Over the past year or so, I have come across some diabetes truths that are not necessarily new, but I think I have a unique way of describing them, and I want to share these outlooks with the greater community.
Hi! How are you? Come in, please sit down. Welcome to the Next Wave T2D blog. I knew at some point, this was going to happen. I am relatively new to the world of diabetes, and I knew that at some time I would wind up blogging about it. The launch of this blog was based on the tension between two forces in my life:
Since my diagnosis, I have developed a fairly conservative philosophy on how I approach diabetes; watch and listen, when asked – answer truthfully, stay positive, and cultivate any unique outlooks I stumble upon. This philosophy is balanced against my general nature to seek out as much information about topics that interest me, and believe me, if diabetes can take away my eyesight, or feet, or kidneys, I am very interested! So as I “drink from the fire hose of knowledge” that is the diabetes online community, I usually come across something that peaks my interest.
When I find one of these articles/blog posts/Facebook pages/Twitter links/Instagram hashtags, my philosophical side kicks in: watch and learn, see if anyone else has written about this to validate my position or explain it in a different way to persuade me from my view. Stay positive – don’t let the cure/reversal/remission folks or the cinnamon hucksters get you down. So every once in awhile, something sticks, and my inquisitive nature exceeds my philosophical mindset. It is precisely at this point that my brain starts screaming, “I wish I had a blog so that I could work through this, somebody needs to know what is going on here.”
For instance, last December, a paper was released from the JAMA/Internal Medicine about Type 2 Diabetics and the frequency at which they use test strips. The premise of the paper was that Type 2 Diabetics use too many test strips, and how doctors could further restrict their patients use of the test strips. Based on repeated internet searches (and maybe that is my flaw), I could not find any discussion about this paper. I think the conclusions reached were not in the best interest of Type 2 Diabetics (and this is probably why I am writing a blog and not publishing in the JAMA/Internal Med Journal) and it keeps pushing through. I don’t have a medical background, but I have first hand knowledge of test strip practicality. So you will probably see a post about this sometime soon.
There are two other influences I should mention here on our first time together: First, another driver for writing a blog, just in general, is that there must be enough to write about at least 2-3 times per week. If the blog posts here only happened when I came across an article that I had strong feelings about, it would happen at best monthly.
To that end I have noticed (and I think others have noticed too) that although Type 2 Diabetics vastly outnumber Type 1 Diabetics in real life, it seems to me that the opposite is true in the diabetes online community. So this blog will be from a Type 2 perspective. To be clear, this is not an anti-Type 1 perspective, it is only a different starting point. I am also happy with the Type 2’s out there already making a difference online, but I think we need more voices in the chorus, if you know what I mean.
Lastly, remember back in paragraph two when I was talking about “cultivate unique outlooks that I stumble upon”? Over the past year or so, I have come across some diabetes truths that are not necessarily new, but I think I have a unique way of describing them, and I want to share these outlooks with the greater community.
So thanks again for coming by, let’s start a great conversation.
UPDATE: A good friend provided me with a link to the #IDF2019 conference in Busan, South Korea. In my opinion, Dr. Boulton’s remarks at the conference are reasonably consistent with the interview referenced below. I encourage everyone to view Dr. Boulton’s remarks. His remarks start at approximately 2:21:45 (h:mm:ss) and are about ten minute in length. Also, watch a little longer to see Renza’s response!
I need to start out with an apology. Due to the dynamics of a global diabetes online community, I woke up Wednesday morning on the North American east coast and shortly after read the following tweet:
I had not begun to drink my morning coffee, and as my brain took in the tweet, I mistakenly thought the speaker that was being tweeted about was talking about health providers using fear when discussing diabetes with their patients. I took a few minutes to gather my thoughts and tweeted:
Upon reflection, the waterboard comment was over the top, but I have to apologize for misreading the original tweet too. As the day progressed through morning, afternoon, and now sunset, I came to the conclusion that I needed to blog about this; and I needed to make sure I had this quote right before I started.
The quote about fear and diabetes comes from the incoming President of the International Diabetes Federation (IDF), Dr. Andrew Boulton. To be clear, Dr. Boulton is clearly a leader in the diabetes community. He has earned numerous awards from diabetes organizations around the world and is a prolific author. He is also a past president of the European Association for the Study of Diabetes.
That being said, there has been a steady stream of concern coming out of the IDF conference currently going on in Busan, South Korea. My first indication was the tweet shown above. Then the following tweet showed up in my feed:
and also the real-time response from the amazing @RenzaS:
So I wanted to get more background to start talking about this. However, as with almost all conferences, it is difficult to get the presentations and/or speeches while the conference is going on. Typically, you have to wait for the proceedings to be published. So I began to look around to find background material. I had a feeling that Dr. Boulton probably had said these things somewhere before.
Now, I can’t say for certain that this is what was said in Busan, but Dr. Boulton was interviewed back in 2017 by Christine Wiebe at Medscape. The text of the interview can be viewed here. It is a pretty quick read, and all of the essentials that we have seen today are there. Here is probably the key part:
Right now, governments still don’t take diabetes very seriously, especially compared with the attention and funding dedicated to cancer. Leaders of the diabetes community could learn from efforts to raise awareness and drive research in the field of cancer, he said, as well as from efforts to increase cancer screening.
“Fear arousal works,” he says. Many more people now get mammograms and other cancer screenings because they don’t want to die of cancer.
Unfortunately, prevention and screening are harder to “sell” with diabetes.
“The thing is, it’s not very sexy to take off your socks and shoes,” Dr Boulton says, referring to diabetic foot exams.
After reading this, I went back and re-read that original tweet that stirred my response this morning. That is when I knew I was incorrect. The Doctor is not talking about health care professionals, he is talking about a marketing campaign based on fear arousal. Using fear to generate awareness, research, and screening.
There is more too. Part of the interview touches on the very things that @RenzaS was talking about:
“We need societal adjustments as well,” he says. Cities and buildings need to be designed in ways that encourage healthier lifestyles, such as improving public transportation and walking paths. Advocacy organizations, such as the International Diabetes Federation, need to be more proactive in advancing the diabetes agenda.
So there at least is some common ground to build on outside of the discussion of fear.
So like I said, this is not a transcript of what Dr. Boulton said in South Korea today, but this past interview gives some indication as to the basis of his remarks.
Now, I still stand by the content of my morning tweet. Carrot and stick motivational tools are simply the wrong approach to the complexities of diabetes self-management. With some time and distance, I now realize that Dr. Boulton was most likely speaking to the audience of non-diabetics, and not people with diabetes.
After quite of bit of contemplation and thought, I have been trying to find the words to respond to a campaign of fear; even if the campaign of fear is conducted in the name of advocacy, research, and screening. In addition, it has been my experience that when speaking about chronic or terminal disease, it is best to be as specific as possible, and to not speak in generalities. We all live complex lives and our relationship with disease is also complex, so there is a multiplier effect. It may be that because Dr. Boulton has spoken in generalities that we are having this conversation at all. The problem is that any response also has to speak in generalities, and I will be the first to admit that Dr. Boulton is a much better speaker than I am. So just a quick caveat. I’m going to push forward, but as I do, I don’t wish to offend or misrepresent anyone. I’m typing through a minefield here, so please, constructive criticism is welcomed, if I get it wrong let me know, I want to learn. However, please don’t take this personal – that is not my intent. Also, please go back and re-read the linked article above. I need to take some quotes here, and I don’t want anyone to lose context.
First, I am uncertain as to what Dr. Boulton is referring to when he says “fear arousal works.” What is “working?” Dr. Boulton offers, “Many more people now get mammograms and other cancer screenings because they don’t want to die of cancer.” So this indicates the comparison of diabetes to cancer (personally, I think this is a poor path to follow). I posit that the best next step in this course would be to follow-up the subjective language (“many more”) with actual numbers to show the dramatic difference in cancer vs. diabetes screenings and polling data showing concern about a cancer diagnosis vs a diabetes diagnosis.
On the other hand, I wonder about this approach, painting the cancer community as based in a fear arousal campaign. Currently here in the United States the American Cancer Society current advertising campaign emphasizes the supportive role of the non-profit organization. Highlighting free rides and lodging around chemotherapy treatments. Patients (or actor portrayal of patient, I’m not sure) are portrayed as hopeful, somewhat smiling, and making aspirational statements about the future. Maybe the age of fear arousal has passed, at a minimum, it is an interesting juxtaposition given this time and place.
Moreover, when talking about patients, it has been clear to me that people with diabetes are often portrayed as causing the disease themselves. This is reflected about midway through the subject article with Dr. Boulton:
“Studies show that about one half of all type 2 diabetes causes could be prevented with lifestyle adjustments, Dr. Boulton notes. But the burden of prevention should’t be placed on individuals alone.”
This is where I think Dr. Boulton may ultimately come up short. Again, I don’t know what was said at the conference in South Korea, but given the similar themed article from 2017, Dr. Boulton states that half of all type 2 diabetes can be prevented, essentially shaming 50% of the type 2 community (and really shaming all of us, because none of us know if we are in the 50% that he states brought it on ourselves). At the same time he advocates for what I suppose is a marketing campaign to instill fear in the greater population. Maybe I’m foolish, but living in a world where millions of people living with a disease are shamed while simultaneously the general population is subjected to a campaign to arouse a fear of the same disease is something more appropriate in Panem, or New Chicago, or The Glade than 21st century earth.
I believe that Dr. Boulton should be applauded for putting research, advocacy and screening at the forefront of the International Diabetes Federation agenda. He is a talented and well respected leader in the diabetes community. However, I do not believe arousing fear is the proper way to move forward.
Recently, I was reading several online reviews of the YouTube Music app and it dawned on me that I listen to a lot of music. Specifically, I listen to a lot of music while being active and working out, and I think most people with diabetes listen to music while working out too.
With this in mind, music is going to be a part of this blog, and hopefully a part of the greater diabetes discussion. I can find tons of write-ups about the best glucose meter or low carb recipes. I think working out is a pretty important part of my diabetes maintenance, and music is a big part of it; at least as big as avocados chia seeds. So music, and the music infrastructure (apps, earbuds, playlists, best songs, the list kind of writes itself) are going to be part of this blog.
To get us started, I will share some of my audio ecosystem:
In time, I will get out a review of each of these, and let you know how they tie in to my diabetes experience.
In the interim, I copied out one of my playlists. I typically use it during my after-lunch walks, and it helps get my heart rate elevated a little bit (100-120 bpm):
This is the Day (The The) – I always like to start with this song. It is pretty close to the perfect 1980’s new age alternative positive affirmation song. I like to start my walks hearing “This is the day your life is going to change.”
Last Friday Night (TGIF) (Katy Perry) – A friend of mine once told me that all Katy Perry songs are great workout songs. I don’t think I am there yet, but I like listening to this song. The beat keeps my cadence at a fast walk, and if my legs hurt that day, I am reminded that I at least I am not hung over and have a house to clean up after a party.
Get the Party Started (Pink) – Pink is a force of nature. It seems to me that “Get the Party Started” is a little different from most of her music, but her debut single has the benefit of an upbeat pace, slightly higher than “Last Friday Night (TGIF),” this is where the real walk starts.
Love Shack(B-52’s) – Getting back to the 1980’s, love shack keeps the pace up and the party going in my earbuds.
She Bop (Cyndi Lauper) – Probably the fastest pace song of this playlist, walk-stepping through this song will probably get the highest heart rate of the playlist.
The Seed (The Roots) – Noticeably slower pace than “She Bop” and the music just fills your ears.
Uptown Funk (Mark Ronson/Bruno Mars) – Another great song that you would think is uptempo, but very walkable and at a good pace and cadence.
Tainted Love/Where Did Our Love Go (Soft Cell) – There are a number of cover songs that came out in the 1980’s that through their reinterpretation stand on their own (the Pointer Sisters “Fire” also comes to mind). This British synth-pop remake of the Motown hits is great to walk to, and it goes on forever.
5 Years Time (Noah and the Whale) – I don’t know where I was when I first heard this song, but it has stuck with me for a long time. A generally happy song of ‘sunshine” and “zoos” to cool down and finish.
This playlist has been put on Spotify under the name @nextwavet2d Vol 1. Please go ahead and use it during your next walk and let me know in the comments how it went.
Lastly, let me know in the comments which music apps you use and maybe one or two of your favorite songs to stay active with. I look forward to more beats and rhymes posts in the future.
Those who become regular readers of this blog will soon find out that I find myself appropriating work from far afield to relate to the diabetes experience. I figure that if we at times take the label as an “invisible disease,” then we can take lessons from anywhere, without boundaries (don’t get me started about the movie ‘Wreck It Ralph’, but maybe that is for another time). The extended quote below comes from the fantastic NPR podcast “Pop Culture Happy Hour.” It is an entertaining podcast, and the particular episode I focused on was about the movie “Late Night” starring Mindy Kaling and Emma Thompson. The quote was spoken by Margaret Willison of the Two Bossy Dames newsletter and Appointment Television podcast. For those truly dialed in, it occurs at the 16:50 (mm:ss) in the podcast, but listen to the whole show because they are all cool people.
Because what they are doing with Katherine Newberry is they are taking a character who came to power at a time when to be a woman in power meant that your job was to unsex yourself and be exactly like all of the other people in that space, despite the fact that you are a woman.
Now we are in a different cultural moment, where our expectation is that if you are different, you are going to use that difference to infuse and center your comedy, and you are going to use that difference to create windows for people who don’t have your experience to understand or experience better, or mirrors so that people who have similar experiences to you, but haven’t seen themselves in that space, have someone they can relate to and can finally see themselves represented.
The above quote is an analysis of the Emma Thompson character Katherine Newberry, a fictional late night comedian and talk show host. Now I never want to take away from equality in the workplace, and the analysis is pretty powerful and should stand on its own. I really love the quote as is. In addition, I in no way want to equate women in the workplace with a chronic disease. That is not what I am saying. What I am saying is that as Margaret Willison identified a shift in how female late night comedians utilize comedy, I also see a similar shift in how people with diabetes engage in their communities. With this in mind, my diabetes focused and yet addled brain heard the following:
Because what they are doing with [insert person’s name here] is they are taking a character who came to power was diagnosed with diabetes at a time when to be a woman in power have diabetes meant that your job was to unsex yourself hide your disease as much as possible and be exactly like all of the other people in that space, despite the fact that you are a woman person with diabetes.
Now we are in a different cultural moment, where our expectation is that if you are different, you are going to use that difference to infuse and center your comedy how you deal with diabetes, and you are going to use that difference to create windows for people who don’t have your experience to understand or experience better, or mirrors so that people who have similar experiences to you, but haven’t seen themselves in that space, have someone they can relate to and can finally see themselves represented.
And this extended thought has been wandering around in the back of my head for weeks. Part of me keeps asking, “are we in a different cultural moment with respect to diabetes?” Inherent in that question in my head is that there will become a time when this will happen. I think that is right. Is that time now? Well, every Wednesday night (#dsma), at about 10:00pm (EDT), I come away thinking YES. And every time I see a news article about reversing diabetes or a municipal public heath campaign directly associating eating a candy bar with diabetes, I think YES. More recently, every time I see the #Ihearyou hashtag, (is that redundant?) I think YES.
My brothers and sisters, I don’t think this is quite a call to arms, but I do believe it is time for us to start “creating windows and mirrors.” There is so much to a diabetes life that needs to be celebrated and shared. There is so much that the general public believes, but yet needs to corrected. Keeping to ourselves and showing that we can be like everyone else is dramatic and powerful achievement, but at this cultural point, it is insufficient.