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Disclosure

I am not a medical professional, I have never played one on TV, nor did I stay at a Holiday Inn Express last night.

Posts on this website simply convey the experiences of the author and are not intended to be taken as medical advice.

Talk about any changes you may be considering with your own medical team before changing your treatment regimen.

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Recent Posts

  • Are Patients a Distraction at Conferences?
  • Means and Ends
  • Y’all Want To Attend MedX? Take a Gander!
  • Stigmas, Empowerment and Reaching All
  • Let’s Talk Stigma

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Are Patients a Distraction at Conferences?

** Next week, I will be attending the Medicine X conference as an ePatient Delegate Scholar. Medx is one of the most patient focused conferences on the planet with attendees from all portions of the healthcare spectrum and the world. I thought this might be a good time to re-post this from about a year ago

© 2013, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Recently, I was bemoaning the fact that while the first conference specifically addressing diabetes and depression was a good start, there really wasn’t a significant patient presence (not to mention we only learned of it about 4 days before the event). Lot’s of experienced professionals in the field, but startling few people who had actually walked-the-walk with significant depression for years, decades even.

While this format will surely offer a lot of information from the professionals viewpoint, it seems that it would be a bit sterile, without true context unless attendees could actually hear the effects of depression on patients.

A couple of comments caught me a bit off guard, these come from a single HCP and I’m trying to explore how pervasive this opinion is.

One included a comment that said

At events like these, patients are a distraction when HCPs want data first, implications second. It’s for the best, trust me.

Data without implications, without context and effects? Without any of those things, why is that data valuable at all? The implications, the context is why the conference was being held in the first place. Data is only part of what constitutes knowledge, you need context to make it relevant to anything.

I replied that I felt that comment was very paternalistic and their reply said to remember that they had feelings too. Replying that I also had feelings, the next reply gave an explanation that ended with:

The patients I’ve seen present have been ended up just yelling at doctors.

I agree that the stage should not be used to just yell, but I have to wonder if that was actually what happened or if the reason people are willing to get up there and present is being totally overlooked/ignored/disregarded/misunderstood.

Patients tell their stories and advocate so that whatever happened to them won’t happen to anyone else.

Stories are very powerful, which why they’ve been around since we climbed down from the trees. Stories put a face on an issue, make it real. It’s no longer some stat or incident report, it now has happened to a person.

Now, that’s pretty much all ePatient Advocacy 101. What really disturbed me a couple of days later was the thought that HCPs attending these events may have a ‘cultural’ bias against patients presenting, viewing them as simply a bitchfest in front of an audience.

Does that preconception exist in the medical community? Is that sentiment common among HCPs? Are these stories of things that patients, that people have gone through, endured, survived simply viewed as “woe is me, look at what these bad people did to me?” How many professionals actually look at these stories as something to learn from?

If that doesn’t happen, if that culture shift does not take place then it will not matter how participative patients are. The marginalization of patients will continue.

In effect, patients will simply be a side-show.

** Also, check out the Global Access Program at Medicine X Conference 2014, this program will allow you to virtually attend the conference wherever you can get an internet connection at no cost (registration required)

© 2013, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Means and Ends

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

I recently attend the annual Friends for Life Conference in Orlando. This was my 4th year and I usually really enjoy it and come back recharged.  While I enjoyed chatting with folks and catching up and needed the few sessions I did attend, I felt unusually disconnected this year. I didn’t get a recharge or feel more energetic when I got home.

I’ve become a pretty big believer in Spoon Theory as it relates to depression and burnout, it is the best explanation that I’ve seen of how we have to decide what we are going to expend ourselves on.  For most of this year, I’ve been faced with a rapidly dwindling supply of spoons.

What this means is that after I make sure that mom is cared for, after I get work taken care of, after I get my diabetes taken car … ah crap. Ran out of spoons. The result of this is quite predictable. Eventually all this crap flows up hill and the frail infrastructure I call ‘me’ starts to devolve.

My family has helped by staying so I could take that trip to Florida, making sure she got to appointments. But it was the monitor, the one I have on 24×7 so that I can hear if she calls out, that seems to drain me the most. It seems it’s something that I can’t escape, even when I sleep.  Sleep hasn’t been very well for a while, years actually. I even went as far as taking the clock out of my bedroom so then I wouldn’t watch it and worry about how tired I’d be when the alarm went off. I recommend this by the way, removing that LED reminder was one of the smarter things I’ve done recently.

All the usual signs of depression stopped by to stay a while. You know, the loss of interest, withdrawal, bad coping skills. I’ve spoken with Morpheus off and on over the summer and while she didn’t seem surprised about my lack of recharge, I think I did surprise her about a couple of things that were going on. As a matter of fact, I don’t believe that I had ever really seen her look truly concerned about me like she did at one of our little chats.

I kept pushing myself trying to get out of bed each morning without using 3 spoons (one to decide to get up, one to actually get feet on floor, and another one not to go back to bed).

And then? Well then, my body finally said “Enough of this”.  I spent the next 5 days sleeping anywhere from 12 to 18 hours a day. And it was a good sleep, rest that I obviously really needed.

One evening during that period, I took mom grocery shopping. She had some family visiting from California and was excited to see them. She’s really been struggling with some health issues lately and had finally gotten a clean bill of health from the doctor. So there was some excitement and a little pep in her step as we went down the shopping aisle. Mom believes that she ‘has’ to fix something if people you only see once a year are coming to visit, no potato salad from the deli counter! So made from scratch it was.

As I watched her pick out her groceries, even as I was about ready to drop from exhaustion, I smiled as it occurred to me that I had made a choice. And I was grateful that excitement was still part of her life partly because of that choice.

Yes, there have been costs to that choice for a reason. But sometimes, just sometimes, the ends do justify the means.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Y'all Want To Attend MedX? Take a Gander!

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

I’ll be attending Medicine X this year as an ePatient Scholar Delegate and I’m really looking forward to it. But many other people are unable to physically attend the conference and, once again this year, the organizers are doing something about that.  It’s virtual, y’all!

awm1z Please check out the Global Access Program at Medicine X Conference 2014, this program will allow you to virtually attend the conference wherever you can get an internet connection! There is no cost to you, simply register at the provided link and prepare to see some of the most interesting people and discussions about the latest in patient engagement, technology and healthcare.

The world of medicine is changing, I think we all know that. Patients, caregivers, researchers are able to connect in ways undreamed of even ten years ago. People who used to feel so isolated are now able to connect with others that “get it”, to support and learn from each other. Patients have the biggest stake in healthcare, but until very recently they have only been passengers. Progress is slow, but conversations like the ones that will be happening at MedX this September will be key in the upcoming revolution age of patient engagement.

There is a lot of buzz around patient engagement, and much of it is exactly that. Buzz. An epatient is engaged in their healthcare, educated about their condition, equipped with the skills needed to manage their condition, empowered to lead their health-care team and enabled to make their own decisions and have them respected.

 

That is really quite different from the way we grew up with medicine, so how did this suddenly become possible? A couple of things I think.  First, technology, in particular, the internet. While our doctors were the keepers of all the knowledge in days past, anyone can now educate themselves in a short time. We can now find entire communities of people living with our condition where fellow patients, experts in their condition and care, are more than willing share their experiences with anyone.

The second thing that really enabled this change were the patients and caregivers willing and able to point out the problems with our system and come together to find solutions. Not only sharing experiences, but using those experiences to learn what we can do to make things better for anyone who is struggling with a new diagnosis, old diagnosis, treatment concerns and questions, how to deal with insurance… The list goes on, but it all boils down to the fact that our healthcare is a complex system and navigating it is hard but there is nothing that says we have to navigate alone.

MedX connects both those points, the technology which is evolving faster than we can keep up with and the patients, caregivers and providers, the people, who actually make things happen. If possible, please consider attending from the comfort of your own laptop, tablet, phone… you get the idea.

As for myself, I will be participating in three panel discussions and one MedX special event on health-care innovation:

I hope that many of you will attend virtually, this is an incredible opportunity to take part in one of the most patient centric and diverse medical conventions on the planet. I think it will be worth your time.

** Disclaimer:  I was awarded a partial scholarship to attend Medicine X 2014. MedX is not compensating me for any social media posts I make and the words, ideas, and takeaways are my own.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Stigmas, Empowerment and Reaching All

© 2012, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

** There’s a lot of talk going on now about #Dstigma and this talk needs to happen. Along those lines I am reposting a blog that originally appeared on Strangely Diabetic on May 29, 2012

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, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Let's Talk Stigma

© 2012, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

** There’s a lot of talk going on now about #Dstigma and this talk needs to happen. Along those lines I am reposting a blog that originally appeared on Strangely Diabetic on May 22, 2012

Since I have written so heavily about my battle with depression and going through therapy for the last 6 months or so, you’d think I’d have plenty to say about mental health during Mental Health Awareness Month .

I do and it all revolves around a single word:  Stigma

What a word.  I was going to add the definition here, but then I noticed the synonyms listed

disgrace
reproach
blemish
blame
brand
stain
taint

Now that list seems to cover it so much better than a somewhat sterile dictionary definition.

I’m disgraced, blemished, blamed, stained and tainted for having a mental illness.  Hell, I’m often all those because I have diabetes.  People with invisible illnesses just don’t “look sick enough” to have special needs or requirements.

How many of you felt that way or thought that about someone else?  I know I have.  That feeling, it goes through our minds and we have no idea where it comes from.

The stereotypes about various things in our societies often form the basis for what we “know” about some occurrence or some condition.

We have to deal with those stereotypes daily.  “If you’d quit feeling so sorry for yourself, you’d see that this depression crap is just you needing to man up”  or “You gave yourself diabetes by living a bad lifestyle, so too bad – shut up and just deal with it”.

It gets really fun when you keep hearing that from the media or in the doctor’s office or even from family members. Their perception of your reality has been formed by the stereotypes.

It’s hard at times trying to advocate for conditions with stigmas associated with them.  It’s hard at times making sure your “stigmatized” conditions are being treated properly. And it’s hard to admit to others that you are affected by one… sometimes you can’t even admit it to yourself.

All because of a little word: Stigma.  How did these five letters get so much power over us? Why do we let them have such power?

And if we are going to discuss these things we often have to be engaged, empowered, and educated in doing it.  We have to strip the power we give that word away.  In short, we have to own our conditions no matter whose “fault” they are.  If we don’t, then the stereotypes persist and stigmas prevail.

That’s easy to say and oh so hard to do.  It’s a lot of work dealing with things that we just may not want to deal with.  My blog is about diabetes and depression.  Statistics aside, it is something that I and many others deal with.  There have been a lot of blog entries recently about depression and diabetes, I’m proud of the people who have posted them.  If you’ve merely read, I’m proud of you too.  It’s not an easy topic to think about or deal with.

An e-patient brings a lot of things to the table and when working with a doctor willing to embrace that, the outcomes can be phenomenal.  A diabetic, in particular a Type 1, is almost an e-patient by the simple fact of the diagnosis.

Your doctor can not successfully help you set up a care plan without the knowledge that you bring with you.  I’m not talking about meter readings and carb ratios, I’m talking about the “intangibles”.  The things that only you may know because it happens to you.  It doesn’t happen to the doctor.  You have the real-life, real-world experience needed to complete the plan best suited for your needs.  You don’t need some cookie-cutter plan, you need one tailored to your lifestyle, ethos and you have to be an active part of creating that plan.

If you thought there were stigmas associated with diabetes, throw depression, a mental illness, into the mix. Advocacy for it can be risky, I may have put so much out there on the web that I may never find another job if I needed to.

Again you have to be involved.  Yes this medication works but the side effects are brutal. No, this one doesn’t work at all.   Talk therapy is even more participative.  It’s a lot of hard, uncomfortable work talking about things that you don’t want to talk about. Things that need to change.  Change, that’s a scary word because it brings a sense of the unknown.

So for all those who advocate for yourself and for others, those people who are willing to put it out there, I salute you.  You have cut a path and shown me that I can be an advocate as well, shown me that my story, my voice is important.  That all of our voices are important for those who come behind us and that we are, hopefully, laying a foundation for that next generation of advocates to build upon.

Stigma.  Hmmm… it just doesn’t seem quite so powerful now.

© 2012, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com