if I use them too much. & now the premiums went so high my deductible is really high, I’m trying to get everything done now before the new policy takes effect.