Thursday, March 24, 2011

Diabetes Terminology: It's Time for a Change [Awareness Series #1]

Words have the power to build people up or tear people down.  Unfortunately, a lot of people don't know how hurtful and harmful their words can be to others, especially when it comes to diseases or disabilities.  These are often sensitive subjects for people affected by them, and cause a lot of personal turmoil on their own.  This anxiety is compounded when others (either intentionally or not) use terminology that is at best politically incorrect and extremely hurtful at worst.

Before I was diagnosed with diabetes, I did not think twice when I referred to someone as "diabetic."  Even when my sister was diagnosed with type 1 diabetes at age 16, I didn't realize how some people are affected by the term.  My sister often complained about our family bringing up her diabetes to everyone, because it was something that she wanted to keep private at that age.  By describing her as "diabetic," we were defining her first and foremost by her disease.  I truly didn't understand how much that could hurt until I personally was diagnosed with type 1 diabetes in August. 

I've written several times about how being referred to as "a diabetic" (with a capital 'D') irritates me.  Some people, especially those who have been dealing with the disease for many years, aren't bothered by this term.  However, a lot of people (myself and my sister included) would rather be referred to as PWD.  In the DOC (diabetes online community), this abbreviation is used to refer to "a person/people with diabetes."  This may seem like an argument of semantics, but it's really an important distinction for those of us that are affected by the term.  The reason being that this distinguishes us as people first...people who happen to have diabetes. 

I would almost guarantee that anyone who has any form of disease or disability does not want it to define their lives or who they are.  Yes, many times these things do tend to take over a large percentage of our time and attention, but we still don't like to be defined by them.  These terms put our diseases or disabilities (which, by the way, no one asks for) at the forefront, while most would prefer they be left as part of the background of our lives.  I am very open and forthcoming about my diabetes with those who are genuinely interested in learning more about the disease, but I get frustrated with people who assume they know everything about my life just because they know someone who is "a diabetic". 

For example, I was at a fundraiser meal with my husband one Sunday a few weeks ago and was wearing my insulin pump on a belt over my skirt suit.  When we got to the end of the line, a lady I used to go to church with asked me, "What is that on your belt?" I told her it was my insulin pump, and she replied, "Oh, I didn't know you were A DIABETIC."  I let that one slide, and told her that I was diagnosed as type 1 six months before.  She said, "Oh, I didn't know that.  I guess you can't have dessert then, huh?!"  I informed her that since I was on insulin, I had more flexibility with my diet and could simply cover the occasional dessert with insulin.  I'm almost positive, though, that she was thinking I didn't know what I was talking about, and that I should only be eating sugar-free desserts.  When I told my sister about our conversation, she said that lady had given her a lot of grief in the past as well over what she ate. (Also see: "the D-Police" in this post)

Then, just the other day, my mom and I were talking to another lady who seemed to believe she knew it all about diabetes because her neighbor and preacher (and her grandmother and son, who had both passed away) were "bad diabetics."  She told me she would bring me some sugar-free (but not carb free, of course) cookies next time she made some.  Obviously, she meant well; however, it is difficult to explain to people like this who have long-standing beliefs about the disease that what they think they know is oftentimes incorrect.  Clearly, the only way to fix this problem is to raise awareness and educate people at every opportunity.

"Bad Diabetics"
What's almost as bad (and just as frustrating) as people referring to me as "A Diabetic" is to hear people talk about others they know who are "[a] bad diabetic[s]" when diabetes comes up in the conversation.  This bothers me for two reasons: first, what in the world is a "bad diabetic"? (and would that person enjoy being called that to their face?).  Is it someone who truly doesn't take care of themselves, or just that diabetes is something they have to give a lot of attention to?  In the first case, you would be better off giving them some much-needed encouragement and support to take care of themselves better rather than discussing their bad health with others.  In the latter case, of course diabetes takes a lot of time and attention to control.  I suppose in that case I have it really "bad", because managing it often feels like another full-time job.  Furthermore, in some people's eyes, the fact that I use an insulin pump must mean that my diabetes is really bad, because otherwise I would just be able to diet and exercise or use pills like the other "Diabetics" they know. 

They often don't realize that the two types of diabetes are very different in terms of cause and treatment, and that just because I'll have to use insulin for the rest of my life doesn't mean I have the disease any "worse" than someone who is able to manage it with diet and's just a difference in type.  In fact, it's important to point out that the two types of diabetes are actually two very different diseases even though the end result (high blood sugar) is the same.  Type 2 is caused by insulin resistence (a condition in which your body doesn't use the insulin it makes efficiently), while type 1 is an autoimmune disease in which your own body attacks your pancreas (which it sees as a foreign body), causing it to stop producing insulin.

Secondly, talking about "bad diabetics" further reinforces the notion that we're all condemned to this one big category of people who don't take care of themselves and are destined for horrible health.  I don't know about you, but I try my best to have a positive outlook on life (including my diabetes management), and work very hard to keep my blood sugars within normal range.  Just because I have this disease doesn't mean that I'm automatically resigned to having amputations or other health issues in the future.  In fact, many people don't know that with tight control, your risk for having any diabetes-related complications is greatly reduced or can sometimes be eliminated. 

Furthermore, I believe that referring to people as "bad diabetics" may lead to situations of self-fulfilling prophecies in people who do not have the social support they need to manage their disease.  After all, if you always heard what horrible health you were in and already had problems with your disease, what motivation would there be to make the effort needed to change your situation?  I am a very motivated person when it comes to managing my diabetes, but a lot of people have trouble finding the desire or getting the help they need to adequately manage their health.  These are the people that are often referred to as "bad diabetics," and they're the ones that stand to be hurt the most by the term.

This phrase may seem harmless enough to people without diabetes, but it hurts every time I have to hear it.  It underlines the perception that diabetes is something you somehow caused or brought upon yourself for not living a healthy lifestyle, and that you can "cure" it by becoming more healthy.  Very few people know that type 1 is actually an autoimmune disorder, for which the causes are largely unknown at this point.  Type 2 has a huge genetic component, so even though lifestyle choices can affect its prevention/development or prognosis, it still isn't the person's "fault" for having it.

The notion of fault in diabetes is sad and hugely detrimental for several reasons.  First, it contributes to the general apathy towards diabetes and people who have it, which in turn prevents people from donating to diabetes research.  After all, why contribute money to research for a disease that (they think) people could prevent if only they'd lose weight/eat healthier/exercise more?  It's a vicious circle: lack of research and awareness, more people with diabetes, apathy towards the needs to stop, but how?  I certainly don't have the answer, but I do believe that more could be done in the area of awareness at very least.  If we could educate the general public on the realities of the disease and combat the common myths surrounding it, there might be more interest in funding diabetes research.

The idea of fault also makes it harder for those of us living with the disease to cope with the realities of having a chronic illness.  Having diabetes is hard enough to deal with without having to feel guilty for having it.  As I've already mentioned, it often feels like a second (or third, or fourth) job; and it's draining physically, emotionally, psychologically, and financially.  It's no surprise, then, that depression has a high comorbidity rate in people with diabetes.  It's obviously a challenging disease to deal with even under the best and most supportive situations, so it can be downright impossible to manage for those who receive little or no support.  The bottom line is that the perception of fault associated with diabetes is clearly detrimental to the people that have it and to the research that could possibly find a cure someday.  It's not fair, but it's part of our collective reality.

"The Cure"
The issue of a cure is also a controversial one.  I've had some heated exchanges with people over the subject, and it just goes to show how hard it is to educate people on a disease that is surrounded by so many myths.  Despite what you may hear from people or in the media, there is currently no cure for either type 1 or type 2 diabetes.  Even with cases of type 2 diabetes, in which many people are able to control the disease through diet and exercise alone, the underlying disease is still there; and since insulin resistence gets worse with age, it will become progressively harder to control for many people over the years. 
The belief that diabetes has a cure is obviously another hit for diabetes research funding, and sadly it's a common one.  One of my next diabetes awareness posts focuses on the need for diabetes education, and will provide some startling statistics on the general public's knowledge of the disease.  The study featured in my future post found that of the people surveyed:
  • 67% believed (mistakenly) that there is a cure for type 1 diabetes
  • 25% believed that the proper diet could "cure" the disease
  • 32% believed that exercise could be a "cure"
Just as insulin is not truly a "cure" for type 1 (it's more like life support, really), diet and exercise and/or pills treat the symptoms of the disease (high blood sugar), not the root of the disease itself.  Therefore, I am extremely hesitant to call them a "cure".  For me, a cure is something that completely and permanently erradicates a disease, not a temporary elimination of symptoms.

The bottom line...
Clearly, the words we use in relation to diabetes (and other disease/disabilities) can have an immense impact on both the people affected by it and the funding for research to find a cure.  Each of us has the power to change this, at least in our own families and communities.  Next time you hear someone use these words, please take the opportunity to educate them in a way that is firm, but not rude or defensive.  Some of these ideas and terms have been around for decades, so it's not going to be an easy or quick change, but it can happen. 

In addition, I've posted this "Diabetes Etiquette [for people who DON'T have diabetes]" handout before, but I thought it appropriate to share it with you again.  I first came across it in my diabetes education class, and think it's a great collection of advice for anyone who doesn't have diabetes on how to treat those they know who are affected by the disease.


Michael Hoskins said...

Won't echo what I said in the earlier post, but a lot of it seems to depend on the particular Person With Diabetes and how they do or don't dub themselves "diabetic." But we're all entitled to those differences in opinions, and every one deserves respect. So, preach on my fellow Diabetes Online Community member! Let's fight those D-Police and misconceptions as much as we can.

Alice said...

Thanks for sharing the Diabetes Etiquette card...I've never seen this before. This is great info I'd like to share with my family.

Ashley said...

You're very welcome! I thought it was a great, straightforward way to help PWOD (people without diabetes) learn about the disease as well as how to treat those of us who have to deal with it. Sometimes it's hard to articulate all of this in the moment, so I've even considered printing some to keep in my bag!

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