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Stigmas, Empowerment and Reaching All

Last time I blogged about stigmas and how powerful they can be.

I’d like to say that being empowered is possible and may even be more important when your condition does involve stigmas.

Often we hear about e-patients, but what is an e-patient?  There are a number of ‘e’ words involved: engaged, educated, enabled, empowered.  I hope you took notice that ‘electronic’ was not one of those words.

If you happen to read through the e-Patients: How They Can Help Us Heal Healthcare (PDF) white paper, you’ll notice several detailed examples where the patient was not satisfied with simply accepting what their HCP had told them.  They became educated about their condition.  They became engaged in their care. They became empowered as patients because they were doing much, much more for themselves that just following the treatment regimen laid out for them.  They enabled themselves to find the right treatment for them, to find the best outcome for them.

That “for them” portion of that description is so important.  As diabetics, we know that this is not a “cookie-cutter” condition, where one treatment fits all.  Many other conditions face that same challenge.  As e-patients, that is something that we all want:  better treatments and, most importantly, better outcomes for everyone who needs medical care no matter what their particular condition is.

Ok, so where do stigmas fit in, Scott?  Well, when they are in play, they are smack-dab in the way.  And often that roadblock comes from the  patient themselves and we may not realize that we are even doing it to ourselves.  Patients are affected by stigmas just like anyone else in the world.  They influence our perceptions of things and, too often, we let our perceptions, our preconceived notions become our reality.

In the world of diabetes it all seems to revolve around blame in the short-term and complications in the long-term.   We often blame ourselves, parents wonder what they should have done differently, doctors can say we’re not “compliant”.  And complications?  My god, how hard is it to stay “compliant” when complications may, or may not, appear for years, decades or even at all?

When talking mental health, the stigmas associated with that seem to be so much more pervasive and intrusive.  They intrude when we want to get help, when we need to admit that we need it, when we think that we’d like to share our experiences with others.  Others who face the same stigmas and fears, but, for whatever reason, they can’t see a way to maintain their self-respect, dignity or the respect of others.  That is what stigma does.  It takes a single point of what makes up a person and bases the perception of the whole person on that one alleged “shortcoming”.

Now that we are able to glean so much from the shared wisdom of other patients in the world, some of that fear and unknown can be set aside.  The stigma remains though and will remain until enough voices drown it out with fact. Facts, not assumptions.

At least for us.

But there are many who are not afforded this basic opportunity to become engaged in their own care.  Be it that they don’t have the resources to avail themselves of the collective wisdom of others or perhaps their HCP’s simply refuse to listen to what they know.  Perhaps they are “locked” into a certain position by insurance or economic situations.  And honestly, not everyone is going to want or need to be an e-patient.

And how much of their wisdom is the rest of the world missing because these individuals are not able to participate? Is their voice any less important than ours?

Currently, this definitely seems like a “trickle down” situation.  People may have been living with no real access to healthcare or perhaps only access to whatever information their doctor gives them that being an “e-patient” isn’t something that even crosses their mind.

In the diabetes on-line community, we often wonder how to reach those who need us, but don’t know we are here.  This is exactly the same issue.  How do we take the on-line and put it into practice off-line.  How can we help people who don’t know that we want to help or even know that their healthcare could be managed in a different way?  A way where their own experiences, needs and beliefs could play a bigger role in getting the best health care for them.

I’d like to think that at sometime in the future, the want or need to be an e-patient will be replaced with “is an e-patient” because that is what the healthcare system simply does, it is the premise that the entire system is based on.  To obtain the best outcomes, the patient’s experiences and responsibilities are just as important, if not more so, than those of any medical professional involved in their care.

Well… a guy can dream can’t he?

© 2012 Scott Strange, Strangely Diabetic and

  • Mike Hoskins

    Great post, Scott. I agree that eventually the e-patient concept will be something so ingrained and based in our healthcare system that it’ll be odd to not see it. We aren’t there, and so many docs are still seemingly afraid of the idea. But hopefully we get there sooner, rather than later.

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