Category Archives: language

Including us. Especially us.

February 26, 2019 – 10:11 am

This Tweet really spoke to me the other day:

Renza was at the annual ATTD Conference in Berlin, and she had likely been watching various presentations from companies showing their latest D-tech developments in beautiful, asthetically-superior ways with beautiful, asthetically-superior people. Hence Renza’s tweet.

It should be no secret that the outward message about diabetes, from technology companies, drug companies, and even non-profits, tends to be positive. I don’t think I’ve ever seen a Medtronic, Tandem, Dexcom, Abbott, Eli Lilly, Novo Nordisk, Sanofi, or even JDRF or ADA ad or presentation showing someone dealing unhappily with the day-to-day existence of a chronic condition.

The most obvious reason for that is because it’s not pretty. The second most obvious reason for that is because it’s hard to explain the burden of living with diabetes.

That’s why I sent this tweet in reply:

The thing we need to continue to do is tell our story. No one can explain the feeling I have when late night diabetes attention is required better than I can.

Insulin affordability issues? Listening to people tout their cinnamon okra yogurt cure? Day after day of early morning highs or early morning lows? We’re the ones who experience it. We’re the ones who should talk about it.

No one will know what it’s like unless we show them what it’s like.

There are plenty of things that add to the burden of living with this condition. If they can’t show it in their presentations, I want groups and companies to at least show me how their product or their initiative can help reduce the burden of living with a gusher when performing a set change at work, a failed CGM sensor, and the fear of dying in our sleep.

We, the people living with diabetes, are in the best, perhaps the only, position possible to share this and get non-profits, corporations, and academics to acknowledge and include burden as a factor in their public-facing material.

Yes, of course we can be successful, happy people even after a diabetes diagnosis. But our lives are not the same every day, and there is often a fair amount of bad in addition to the good of living with this disease.

No one should ignore that, or try to put it into a convenient corner for us to talk about when everyone has left the building. Including us. Especially us.

By StephenS | Tagged , | Comments (3)

#LanguageMatters – #LanguageEvolves

January 8, 2019 – 10:11 am

I’ve been following a conversation on Twitter for the last few days. Mostly, I’ve been following it because I was tagged in the original post, along with a few others from the Diabetes Online Community. The original post covered a familiar theme, and it went something like this:
 
 
Do you prefer to be called a “Person With Diabetes” or “Diabetic”?
 
 
There were a ton of responses, and there still are, even today. But not from me.

Yes, I prefer the term Person with Diabetes. If you prefer something else, okay with me. If you want to talk with me about that one-on-one for a while, that’s fine too.

But I am so over discussing the PWD versus diabetic thing. I also can’t believe I just said I am so over something.

Some version of this same question comes up on my Twitter and Facebook feeds at least once per month, sometimes more. It’s been asked and answered and gone through so many times that further discussion on the topic just seems like white noise to me.

Can we all agree that the preference on this subject lies with the actual person with diabetes? And that the health care professional, co-worker, or family member should respect that person’s preference? Good… now, let’s move on.

Can we all agree that #LanguageMatters, but also that #LanguageEvolves? Or at least that it should, anyway?

What’s the next big thing to discuss? What’s really important to you right now? What kind of language should we be using to help each other? Who remains to be educated about patient-focused language in health care?

If you’re newly diagnosed, and a chronic condition isn’t something you’ve had to get a grip on yet, I get it. In that case, it’s okay to ask about preferences, and about why the words we all use can make such a difference.

For me, however, the discussion of language has moved far beyond that. I can see that language in diabetes, and in health care in general, will continue to have a big impact on our lives. It must. Let’s move the discussion forward, because there is so much more to define. There are so many more to educate.

Now that we all agree that #LanguageMatters— let’s start to discuss how to evolve our conversations to cover more than just the descriptions of ourselves.

By StephenS | Tagged , , , | Comments (3)

The Language of Gratitude.

August 14, 2018 – 12:46 pm

Language has been a recurring theme around here for some time, and it’s really interesting the way communication is intertwined throughout our lives. If I were to take a guess, I’d say that at least half the projects that didn’t work out or the friendships that faded out in my life were because I neglected to remember that what we say, or don’t say, every day makes a difference. Sometimes to us, often to others.

These days, patients are getting really good at fighting for the things that are important to them: affordable access to drugs, treatment that helps rather than judges, diabetes truths rather than diabetes myths. But… how much time do we spend sharing what we’ve learned? How much time do we spend thanking those who have helped us along the way?

Some of us are good at that. I’m certainly better at it than I used to be. And sometimes… we just forget. Or worse, we figure that since we’re the ones living with diabetes, when things work out for us, we’re just getting what we deserve and we don’t even need to consider the fact that someone else might have had to make a sacrifice to please us.

We can certainly get by with that attitude. But we’re not going to make a lot of long term friends in the process.

So, when my endocrinologist finds a sample or two for me to take home, I’m sure to thank her.

When the receptionist at my GP’s office finds a way to get me an appointment today because I’m sick today, I thank them.

When my diabetes friends take the time to ask how I’m doing, I respond in kind and try not to talk about myself too much. I’m still working on that one.

When people raise money for research and better care for People With Diabetes, I thank them.

When medical device companies overnight a replacement for a broken part, I am appreciative.

Most of all, I truly try to practice the art of paying it forward. For someone else’s sake, and for my own too.

These things don’t cost me anything. Occasionally, it might mean saying something nice about a person or company that I haven’t been thinking nice things about all the time. But the language of gratitude requires us to recognize each effort on our behalf without remembering the real or perceived slights we’ve encountered along the way.

It’s a learned practice. It’s something I have to remind myself to do all the time. But when I put the language of gratitude into practice, I find myself feeling better. And I can’t put a price on that.

By StephenS | Tagged , , | Comments (1)