The Negative Language Around Diabetes
“What is it” or “OMG!”
Say the word ‘diabetes’ to someone who is newly diagnosed and I believe one of two things come to mind:
“What is it?” or “OMG!”
There is amazing information for the “What is it?” here.
Unfortunately, the “OMG!”, screams louder than anything else you hear or see. It is plastered everywhere. The internet can be a good place, rich with information that is helpful and valuable. I believe that empowerment is the goal as well. However, that is not necessarily the first thing we see. The down side is often more prevalent. The homepages of many websites have words that send our minds to negative places. I want to talk about some of those words and phrases so we can avoid the negative knee-jerk reactions that cause us pain and anxiety.
‘Improve my life’ or ‘living better’
This implies to me that there was something wrong with my life in the first place. That’s a broader message than one related to diabetes specifically. Could my life or lifestyle improve? Yes, certainly, I suspect everyone’s could improve. It speaks to me more as a guilt trip. I did this to myself; I gave myself diabetes. Nope. I can create enough guilt in my life. Thanks, I don’t need anymore.
‘Difficulty living with…’
Now I’m thinking that my life has changed forever and that I will have difficulty living my life from here on out because. I. Have. Diabetes. Here’s a counter thought. Many people don’t have difficulty living with their diabetes. It is just a part of who they are now. I’m not suggesting that for everyone that it is an easy path, not at all. Maybe benefit of the doubt could apply here.
‘Hospitalized with diabetes’
What? WHAT?? Oh great. Now I’m going to end up in hospital because I’m diabetic. It could happen, yes. It could happen at any time for any reason but I question the need for this to be on a homepage. Catastrophizing cannot possibly be helpful. Scary? You bet!
‘Risks’ ‘side effects’ ‘complications’
Ok. I really struggle with this messaging. Suppose I’m new to diabetes. I have just received the diagnosis. I don’t even know what it is yet and I see those words. If I wasn’t scared before, I am now. What ‘risks’ are they talking about? Risks to meds I may be prescribed? Risks I may not handle my diabetes perfectly each and every day? Heck, there are risks in stepping off the curb to cross the street. Life is full of risks. Should this be the first thing I read? I think not. Next is ‘side effects.’I’ll share an example from my own life. I was recently given a new diabetic drug, an injectable (not insulin). The company that manufacturers the drug has information on their website. It states 8-28% of new users will experience nausea when first starting the drug. This is factual information. Others on the internet reported the nausea was horrendous, severe enough to stop the drug. I worried a tad, ok a bit more than a tad, about this. I bought the medication; I planned my work schedule around being off; I even had a plan for throwing up from the nausea in case I needed to. I had myself convinced it would happen to me. It didn’t. I failed to see that 72-92% of new users didn’t get nausea! Then there’s ‘complications.’ I haven’t even figured out the disease and I’m seeing warnings about complications. I really don’t want to deal with that before I have learned to breathe with the diagnosis. It’s important to recognize that complications can occur and we need to learn how to avoid them but maybe that should be a little less up front and out there. Make the information easy to find, however, for when I’m ready to read it.
This one sends me over the edge. Now I’m alone? My family, my social network, my employer, they’re not there for me anymore???? I get that not everyone understands diabetes and what it means to live with it. I also get that parts of the journey can be lonely. I don’t deny that. But setting people up to be believe they will be alone or isolated at the start is unacceptable. And I have to ask, how is that helpful?
It’s pretty natural to be scared with a new diagnosis. I’m not suggesting that the picture painted should be all fluffy kittens and red roses. I am suggesting there should be balance. Surely there is another way to message the important stuff. I rail against scaring people. I rail against setting people up to believe that diabetes is all doom and gloom. It’s time to settle down the “OMG!” for more positive messaging. Put the positives out there first. Let people know it will be ok. Advertise the community support. Leave the scary stuff for when we are ready to hear it.
I am stepping off my soapbox and laying down my megaphone now. It’s time to move on.