Include and help those who need it most

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The Juicebox Podcast that posted on February 20, 2018 features Nicole, a young woman in her 30s diagnosed with T1D when she was 17. She’s living the life we all fear - one of a growing list of diabetes complications. She’s dealing with retinopathy, gastroparesis, nephropathy, and other secondary complications of diabetes.

Early in the 70-minute podcast, Nicole’s comment jumped out at me.

For the people that are running marathons and living well with diabetes, there’s also this group that aren’t living well with it. And I really want the community to acknowledge that and embrace it so we can help each other.

Seventeen-year old Nicole had difficulty adjusting to her diagnosis and “got stuck” in a 15-year period of denial and poor self-care. She understands and accepts the role she played in her current difficulties and definitely does not play the poor me victim role.

Later on during the podcast she references sites within the diabetes online community where the cool kids hangout. These sites are filled with success stories and obvious pride taken in few or no complications after long years of diabetes. She reminded the listeners that there are a large number of people like her.

Looking back on my case and thinking about Nicole, I can see that my T1D diagnosis at the age of 30, instead of 17, was a lucky bit of fate. I can see my 17-year old self falling into that same path Nicole fell into. I was lucky and Nicole’s story reminds me about that.

I’ve struggled in my time here at TuD with how to handle success in my diabetes treatments. I wanted, and still do, a place for me to post my successes, not just because of pride, but also because I wanted to shout from the hilltops something useful that I’ve discovered.

Always nagging around the edge of my joy of sharing some diabetes success, like a 24-hour CGM “no-hitter,” was the thought, “how does this appear to someone caught in the throes of diabetes despair and inaction?” Someone caught for extended periods in the hypo-hyper roller coaster, someone who spends little time in range. I think that people like Nicole would feel alienated and marginalized by my comments.

What can we do, together, to harbor the significant slice of our community who live on the dark side of diabetes? They need support, too, probably even more than people like me.

I’m hoping this topic receives some participation and comment. Listen to the podcast. I know it’s what we fear and wish to banish from our minds, but it will give you some insight and maybe even inspire something we could do here to make people like Nicole feel respected, valued, and welcome.

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I got my A1C below 7 for the first time in my life just a few months ago. Previously my control was lukewarm at best but I also don’t have any complications (this is probably due to genetics more than anything else). That fear of complications has driven me my entire life and my poor control always worried me, thinking that one day I would be on dialysis or blind, but if anyone had bragged to me about their successes then I would have asked them how they were doing it and tried their tactics. I’ve tried every diet out there from the ADA to raw vegan and finally settled on low carb because it gave me the best results.

My advice to anyone struggling with their diabetes would be to take inspiration from those of us who have conquered the beast that is diabetes even if only temporarily. Most of us know that any little thing can upset the apple cart and leave us frustrated and feeling ill. When I was growing up I had frequent seizures from low BG’s and school was torture because of it. I know what it feels like to sit on your bed and cry because you can’t bear to give yourself one more shot and needing someone else to do it for you.

Knowing that there is a problem is the first step on the road to better health and many complications can be reversed or lessened with good BG’s (just look at Dr. Bernstein). My impetus to finally get a handle on my diabetes was I was sick and tired of being sick and tired. Never give up and research anything that you think might help.

I am proud of my recent accomplishments and having good BG’s makes me want to do even better (although I don’t think I’m one of those people who is going to get non-diabetic A1c’s until medicine advances even further). Sorry for the long answer :smile:

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I’ve helped a few people along the way, but it is not easy to reach those who need it most. I vividly remember the evening I got on the phone with Richard Bernstein (not yet Dr. Bernstein) and how his advice changed my life. And so, when I had the opportunity, I would try to share the wealth.

One young man I helped was going to a doctor who felt that blood sugar meters were not for individual patients, a common theme at the time. Things have changed, but those of us who are working at tight control don’t always have the support of the medical profession. Or they’re OK with US doing it but wouldn’t recommend it to most of their patients.

So I think the issue is knowing how to identify and help those who need it most. There are likely a number of diabetics within miles, if not yards, of my home. But they will never know I could help them because they don’t know I exist. And many who could use our help would never think to go looking for forums such as this one. There is no “buddy” system that I know of that would pair those who are confused and overwhelmed with those of us who have more experience.

On the forum, we talk about technology regularly. But to a 17 year old, or even just a new diabetic, carb-counting, prebolusing, dawn phenomenon and a host of other topics, surely seem overwhelming. Diabetes educators can help, but even they may not be able to provide the regular on-going support that’s needed.

I’ve been aware of the poor control issue for many years, but I’m not sure what changes we could make to bring more people to the table.

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I think it’s important to celebrate the successes but also acknowledge the struggles. I’ve posted in the Flatliners group both aspects of my story. I sometimes have amazing flatlines, but other days including this morning, I wake up with my Dexcom screaming off-the-display HIGH for the past four hours. Ironically, opposite to @Terry4, I’m often nervous to post about these terrible days I have and so refrain from doing so.

Sometimes feel like too much emphasis is placed on athletes and people with “perfect” control in the T1D world, even though for most of us, that is not our reality. We all also experience bad days and burnout, adn and I think a lot of people would find value in the stories of how, even those who post in the Flatliners group, have days where their blood sugar is so high that their meter can’t read it. I think people would also find value in hearing about how those of us who have “figured it out” got to where we are, because it wasn’t an overnight change, but often took many small steps over years.

I don’t think this issue can be shouldered by us alone. Everyone in the diabetes community, including healthcare professionals, has a role to play. Diabetes is a complicated disease, even more so because it interacts with all aspects of life, and life itself is complicated. Even the professionals have not figured out how to help people who struggle so much with diabetes control, which is actually the vast majority of people. One problem with communities like this one is that they really are made up of only the small niche of people who are interested in maintaining tight control. I find that Facebook groups have a more general representation of the overall diabetes population, ranging from those with good to poor control. But the people who struggle the most, who may have diabetes at the bottom of their priority list, may not even think of joining a diabetes Facebook group, so it may be very hard for the DOC to even reach them.

Just some ideas…I’m off to work, but will return to this thread this evening, since I haven’t read any of the other comments and am interested in what others have to say.

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Thanks so much for posting this @Terry4. It seems you need a subscription to listen or perhaps I just couldn’t find the right link. I found the same podcast on youtube in case anyone else has trouble: #151 Complications are Complicated - YouTube

This podcast was very, very sad, but I really encourage everyone to listen! There was a portion of the podcast where Nicole discusses trying to join a diabetes support group and feeling incredibly judged by other pwds in the group because her numbers were so far out of range! I agree with Terry that I would really like to acknowledge this group of pwds and help them feel welcome in this community. Hopefully as @Firenza said, they feel inspired by the success stories on here. To be honest though, when I first joined this site I was pretty intimidated by some of the posts (especially the flatliners category), and I have an excellent A1c and pretty good control! I’m not saying that category isn’t important! It’s important that people who are well-controlled can share their successes and failures too. However, I’m wondering if we might be able to create categories or resources for people like Nicole that might help them recognize other posters here as allies and sources of support.

It sounded like Nicole was given so little knowledge when she was diagnosed that she really didn’t have any idea how to even start managing more rigorously. Perhaps we could add a new category that has some of the basics for refining diabetes management techniques (maybe this already exists and I don’t know where?). That category could have some definitions and general diabetes management concepts (prebolusing, dawn phenomenon, learning how to determine basal rates, learning how to determine a correction factor, etc). Obviously this would need a good disclaimer. In addition, sharing moments when things haven’t gone well in that category could potentially help new members struggling with the “basics” feel more at home and connected here.

I know diabetes is complicated and like @Jen said, we can only do so much. I’ve benefited greatly from a couple of different forums about diabetes though, and I do think we could make an extra effort for the group of pwds that have the most need for support.

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Totally agree.

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I look at how hard we here on tudiabetes message boards, we slam docs and medical providers for not helping those with A1C’s of 5.5 to get to 4.5.

But at same time there are so many out there with A1C’s, of 10, 12, 14 who are so much more in need of tools, technology and much more help in applying it all. And they are almost completely ignored in our discussions.

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Eh, I don’t know. Nicole said she specifically sought out a diabetes support group. Millennials are pretty likely to use online resources when they’re available.

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And she said that that group shamed her.

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FWIW, when I’ve met T1s (or parents) who are newly dx’d or just looking for resources, I direct them here rather than Beyond Type 1. It’s important to know that life as you knew it did not end at diagnosis, but an exclusive focus on “Yes you can run the marathon, my kid did! Now she’s climbing Mt Everest!” isn’t really what I think of as a resource. I want to send them somewhere where they can work through problems and challenges, and BT1 just isn’t looking for that kind of interaction. But I don’t think there’s any danger of TuD becoming a forum given over to apple polishing. I think it’s obvious at a glance that people come here to get answers and talk about problems, as well as crow about the occasional happy endo visit.

One hesitation I do have is that the online forum medium itself is pretty old-school at this point and naturally trends toward older participants. We do have some younger members here, but it’s not exactly a strong suit. I belong to a few T1 Facebook groups that have a pretty good mix of older/younger, though it’s not a great medium for any kind of in-depth interaction. And FB itself is pretty old-school from a millennial’s p.o.v. (“Ew, my parents hang out there!”). I’d be interested to know what sites anyone would suggest for someone in Nicole’s position?

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Agreed.
However, how much benefit is there if the medium does not lend itself to in-depth interaction?

I think Facebook is not oriented towards this at all and is quite bad in that respect. I don’t know what the cool kids have now - snapchat, instagram, really I have no clue.

Based on my limited understanding, these newer social media thingers appear to be designed for shorter and shorter attention spans.

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I think this sentiment is shared by many of us here. Nicole’s story, however, made me realize that not everyone shares that mindset. It makes sense to me. When my blood sugar is temporarily out of range, low and high, it does affect my attitude. Imagine if your BG was out of range almost all the time. The cumulative effect of that metabolic chaos seems like it could overwhelm even the strongest spirit among us.

Perhaps this is where the medical community could see us as a valuable resource to recommend to their patients. Some of us have figured out how to treat diabetes, at least our diabetes. Why don’t medicos appreciate our expertise and use us to help their patients? Insecurity? Not enough time? Fear of liability?

This really made me cringe! Wasn’t there a professional facilitator who could have sensed this shaming and moved to counteract this? I encourage everyone to listen to this podcast. It’s powerful testament to an issue we like to ignore. Nicole is truly working to help her community. We should listen!

Maybe the flatliners and similar groups should have an introductory paragraph or two that can put the values of that group in some balancing perspective. What do you think?

I makes total sense to me that people who live for weeks and months well out of a healthy blood glucose range are so beaten down, it would be unreasonable of us to expect that they would reach out to us here and elsewhere in the DOC. This is where docs, nurses, and diabetes educators could help by steering some of their patients our way.

We can do better. Doctors and all medical professionals need to see patient peer support as a credible and viable way to help their patients. Maybe they don’t trust us.

I do think this longer format online community can be powerful for any patient that’s barely hanging on and needs some advice about their next meal, not how to climb Mt. Everest! I get the inspiring stories that feed the hopes of patients, especially newly diagnosed children. But that’s not the whole package.

I’ve recently spent more time on Facebook following the automated insulin dosing groups. Communication is generally shorter and more superficial. Maybe that’s fine where tech is involved, but the psycho-social aspect of diabetes requires more space. I also worry about the attention span of younger people growing shorter, yet I’m still amazed by the strength and focus of many younger people. I’m thinking of the high school students down in Florida right now.

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Totes agree :wink:

The 670G Support Group tries to contain and organize a lot of detailed information in the FB format using pinned posts and whatnot, and it’s really shows how bad an interface it is for that kind of information.

Ain’t it da truth.

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I do mention this site just about every time I see my endo, and she’s definitely aware of it and supportive. I get the impression from her that her colleagues are too. But I don’t know that they ever actively recommend it to new patients or ones who haven’t stumbled across it on their own.

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Same here, after starting with the 670. The worst thing about FB for this stuff is not that individual comments have to be so superficial, but that the whole system is so ephemeral and the search functions are so lousy. There’s tons of info here on TUD going back to the beginning of the community, and it’s still readily accessible, even if it was on the old site. Whereas on FB it can be hard to find stuff that was posted earlier the same day.

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When I refer to healthcare professionals, I don’t just mean them referring patients to online communities or support groups, though that might be helpful. I mean the ENTIRE way people are educated about diabetes sets them up to struggle. Fixed formulas, high-carb diet plans, “eat whatever you want” mentality. How many of us who have figured out tight control actually do any of that? As far as I’ve read, we’ve all thrown that stuff out in favour of dynamic management, low-carb meals, and/or figuring out how to handle individual foods (whether that’s avoiding them or experimenting to figure out a complex bolus plan). If healthcare professionals worked to update their standards and recommended some of these management tools, maybe patients would feel more empowered about actually having the ability to improve their control. I think right now a lot of patients (and I was in this group until I got a CGM and started using dynamic management and eating low-carb) just feel that they don’t know what to do, their doctor doesn’t know how to help them improve control, so they give up after a while. Learned helplessness, if you will. I think it’s a vicious cycle that sets patients up for failure and begins, essentially, from the moment they are diagnosed.

Note that I’m not bashing doctors here. I’m bashing the overall diabetes-education system and the fact that it clearly doesn’t work. The ONLY people I see who give out advice that works are professionals who themselves have diabetes. Maybe the overall system should start listening a lot more to these individual professionals and the strategies they advocate for than currently is happening. Something has to change at the initial diabetes-education level before people with diabetes will be truly empowered.

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I concur. I agree with everything you wrote above! It took me 28 years to finally figure out how to treat my diabetes well. I faithfully went to the endo four times per year. I really did look to their advice to help me steer how I lived. I also consulted with diabetes educators, dietitians, and attended diabetes seminars. They just didn’t know. I should have been teaching them!

Jen, you’re looking at the larger medical provider environment while I’m considering if our little corner of the world might play a better, more connected role.

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I was fortunate to 1) be Dx’d at age 30 (although I was originally Dx’d with T2 cuz “they” only used the age criteria) and 2) I lived in San DIego, home to TCOYD, Tandem, John Walsh, Dexcom and Bill Polonsky. Bill’s organization Behavioral Diabetes Instiutue had a DiaBuddy program. They individually matched people with others with whom they had other things in common, and where one or the other successfully dealt with one issue or another. I recall getting assigned a newbier who was very interested in managing the beast, but she was also a fashionista. Our friendship grew over shopping trips and D stuff.

Because I choose to be empowered and be my own PCP/HCP (I have higher expectations for myself than many of the Endo’s I’ve met) I find reasons to take pride in my Dlife, and I do tend to beat myself up when things go badly. But I fight with “them” when they say I try to hard, aim to high (or maybe in our case it is aim to low). Like I shared with my DiaBuddy (no longer close since I’ve moved far away) if all I can say is that I look better than my old college buddies cuz I have to take care of myself - that is enough to keep me on the road I’ve chosen.

Yeah, I recognize that people on the forums to tend to be the ones doing well, joining the DOC is part of taking action. I like to believe that I can be welcoming and supportive of those who are new or who are struggling. Only members of this tribe can truly understand. Unlike Endo’s we understand that s**t happens - it isn’t cuz we ate wrong, or misbehaved. And I sorely wish the accusations wouldn’t immediately start when numbers aren’t ideal. I was so blessed to have an Endo where I used to live whose first statements were about having to look at the treatments we came up with - that it was time to look at them and maybe change - it wasn’t necessarily me.

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This is interesting. I wonder what held this back from spreading far and wide. We who live with this beast for decades have accumulated hard won D-lessons, especially if we’ve been paying attention. It would make sense to tap this bank of knowledge and put it to practical use.

It makes sense. We have the time, the doctors don’t. They don’t know what we know anyways.

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Great post, Terry!

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