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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

  • Stigmas, Empowerment and Reaching All
  • Let’s Talk Stigma
  • The Future is Now.
  • Enough
  • What Doesn’t Make Diabetes Emotional?

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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

The Future is Now

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

Back in the day, the demographics of type 1 diabetes were pretty simple. Kids got it and their parents cared for them. Once they grew up, they tended to drop from the radar screen of society as they went to college, got married, had kids, paid taxes, and thought about retirement.

More and more diabetics are living longer and better lives, reaching that point where retirement is on the horizon, something many of us never thought we’d see. Our parents are now retired and elderly, often with special care requirements of their own. This is nothing unusual for our generation and it’s not like people are really surprised that the baby boomers were going to retire some day. At first, it struck me as odd that I was now caring for the woman who was my caregiver as I grew up… It just didn’t feel ‘right.’

What is surprising is the number of these new caregivers who are suffering from chronic health conditions themselves. Chronic health problems are no walk in the park and adding in caregiving for an elderly parent can certainly add to that load.

Another change is that  type 1 diabetes is no longer considered a children’s disease. People of any age are diagnosed and at an increasing rate.

I know that I didn’t really expose my own children with how to manage my condition, even though I’ve had it for their entire lives. I would imagine that most people would tend to take the same approach to not burden or worry their children and for people diagnosed after their own kids have moved out, there would probably be even less exposure.

At some point, our children will become our caregivers. How do we prepare them for that?

The first thought might be that it would be like a new diagnosis for a child, where the caregiver (parent) learns through a trial by fire, guiding the child through learning as well. But the reality is that these adult diabetes are not children nor are they new to their condition. We will know more than our caretakers, again reversing the traditional roles of caregiver calling the shots, although at some point it may come to that. I know that I’m old and pretty set in my ways so I can imagine a few knock-down, drag-outs as my daughter is much the same way, minus the ‘old’ part. I really don’t want to subject her, or my son, to that.

As I said earlier, it feels odd at first being a caregiver for someone who used to do the same for you. I imagine that it will feel even odder switching roles yet again.

I’m a big fan of the Friend for Life Conference (FFL) held every summer in Orlando, if you can, you should go. A friend of mine with type 1 tweeted that he had registered his non-diabetic son for FFL, so his son could take part at the same time he did. That tweet reminded me of sessions I attended in the past where they have sessions on caregiving for parents, loved ones, and  grandparents and they all talk about how to take care of yourself while caring for a diabetic child.  Soon we’re going to need these session for our non-diabetic children as they move into the role of caregiver and we swing into the role of cared-for, some of this will be our second time through.

While we don’t wish to see our parents needing our aid or us needing the aid of our children, it will happen.  We’re already seeing people with chronic health conditions of their own taking on a caregiving role for our parents. And as more and more of the type 1 community ages long past what everyone thought, more and more of our children will be caring for us, many having their own health issues.

This future is here now.

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

Enough

Enough is enough.  I’ve reached ‘enough’

I had a good day.

I can’t really remember the last one of those I had, but I can remember this one.

And that? That is enough.

What Doesn't Make Diabetes Emotional?

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

Some days it seems like everything about diabetes triggers something: frustration, anger, WTF, the despising of device alarms, the inability to not eat everything, cursing and a love/hate relationship with carbs.  You know, that list could go on for a while so it might be easier to ask what doesn’t make diabetes an emotional issue at times. Hmmm…

I know! My kids’ sporting events! Well, there was those times I went really low while coaching a game for my son’s baseball team.

Sleeping?  No, that’s my Dexcom’s favorite time to alarm.

Let’s see… how about taking a drive?  I enjoy driving, it’s relaxing. Which, it seems, is my Dexcom’s second favorite time to beep.

How about the shower? A nice long hot shower… ahhh… as long as I carefully wash around all the spots where diabetes related devices attach to my body.

A movie?  I love going to movies and all I have to remember is that a large popcorn is about 125 carbs. Oh and remember to dose before I go in.

Reading? Sounds safe enough as long as the words don’t start jumping around on the page because I am not only low but hypo-unaware.

Ok, this is getting ridiculous. Something simple, that’s what I need.

Getting up in the morning and get ready for work. Sounds easy enough. Get up, check numbers, suspend and disconnect devices, shower around all the places where devices were attached, re-attach devices while getting dressed to make sure tubing isn’t looped around belt and clothes is properly tucked, check my feet while putting shoes and socks on, make sure extra pumping and testing supplies are in backpack and go. Oh and restart my insulin pump once I get to the office because I forgot to when I re-attached it. Luckily it was only off for an hour, maybe two, but now I am ready to start my day!

As you can probably tell by now, diabetes is a very intrusive disease.

Intrusion.

That single word is why it can become an emotional issue at times for us. It’s like a distant relative that has come to visit and complains about your cooking, guest room carpeting, selection of TV channels and how you fold your bathroom towels. And they just will not leave.

And my pump just alarmed that I need to change my infusion site…

It’s the 5th Annual Diabetes Blog Week and this entry is for the “What Brings Me Down” topic.  To learn more about Diabetes Blog Week, click on through

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