Tag Archives: diabetes and public perception

Can We Replace “Reverse” with “Remission”? and Other Thoughts

Courtesy of Graur Razvan Ionut

 

People don’t mean any harm when they say they reversed their diabetes.  They say it because that’s what the majority of the medical community uses and what they know to be true.  It’s not widespread that one can’t reverse diabetes.  In fact I’m looking for a doctor that will explain this to me.  So far, all the ones I talk to either say, “Yes, it can be reversed” or “I don’t know…”  It would be nice if we could use the word “remission” so that we had a way to describe those who reverse their symptoms and find themselves off of meds and with normal blood sugars.  We use this term in cancer patients, why not diabetes?

For some people, saying that they have reversed their diabetes is the logical way to put it.  They used to have high blood sugars but they changed the way they live and as far as they see it, they don’t have diabetes anymore.  I used to have a problem with my kidneys.  Test results would come back abnormal.  Now, test results come back normal and so I say I “reversed” my kidney damage (that’s what my doctor says, too).  That’s just the simple way that I see it.  And yet, I am aware that if I don’t manage my blood sugars, it’s only a matter of time before I see damage again.  Society has taken notice of how important lifestyle habits are and they assume it makes sense to say that if you live a certain way, you can keep diabetes away.  They just don’t know the details of the disease and good luck to you trying to teach them all the details.  People aren’t going to want all the details unless they feel diabetes really pertains to them.  If you try to get me to hear all the details about your favorite video game or your pet dog, I’m pretty sure I won’t remember them later.

I don’t understand when people say that diabetes is only cured if one can eat and exercise like a non-diabetic and have perfect blood sugars. The way I understand it, If you abuse the body, you run the risk of having serious problems. Metabolic syndrome, type 2 diabetes, thyroid malfunctions…it goes on and on. People literally want to be able to eat the standard American diet and be well?  That’s simply not possible-at least not for long.  Those who argue that some people never get type 2 from this diet aren’t thinking big enough. This diet hurts everyone eventually. Maybe their genes offer some protection, maybe a lot! But eventually, the diet that so many eat in the US is very harmful and unfortunately, for an increasing number of people, it only takes a little of it to cause a problem.  And what if there were to be a cure for type 2?  People would want to eat as before and I doubt their bodies would hold up.

To me, the biggest problem is the fact that the media isn’t able to report on diabetes in a more multi-faceted and in-depth way.  If they did and people heard on CNN that type 2 varied from person to person, that the severity level could be minor to major and therefore some people could eat this and others found it didn’t work and some could be off meds and others could not, that some found success through just adding more exercise and others exercising all day didn’t find success and still needed meds, then I think the stereotypes would die down.  I think we should work on spreading that message.  Along with the message that type 1 and 2 are very different and that there are 11 types of diabetes (that we know of) so people should be aware that they can’t assume anything on some diabetic’s behalf-they’re bound to be wrong.  Maybe I’m dreaming but I think that if people were to hear this on the news they’d think, “Ohh ok…I didn’t know that.”

Focusing so much on how inaccurate the phrase “reversing diabetes” is hinders us, not helps us.  I think this because people explain that diabetes can’t be reversed by saying there is no cure and that once you have it you always have it-and I don’t hear doctors making that message clear at all.  So when we talk without any back up from the medical community we don’t get the attention we deserve.  Kind of like if I claim something without showing a study to back it up.  Why would anyone believe ME when I say that diabetes cannot be reversed?  I think that we need to seek clarity from the medical community and demand they set each other and the media straight.  We need their help to define the truth and to help us spread the word that diabetes cannot be cured, just put into a temporary remission in some people’s cases.  Also, to include that it is a progressive disease, getting worse over time.

A lot of people rant over this issue with a little too much disrespect, too.  It flies over the blogosphere and makes us sound even less credible than might already be to the general public.  Why would we attack people’s ignorance?  That’s a recipe for disaster.  Another thing we do that doesn’t work is exaggerate the truth.  One thing I’ve read a lot is that most type 2 diabetics are thin. This hurts us because suppose people go to the book I have here published this year by the ADA where it says that “three-fourths of all people with type 2 diabetes are or have been obese.”  That’s the majority.  So if we say that the majority are thin we’ve just lost credibility with people.  Trying to stop one myth in it’s track with one of the other extreme is not the way to go.

Instead we should be honest and do our best to give statements that leave people with the information that type 2 varies very much person to person.  We should set the example on how we want to be treated.  It sounds like Elementary School but over time I’ve realized that although it’s tempting to give people a short, simple, and informative answer, we simply can’t do that with a complicated disease.  We are going to have to take up more of people’s time or we are going to have to do something like this:  Next time someone says “If only type 2 diabetics would eat better and exercise more, they would be able to get off meds” we could say “That may be the case for some people but not for everyone because diabetes varies so much.  You know, maybe if the government used it’s money for fruit and vegetable subsidies instead of corn, beef, and tobacco subsidies, people would be able to afford healthier food.”  In other words, emphasize that “it varies” and then let’s remind people of one of the roots of the problem.  If we had better preventative care, if we all had easier access to fresh, healthy foods, if we didn’t have to tempted by a liter of soda being cheaper than a head of lettuce, maybe then more of us would eat better.  Everyone knows that’s true, they just need to be constantly reminded so that the bitter sentiment surrounding our health care crisis doesn’t get thrown onto those of us with the disease.

Part of our constant message should be that no one with diabetes should be blamed.  Compassion and understanding should be our focus because a lack of compassion breeds hurt and anger.  Then people take the hurt and anger and lash out illogically at those of us who are struggling with a disease or those of us with the disease lash out on ourselves in self destructive ways.  It’s a cycle we don’t want to continue living with.  And that’s why I think that it’s not as simple as telling people diabetes can’t be reversed.  It’s as complicated as explaining that it varies a lot, is very progressive, and that it’s mere presence is an indicator of how badly we need a cure and of how many things need to change in our society so that we can all be healthier.

Fear of How We’re Perceived

 

I once worked for the “call before you dig” company in my state of Virginia.  I was one of two or three people that would answer calls in Spanish and write up a “ticket” for those who needed to dig somewhere, be it for gardening or a new commercial building.  We realized over time that the laws about digging safely in Virginia were not being effectively communicated to the Spanish speaking community.  This was noted as a major problem because of the large number of construction/landscaping work that is done by Spanish speakers in Virginia.  Employers would risk going out of business as of a result of large fines and people would get hurt as a result of unsafe excavation.  So I was invited by the State Corporate Commission to travel to Northern Virginia and give an educational talk to about 100 Spanish speaking contractors.  We hoped these men would get the info they needed and spread the knowledge to their employees. 

At first, my big worry was my stage fright and the fact that I have never spoken much Spanish.  It’s generally embarrassing to have been born in South America and not have a solid grasp of my first language.  Anyway, once I translated the power point presentation, It suddenly hit me.  I’d have to manage my diabetes in a room full of Hispanic men while dealing with major nerves!  Honestly, it was quite intimidating.  I love speaking in front of a crowd but I get terribly nervous.  Sick to my stomach and dizzy and sweating nervous.  This always affects my blood sugars, too. 

I prepared the best I could and luckily, wasn’t going alone.  A friend and coworker whom I had been teaching Spanish to, managed to pick up a lot very quickly and would be going with me to help out.  The night before the presentation however, my boss and my coworker friend and I went out for ice cream.  Conveniently so, my insulin pump, which I was on at the time, decided to start beeping and reported back: “no delivery”.  I wasn’t getting any insulin and had already ate half of my enormous ice cream.  We headed back to the hotel and I ran up to my room to change my site and give insulin.  My blood sugar rose over the next 3 hours.  Eventually, I gave an insulin shot and took out my infusion site once again.  The second bent cannula of the night.  Great.  My blood sugar was around 400 and I worried I wouldn’t be good to go in the morning.  I had also just used my last infusion set so there was that worry.  Luckily, around midnight my blood sugar started stabilizing and I was able to go to sleep by 1:30am. 

The next morning my blood sugar was fine but I felt dehydrated and tired from the night before.  I had only slept five hours.  I was moody.  All I could think of was, “As if it wasn’t bad enough that I’m nervous talking in front of others and lack ease in using technical excavation terms in Spanish, I have to worry about my blood sugars, too!”  I took a few deep breathes and decided to have breakfast.  I was already shaky from being nervous, I didn’t want to be trembling from hunger, as well.  I didn’t eat much but what I did eat was carbohydrate loaded.  Right before the presentation was to start, I stood in a room full of contractors, many of whom were looking at their watches.  They wanted it over with, they had work to get to.  And what was I doing?  Going over what I was going to say?  No, I was sipping a juice box to fix a low.  Why did this bother me?  Because ever since I was 6 years old, when the teacher asked for a strong young man to help her carry books, I raised my hand really high in defiance because “Girls are strong, too!”.  I don’t know why but I’ve spent my whole life making it a point to prove that women are as capable as men.  So I just didn’t want to come off as precious or vulnerable, drinking juice from a juice box, speaking Spanish in an English accent to a crowd that intimidated me.  I wanted them to take what I had to say seriously, because it was serious.  I had just got done translating for some contractors who got in trouble (meaning they paid HUGE fines) for not abiding excavation laws and they made “little women” jokes in front of me.  While I was translating for them.  I suppose that experience kind of traumatized me and I was not going to have that happen again.

So I finished my juice, threw it in the trash, got out my meter and tested in front of everyone.  I wasn’t planning to but, I needed to tell myself to be confident and this was a way to force that upon myself.  By one simple and blatant act.  One man saw me and said to the man next to him, (and I’m translating) “Whoa, did you see that?  She pricked her finger and then licked the blood!”  I put my meter away and waited for the introduction.  Then, instead of my polite and gentle script, I veered off a little.  I mentioned that obviously, I didn’t have a clue how hard they’re jobs were.  I wasn’t aware of the challenges they faced day in and day out.  All I knew was some of them had been losing jobs, losing companies, losing money, and an unfortunate few had lost their lives.  So I asked they listen to what we had to say to them, bear with our Spanish, and just know that in the end, we weren’t giving them the information for our benefit, it was all about them.  A couple men got kind of wide eyed and nodded, respectfully.  The presentation went well. 

Luckily, a lot of men had questions-a great sign they were paying attention.  Some expressed gratitude for us presenting them with the information in Spanish.  One man said, “I was nervous today!  I felt like my business wasn’t going to last because I couldn’t understand the legal stuff and I’ve been feeling so left out.” 

I thought about how a big part of my nervousness that day had to do with dealing with my diabetes and how it made me feel different in a public, exposed way and how It was going to possibly cause my work not to go well.  I realized the people I was presenting to were feeling much the same way.  I wish I had known that before biting all my nails the night before.

Either way I now know confidence, true or faked, is very useful.  Sometimes, one of the biggest barriers between us and our health is how we fear we may be publicly perceived.  It’s happened to me quite a lot, especially when I was a teenager. 

To the non-diabetic bystander, testing blood sugar in front of a crowd doesn’t seem like a big deal.  Yet, you know what I’m talking about.  We’ve all been there.  Maybe during a first date, you didn’t feel comfortable whipping out your meter on the table with food or perhaps you prefer to deal with your diabetes related issues in the restroom at work so no one sees what you’re doing and think you’re not capable of your job.  The thing is, as valid as our feelings are, our health isn’t subjective.  It’s going to respond to what we do, when we do it.  So hopefully we are able to do whatever we must for our health.  It’s not always easy, but it’s worth it-we’re worth it. 

And just as I realized the day of the presentation, my fears of being the different one, the one left out, were not just my own.

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