How Community Health Workers Impact Diabetes Care

This content originally appeared on diaTribe. Republished with permission.

By Andrew Briskin

Andrew Briskin joined the diaTribe Foundation in 2021 after graduating from the University of Pennsylvania with a degree in Health and Societies. Briskin is an Editor for diaTribe Learn.

Two major factors that lead to poor outcomes for people with diabetes are food insecurity and a lack of social support. Community health workers can address these issues, connecting people with diabetes to the resources they need.

Community health workers (CHWs) play a crucial role in addressing public health, particularly in communities with lower socioeconomic status and higher rates of chronic diseases, such as heart disease or diabetes. Two of the most significant social determinants of health impacting these communities – food insecurity and social support – can have a profound effect on the ability of people with diabetes to manage their condition. CHWs can play a direct role in addressing these factors by connecting people with resources to access healthy foods, helping them advocate for themselves, providing nutrition education, and connecting with and supporting individuals on a personal and community-wide level.

CHWs are typically members of the communities they serve, who are sometimes in a paid position and other times work as volunteers. Because of how important it is for CHWs to identify and communicate with the people in their community, they typically share the same background, ethnicity, and language. CHWs work in many locations throughout the community, which can include health clinics, government facilities, churches, food banks, other community centers/events, or traveling throughout the area.

Food insecurity is an economic and social condition of limited or uncertain access to adequate food, according to the US Department of Agriculture. People who deal with food insecurity are often only able to afford low-quality foods that lack nutritional value, have access to only a limited food variety, or have disrupted eating patterns (where you aren’t able to eat multiple balanced meals each day). For people with diabetes, these eating habits can be especially harmful when trying to manage things like weight and blood sugar.

Food insecurity, which is a growing problem throughout the United States, has been further exacerbated by the COVID-19 pandemic. Estimates for 2020 indicate that over 50 million people (or one in every six people) dealt with food insecurity in the United States, an increase of 4.1% since 2018. Rates of food insecurity among people with diabetes are also higher than the national average, with estimates suggesting that one in five people with diabetes face food insecurity during any given year, even without the COVID-19 pandemic adding additional stress.

At the ADCES 2021 conference last month, Dr. Anjulyn Ballard, a research and evaluation fellow at the CDC involved in advancing work of CHWs, said, “By CHWs addressing food insecurity and social support, health disparities can decrease significantly within communities.”

Dr. Betsy Rodriguez, senior public health advisor at the CDC Division of Diabetes who trains CHWs, focusing on reaching ethnic minorities and bilingual health communities, joined Dr. Ballard in the presentation. She said of CHWs, “Their advocacy can impact many healthcare-related issues such as improving health while lowering healthcare costs, improving access to primary care, and increasing screening for major conditions such as diabetes, just to name a few.”

Together, they outlined a few of the ways CHWs play an important role in addressing food insecurity and social support in the populations they serve. These roles include:

  • Advocating for individuals and communities. This involves connecting people with helpful resources while also encouraging people to advocate on their own behalf.
  • Conducting outreach. It’s important for CHWs to establish trust through regular communication with individuals in the community.
  • Coordinating access to healthcare. This includes making referrals to healthcare providers, ensuring that people make it to their appointments, and serving as a liaison between the clinics and the individuals assuring as many people as possible get the care they need.
  • Providing coaching and general social support. CHWs should be able to inform people on where to find community forums or others in the community that can provide social support.
  • Providing culturally appropriate health education. This means helping people understand the guidance they receive from their healthcare provider (for example if there are language or education barriers) and providing advice that considers the food, language, and traditions of the specific community they serve.
  • Addressing financial hardship and environmental needs. This involves encouraging people to apply for benefits such as SNAP and assisting them in the application process.

diaTribe recently spoke with Quisha Umemba, founder of Umemba Health, an organization that recruits and trains CHWs in Texas. A certified CHW instructor and diabetes care and education specialist, Umemba discussed how CHWs can support community members in addressing food insecurity and social support.

“CHWs can help people with diabetes advocate for better nutrition and food choices in their community,” Umemba said. “Often, people don’t know they can approach store managers or owners and request a different selection of foods. They also may not know how to approach their local representation in government or how to start a community petition to address issues like food insecurity.”

CHWs can also connect people with diabetes to their local food bank or farmer’s market to get the food they need. “They can provide nutrition education as well,” Umemba added. “Sometimes clients might have access to healthier foods but they don’t always know how to cook them.”

Not sure where to start? At findhelp.org you can enter your zip code and be immediately connected with food assistance, help paying bills, legal aid, and other free or reduced cost programs.

Increasing CHW engagement that focuses on specific interventions can help promote health equity. Unfortunately, there is still a great need for additional funding and resources for CHWs, especially during the pandemic.

Drs. Ballard and Rodriguez said the pandemic has negatively impacted the ability of CHWs to perform their roles. COVID-19 presented the challenge of providing specific pandemic-related support to communities without the necessary funding or virtual resources, they said. Plus, the economic hardships caused by COVID-19 led to an increased number of people requesting assistance from their CHWs with food, transportation, and financial issues.

Umemba agreed. “So much of what CHWs do revolves around establishing a trusted relationship with their clients,” she said. “It was difficult at the onset of the pandemic, but I believe for the most part that CHWs now see that personal interactions don’t just have to occur ‘in-person.’”

Drs. Ballard and Rodriguez also recommended specific interventions to better combat food insecurity and social support on the community level, such as developing standardized training and increasing funding for CHWs across the board. Umemba supported these interventions, lamenting the lack of federal regulations to support standardized training.

“There is no standardized training program for CHWs at the national level, as it is mostly governed by different states,” she said. “When I think about standardized training as it relates to food insecurity, first we need to make sure that CHWs know how to screen for it as well as the other social determinants of health. Also, we need to make sure resources are provided before the patient leaves the clinic, and that appropriate follow-up takes places. CHWs can be trained to screen, assemble and provide the appropriate resources and then follow-up as needed.”

In general, getting support from a community health worker in your area can be an extremely helpful resource not only for general guidance, but to improve your health and diabetes management.

Towards the end of the conversation, Umemba discussed her start in the field, making new observations on the interactions between people with diabetes and various members of the healthcare team such as fitness trainers, dieticians, nurses, and CHWs. Noting how each of these experts was able to connect with people with diabetes, Umemba observed that “year after year, virtually every single biometric including BMI, weight, blood pressure, cholesterol, etc., was better in the group taught by CHWs.”

She concluded that “the more charismatic and identifiable the instructor was, the better the participants did. There are plenty of people taking care of a person’s medical needs but not nearly enough people taking care of a person’s social needs. That’s why I’m such a big cheerleader for CHWs.”

If you need assistance related to food, shelter, healthcare, or financial resources, visit our “Affording Diabetes” resource page. On the right sidebar, you can find a helpful tool that allows you to enter your zip code and connect with a variety of resources in your area.

Source: diabetesdaily.com

Stigma and the Stories We Share

This content originally appeared on diaTribe. Republished with permission.

By Matthew Garza

Matthew Garza joined the diaTribe Foundation in 2020 after graduating from Johns Hopkins University with a degree in Biomedical Engineering. Garza is the Managing Editor of diaTribe Learn.

One of the most powerful ways to change a person’s mind is to have a one-on-one conversation. By focusing on the power of storytelling, diaTribe encourages people to share their experiences as an effective tool to fight against stigma, stereotypes, and the harmful trap of the single story of diabetes.

Diabetes stigma is extremely pervasive and harmful. It exists everywhere, including within the family, school, workplace, and healthcare setting, and it prevents people from seeking care and managing their physical and mental health. In short, this type of stigma – the shame and self-blame that a person might feel for having diabetes – can be a major stumbling block for people trying to manage this condition.

The characteristics and degree of stigma don’t look the same for every person with diabetes. For instance, a person who takes insulin might feel isolated or judged for injecting insulin, taking a blood sugar reading, or wearing an insulin pump or continuous glucose monitor (CGM). For others, stigma may be associated with certain body types or weights. For parents, a sense of stigma might come in the form of assuming blame or perceiving the judgment of others for somehow “causing” their child’s diabetes. And women with gestational diabetes may experience stigma tied to their diagnosis: that they did something wrong or won’t be able to have a healthy pregnancy.

diaTribe believes that addressing these various forms of stigma is an essential missing element of effective and compassionate diabetes care. As a part of this work, we have created the Lightning Talks series, in which experts and community members come together to learn about diabetes stigma and the ways we can address it, and to share stories and personal experiences.

At last year’s Lightning Talks event, we learned about stigma – what causes it, what other movements have done to address it (such as those working on LGBTQ rights, mental health, or HIV/AIDS), and how it manifests itself in the diabetes community and in diabetes care – from five experts and advocates. This year we moved beyond simply learning, to attempting to do something to change it.

Over the past year, we identified a specific method of change, the transformative power of storytelling, as a starting place. Research shows that one-on-one conversations and education are among the most effective strategies to help shift people’s thinking and keep them from making assumptions that lead to stigma. Simply sharing personal stories from people with diabetes about what it’s really like to live with this condition can change the narrative on diabetes in America.

We didn’t come up with this idea on our own. We were inspired to use this strategy after listening to a famous Ted Talk by the author Chimamanda Ngozi Adichie, which we used as the foundation of this year’s program. By listening to Adichie describe the danger of a single story, we were inspired to create a tapestry of many stories by people with diabetes.

“The single story creates stereotypes,” Adichie said in her talk, “and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.”

If you look at the portrayal of diabetes in our culture, it’s easy to see this concept manifested. Diabetes is often painted to be an individual’s problem that is caused by a lack of willpower, unhealthy eating, and inactivity. This single story of diabetes is one of blaming people for being lazy and unhealthy, without any regard for the huge number of uncontrollable factors that can cause diabetes. We encourage you to watch Adichie’s Ted Talk to understand the importance of eliminating the single story.

“Stories matter. Many stories matter,” she said. “Stories have been used to dispossess and to malign, but stories can also be used to empower and to humanize.”

Two of our Lightning Talk speakers, Eileen Opatut and Phyllisa Deroze, shared their stories of living with diabetes in this spirit. Opatut, a former senior vice president of programming for The Food Network, has been living with type 2 diabetes for several decades. Deroze, a blogger, researcher, and advocate in the diabetes community, is the founder of DiagnosedNotDefeated.com and Black Diabetic Info. She was first diagnosed with type 2 diabetes but has since discovered she actually has latent autoimmune diabetes in adults (or LADA).

These women shared their experiences, including their diagnoses, their journey with diabetes, and how they have navigated a world that tells them they are the cause of their condition. They also shared moments that allowed them to break free of the stigma that often felt oppressive.

Lightning

Image source: wittmannstudios

Opatut, describing how her diabetes has progressed, said, “My body doesn’t produce insulin anymore. I have been on insulin for eight years. Is it because I didn’t take it with enough seriousness [when I was diagnosed]? Maybe, maybe not.”

But then she shared something that changed the way she thinks about her own diabetes. “During a casual lunch with my brother, my thin, athletic older brother, he took out some metformin,” she said. “He was diabetic too. And he had been too embarrassed to tell me. It was a big day because on that day, I could finally say to myself, ‘This isn’t my fault’… I could finally get to the business of educating myself and taking ownership of my diabetes.”

Lightning

Image source: wittmannstudios

Deroze talked about the intense sadness, isolation, and shame that she felt upon being diagnosed. She said the “weight of diabetes stigma impacted [me] almost every single day.”

When she was diagnosed in 2011, she began blogging at diagnosednotdefeated.com from her hospital bed. For the next six years she blogged under an alias, embarrassed to identify herself. “The most devastating part about the weight of diabetes stigma is assuming that somehow I did this to myself,” Deroze said. “And that caused me to be silent.”

It took years for her to feel comfortable enough to change her story and write about herself under her own name. “I didn’t get over diabetes stigma. I pushed through it,” she said. “And because I pushed through it, and started sharing my stories, the most amazing things started happening.”

Opatut and Deroze’s stories resonated with many of the audience members, many of whom saw themselves in the experiences the speakers shared.

Lightning

Image source: wittmannstudios

“I completely felt every word that they were saying,” said Julie Heverly, diaTribe’s director of institutional giving, who joined diaTribe’s Community Manager Cherise Shockley in the Community Sessions after the event. “I also went almost six years without really talking about my diabetes… So much of what was shared tonight, even though it wasn’t my exact story, hit very close to home. The stigma that we put on one person with diabetes affects every single person who is living with disease, whether they are a patient, a family member, or even a future person with diabetes.”

Heverly wasn’t alone. Renza Scibilia, a writer and the manager of Type 1 Diabetes and Communities at Diabetes Australia, and T’ara Smith, an advocate and the project manager of Beyond Type 2, also joined Shockley on the Community Sessions panel to share their thoughts.

“I don’t think we can ever hear enough stories about people living with diabetes,” said Scibilia. “Other people’s stories help make my diabetes make sense…When we hear other people’s stories, those feelings of isolation can disappear. Knowing that we are not alone is so powerful.”

Smith agreed. “[Phyllisa’s] story always blows me away, especially when she talks about having to blog under an alias for so long,” she said. “And I think that really goes into the shame and stigma that people with diabetes face. Her story in particular is one that I can relate to myself.”

Sharing your own personal story can have a huge impact. It means that other people with diabetes will see a person that understands their experience, who can help them realize they aren’t alone. And it means that people without diabetes will have a human face for this condition – one that talks back against the single story of diabetes they have been told repeatedly.

Sharing a personal story isn’t the only way to accomplish this, sharing real stories about others can be a similarly powerful tool, and one that friends, family members, and healthcare professionals can partake in.

Image source: wittmannstudios

“What we choose to reflect back to others, the stories we choose to share, can change the model of the world that people around us are constantly forming,” said David Lee Strasberg, CEO and creative director of the Lee Strasberg institute, who was the final Lightning Talk speaker of the event.

He shared tips on how to take stories that we hear and read, and share their core messages with others. He advised that before anyone shares someone else’s story, you need to truly listen to them and understand what they are saying. Getting permission to share someone’s story is also key, as is acknowledging the source of the story (when appropriate). Finally, “When we retell a story,” he said, “use love and understanding, not fear or anger. Having a whole community of strong, empathic, impassioned storytellers is maybe our greatest asset.”

We know from history that retelling stories can be just as powerful as sharing our own. At the height of the HIV/AIDS epidemic in 1987, the AIDS Memorial Quilt was displayed for the first time on the National Mall. Each panel of the quilt represented the story of a person lost to AIDS – a person unable to share their own story. And yet, their friends and family members were able to remember the lives of their loved ones, raise awareness about their fight against the deadly disease, and encourage the world to care about a group of people that so many had written off.

And so, diaTribe wants to encourage you to share your stories, and to share the stories of those with diabetes whom you love and care about. Only then can we dismantle the incomplete single story and create a tapestry of experiences that paint a more accurate picture of what living with diabetes is and can be.

And we want to hear those stories. Send us your story or the story of a loved one to stigma@diaTribe.org and make your voice heard.

Source: diabetesdaily.com

MoreThan a Diabetic: Eritrea Mussa Khan

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

Eritrea Mussa Khan is 28 years old and has had type 1 diabetes for 18 years. She lives in Dallas, Texas with her husband where she works full-time in application development training for a large school district.

Recently, Eritrea joined the team at Diabetics Doing Things as a Content Creator and is a co-host on the podcast. Their new 4-part series “More Than a Diabetic,” features 15 members of the diabetes community who are all people of color. This series focuses on important topics like medical racism, representation in the diabetes community, and how we can collectively as a community do better to support Black and other people of color with diabetes.

Eritrea recently sat down with Beyond Type 1 to discuss the podcast, identity, and diabetes.

BT1: Do you remember what it was like when you were diagnosed? Had you had any prior knowledge of type 1?

Eritrea: No, I didn’t know anything about diabetes at all. I was eight, so I was pretty small. I remember that I sent my parents home when I got diagnosed because I was more worried about my siblings than myself and being like, “Hey, my mom has to get up early tomorrow and take my brothers to school. She has to go home and get some rest.” I took charge of a lot of my own care, but also my parents were foreigners to the country. Their understanding was limited because of language barriers so it was easier for me to take charge and be the translator, not just for them, but for myself so that I could understand everything firsthand. If I needed to take care of myself, I could do that. I was very much a little adult about it.

How did you become involved in the diabetes world and activism?

I started going to diabetes camps when I was really young. I was diagnosed in 2002, and I went to my first diabetes camp that same winter. The next summer I started to go to Camp New Horizons here in Texas with my brothers because it was offered to diabetics and their siblings. At 13, you can become a counselor in training (CIT), and so I became a CIT and then my brothers all grew up going to camp as well so then they became CITs. It kind of became a family thing. When I turned 18, I became a counselor and then I started volunteering every summer. I have a lot of friends with diabetes. I went to a lot of camps so it makes sense that I made a lot of long-lasting relationships. As I got older, I just tried to volunteer my time here and there. Last year in 2020 I met Rob Howe at a Diabetes Meetup in Dallas (pre-pandemic) and later got really lucky to be offered an opportunity to create content over at Diabetics Doing Things.

Do you ever feel burned out while working in diabetes?

I’m lucky enough that I don’t work in the diabetes space full time, and I don’t want to say never but I just feel it would be so hard. I know some people who work full-time in diabetes and seriously huge “Kudos,” because I feel like we already work full time in diabetes. There’s no vacation from this thing! I do definitely go through some burnout. I have a therapist. This is not a humblebrag. I am not okay all of the time, it’s hard out here. But somehow, I manage. I try to go for walks a lot so that I can really just look around the earth and realize that it’s so much bigger than just me and my experience and what I’m going through in my moment. I try to eat good food and enjoy as many small things as I can. It’s the small stuff that makes up the big stuff.

How did you come to create “more than a diabetic” and why did you feel like the space was so necessary for the community?

When Rob and I started talking about me working at Diabetics Doing Things, the conversation was really around doing things differently. There is a type of aesthetic or type of face of diabetes. That face is very common within the online community and I see it all the time, or even faces that look like mine, which is the very consumable Black girl: light skin, curly hair, very cute, blah, blah, blah. And I hate it. It’s ridiculous, Black people and people of color exist in all shades, shapes, sizes, types of diabetes. And their experiences should be talked about, represented appropriately. I wanted to create a space where people were going to have real conversations without mincing words to spare feelings. I thought that it was important for us to be honest, to be clear, and to have these conversations out in the open instead of continuing to talk about having these conversations. Something that’s always really bothered me about how systems of oppression are created is that the conversations about changing them are always being had by the same people who created the problem. It really felt like it was time for these conversations to be centered around the people who are impacted by the societal impact of erasing BIPOC experiences. So, that’s what we did.

When do you feel most empowered and who in your life contributes to that?

I always feel supported at home. I have the best husband ever who lets me go on hour-long rants about things and tells me, “Hell yeah.” Having the space and sometimes the bravery to say things that might make some people uncomfortable is crucial. I also work somewhere really great, and Rob is a really great person to work for. I always feel like Diabetics Doing Things is here to tell the truth, even if those truths may be a little bit uncomfortable sometimes.

Do you have a message for anyone that’s struggling with discrimination or racism?

I think we’re all struggling. I think every single person is struggling. But maybe something we could all think about more is just being intentionally kind. There’s a difference between being nice and being kind. We all need to be a little bit kinder and think more about the other person’s human experience. We need to be a little bit more intentional with that kindness. If we are being asked to speak somewhere, questions need to be asked. Who else is speaking? Am I taking up space that could be for someone else? Are all groups being represented here appropriately? Are we making this accessible for everyone?

It’s about being kind, being intentional, opening up doors for other people other than just ourselves. I know that we all want to get ahead, I know we all want to do well. That’s not what I’m arguing. I’m just saying that we can’t all do well when we’re ignoring the needs of other people in our community. You cant be an advocate for diabetes and then ignore BIPOC with diabetes or LGBTQ people with diabetes or type 2 diabetics. We all have diabetes. We all need to help each other.

What’s next for you? The podcast?

Diabetics Doing Things is still doing takeovers on Mondays. We do about two takeovers a month. It’s called “Doing Things Day,” and we hand over our account to somebody somewhere and they take us through a day in their life with type 1 diabetes. We’ve gone to places like Palestine, Lebanon, London, Georgia, Tennessee. We get to see a sliver of a moment in someone’s life, just a day. I really enjoy these takeovers because they allow us to go all over the world. It’s going to be really awesome. We’re covering some really cool new people in March.

For now, I know I am doing some more producing at Diabetics Doing Things, and I’m not really going anywhere. I’ll be here working on stuff, brainstorming what my next thing is.

I’m also working on a project that I’m really excited about. I’m looking for diabetics in the media. I love projects like these because I so enjoy going down a rabbit hole. Catching up on Steel Magnolias and Scrubs has been a treat. I’m really excited for what 2021 will bring to Diabetics Doing Things and what season two of More Than A Diabetic will look like.

Any last thoughts?

For anybody listening to any of these episodes, please just listen. That’s it, have an open mind. If you find yourself feeling something while listening, I invite you to lean into that feeling and explore it. This is not about just one singular person. What the ultimate goal of More than a diabetic was is to shed a spotlight on an issue that impacts all of us. It’s about a shared community experience that so many people who look like me, and who don’t look like me, have gone through.

Source: diabetesdaily.com

Going Virtual: The Future of Diabetes Care

This content originally appeared on Beyond Type 1. Republished with permission.

By Todd Boudreaux

Ashlyn Mills is a physical therapy assistant in an outpatient setting in Florida, working with people with orthopedic and neurological disabilities. She was diagnosed with type 1 diabetes when she was 19 years old. Ashlyn recently started using DreaMed’s telehealth platform to see an endocrinologist, and spoke with Beyond Type 1 about the shift to virtual care.

Beyond Type 1: To start, can you tell me about your diagnosis, and how you originally managed your diabetes?

Ashlyn Mills: I had a strange diagnosis, it was caught a little bit early. I was already being followed by an endocrinologist for some other issues and we started noticing some higher blood sugars on labs. My A1c wasn’t incredibly high so they put me on a Dexcom and started monitoring my blood sugar so they could see what kind of patterns I was experiencing. My fasting blood sugars crept up higher and higher and they went ahead and added basal insulin at that point. I was insulin dependent about three months after my diagnosis.

They diagnosed me with type 1 from the start. They did say that it looked like a latent onset (LADA), but it was pretty clear that it was type 1 from the get go. I was using insulin pens at that time.

Tell me about your treatment since diagnosis.

I live in a rural area in Florida. There’s not an endocrinologist around here. I had been seeing an endocrinologist at the Mayo Clinic in Jacksonville, which is about a two and a half hour drive for me, and that was just because that’s who came recommended by my primary care physician. I was diagnosed at the Mayo Clinic and followed up with endocrinology there for the first two years after my diagnosis. The nurse practitioner that I was seeing there actually left and came to a clinic that was about an hour and a half from my home, and I had a good rapport with her. I went ahead and followed her.

Her and I had come to the understanding that it was difficult for me to see her every three months, so instead I saw her every six months. It became a little bit of an issue for me being able to talk with someone in between if I had issues, which is how I found DreaMed. I could find somebody to bridge the gap between those six months that I’m going without seeing a doctor in person. Now, I’m able to communicate with someone whenever I want to.

How have you been keeping up with your job as a healthcare worker living with T1D during the pandemic?

Florida did a stay at home order back in March. About mid April my employer decided, “We’re going to send everybody who is high-risk home.” I worked from home for about two months and then the numbers started looking better and they sent me back to work. Now, I’m working in the clinic every day and it is nerve wracking. I’m still working but I’m quarantining from my family right now because I was exposed at work.

I go through phases where I feel like I would be fine if I got it but then I have bad blood sugar days and I’m like, “This is it. If I get COVID I’m doomed because my blood sugar was over 200 mg/dL all day today.” Overall, I think I would be okay but I do worry about being hospitalized. I think that’s my biggest fear with the whole entire thing is ending up in the hospital with no family there to be with me. I pray every day that I stay well but I am working and the numbers in our county are rising quickly

How did you find out about DreaMed and what was that process like getting started?

When I was sent home and started doing telehealth with my patients I realized this is easy, there shouldn’t be any reason why I can’t do this.

At the time my endocrinologist’s office was not offering telehealth appointments, even in the midst of COVID-19. I started doing a little bit of research and found DreaMed. I went on the website and signed up for more information. My experience as a provider doing telemedicine is what led me to push to try to find someone that could do the same with me as a patient.

How does DreaMed work?

They asked me what state I lived in and they connected me with an endocrinologist here in Florida, Dr. Kava. I set a telemedicine appointment with her and she spent about an hour with me on that first call. I think you can view it as a replacement service for your current endocrinologist or just an add-on to your current care.

Was it surprising your appointment lasted for an hour?

Dr. Kava would have spent as long as I wanted her to with me. My normal appointments in the clinic, I drive about two hours to be seen for maybe 10 minutes. Most of the time there’s not too much to discuss at those appointments you just make a few changes, but she asked all about my personal life, including my mental health during the pandemic. She really seemed invested in me as a person, too, not just diabetes.

She nitpicked my data because I told her I’m a little bit of a control freak. She said, “If you want tight control I’ll help you.” She spent a long time combing through all of my graphs and figuring out what we could do to get things even tighter than they already were.

Has any diabetes provider before Dr. Kava asked about your mental health?

That’s the first time I recall that happening. When I was first diagnosed I had a diabetes educator talk with me about mental health and diabetes to prepare me for what may be to come with my mental health. They assume if your control is good you’re doing okay with your mental health, but that’s not always the case. I don’t necessarily quit caring for myself when I feel burned out but that doesn’t mean I’m not struggling mentally with it.

It was Dr. Kava spent a good bit of time talking with me about mental health and diabetes and how my mental health was doing with COVID-19 and all of that so I was very impressed with that.

Were there any other specific suggestions that stuck out to you?

Most adult endocrinologists seem stuck in the stone ages a little bit. Dr. Kava looked at my data and she said, “You’re on a closed loop system. The system is going to suspend you if you’re going to go low. If you want to stay below 140 or if you want to stay below 120 I can help you get your settings there.” That was the first time that I had ever had someone be willing to be that aggressive with my care, but I felt like she was totally game for whatever I wanted her to help me do.

Do you think that you’ll continue using DreaMed?

Yeah, ideally I would like something to bridge the gap right now. Although my endocrinologist has started offering telemedicine I’d like somebody that I can talk with through DreaMed and not feel like I’m bothering. When you’re bothering your endocrinologist a lot of times you’ll get an unexpected bill; it would be nice to pay the monthly fee and have somebody at my fingertips whenever I need them. If my endocrinologist quit offering telemedicine I would love for DreaMed to replace my current endocrinologist. As much as I love her it’d be nice to do telemedicine and not have to drive two hours to be seen by someone.

Do you have any advice for someone living with type 1 who doesn’t currently have access to a local endocrinologist?

I just think if anyone’s trying to figure out what to do in the time of pandemic or just tired of driving to see an endocrinologist as frequently as they do, I would suggest looking into DreaMed. They’re currently offering a three-month trial. I have no dog in the fight, I’m not being compensated to say anything about them. You have nothing to lose. They are very honest and I think it’s worth giving a try.

Source: diabetesdaily.com

Top Ten Myths About Peer Programs

I have been living with type 1 diabetes for almost 30 years (this October 19th marks my 30th diaversary) and I’ve worked in the diabetes industry for over 20 years. I’ve primarily focused my career on community education and peer programs and have seen time and time again how beneficial they are. But I’ve also heard, for a variety of reasons, that many are reluctant to take part in a community or join a group. And we think it might be due to some misconceptions or myths about peer programs. Here’s our list of the top ten myths about peer mentorship!

Myth #1: My healthcare team is the most important part of my diabetes management. 

YOU are the most essential part of your diabetes management. You manage your diabetes for 525,600 minutes per year. While your healthcare team is vital, research suggests that a peer community is just as important as an educated healthcare team.

Fisher et al. conducted a systematic review that analyzed data from peer support for diabetes management studies and concluded that,

“across diverse settings, including under-resourced countries and health care systems, PS [peer support] is effective in improving complex health behaviors in disease prevention and management including in diabetes.” 1

If you visit your diabetes healthcare provider (HCP) once per month for 20 mins, that’s only 240 minutes per year. Yah, it’s all you. Give yourself a high five – this is hard work! Regardless of the type of program, a peer community can help you in so many different ways. Emotional support, stress relief, guidance, learn to advocate for yourself, exposure to various management tools, techniques, devices, and medications, and the list goes on! Being around like-minded people going through the same thing – just.makes.sense.

Myth #2: I don’t need it – my diabetes is well managed. 

That’s awesome and we’re excited to hear that! Over the years, I’ve often heard the comment, “I didn’t know I needed it until I was there.” A peer program, whether that be an event or group, can fill a gap you didn’t know existed.

We can learn things from our peers that we just can’t from our team of doctors and nurses. For example, you might not be aware of specific tips and tricks that people with diabetes use concerning their devices, medications, insurance plans, or assistance programs. Peer groups can also help us fine-tune our diabetes management in different ways than our healthcare teams can. They are there when the going gets tough, and you need someone who “gets it.”

A good friend of mine, doing well and happily managing his diabetes, had no desire to use CGM (continuous glucose monitoring) technology. He attended an event and saw his friends using one and realized he could fine-tune things even more. It was because he saw others using it and was able to speak to them about their experiences; he decided to give one a try. Six years later, he’s still using one and doing better than ever.

Myth #3: I only need a peer community or mentor when first diagnosed.

Having someone walk you through what to expect or be there with you as learn can be impactful. But diabetes is lifelong, and that means it can change over time. Life ebbs and flows, and so can our management and ability to focus on it. Having people who “get it” and you can turn to can be beneficial at any stage!

Myth #4: A peer program is all about complaining. I don’t want to be part of a pity fest. 

We hope not! I know in my peer group I can post funny anecdotes (those things that only people living with diabetes would get a laugh out of), ask questions, figure out what to make for dinner, but yes, also vent if I need to.

The way I’ve managed my diabetes has changed over time throughout my life, and my peer group has been so helpful and empowering along the way. We hope our peer mentorship program will be a source of positive relationships and interactions.

Myth #5: My diabetes will be reversed if I join a mentorship program.

We wish this were always true. According to a small study 3, people diagnosed less than four years ago with type 2 diabetes found that drastic calorie reduction normalized blood glucose and insulin resistance. Thus, stopping diabetes in its tracks. However, this study did not include anyone using medication and had strict exclusion criteria. Therefore this result may not be true for everyone. Alongside lifestyle changes (nutrition, exercise, sleep, and stress reduction), sometimes medication is needed to help the body work more effectively and efficiently. Joining a program or group can help you find the resources and support you need to make those necessary changes and stay the course.

Myth #6: I will be shamed or judged for my choices or medications I’m using or not using.

We’re sorry to hear if that’s the experience you’ve had previously! For many communities and programs (including Facebook groups), most have guidelines each person must adhere to in order to participate. In our forum, there are Community Guidelines (rules for posting). Our Peer Mentorship Program encourages empowering language and not “shoulding” each other (“You should or shouldn’t do this.”) Instead, we speak from our own experiences, what has and has not worked. Each person is on their journey, and it takes time to reach your goals. What works for one person doesn’t necessarily mean it will work for you (diabetes would be SO much easier if we could all do the exact same thing and get the same results!) Most times, you’ll need to experiment to find the combination of things that work for you, whatever those things may be. One step forward at a time.

Myth #7: It’s too much time. I don’t want to spend more time talking about diabetes.

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We totally get it! Joining any program involves a time commitment, but what you put in, you get out. We know that talking about our experiences creates a sense of connection and belonging, which can help us cope during difficult times. It can also be more efficient to talk about options and choices with real-life users before starting something new or making changes. Sharing what is going on, asking questions, learning from other’s challenges, and helping others can pay you back in dividends.

Myth #8: These types of programs don’t work.

We hope they do, and research shows they do work! Peer programs are an option or piece of a larger puzzle. It’s one area that can help you manage your diabetes, but you have to show up and participate. Specifically, in the Diabetes Daily peer mentorship program, we ask that you set some goals to work towards them and use the community for help. You create the goals, and they can be as small or grand as you like.

See what our previous program participants had to say:

“I really enjoyed my time chatting with others and seeing how others managed their diabetes. It [the program] gave different perspectives but I always felt very supported. I felt I also helped my mentor with their diabetes.” 

 

“I learned so much from my mentor! He had tons of knowledge and I changed a lot of my lifestyle based on information from my mentor and the group.” 

 

“I learned about diabetes technology that I would have not known about.” 

 

“I was very introverted and not ready to accept my diabetes. This program made me realize how important it is and that I can’t ignore it.” 

Myth #9: All of these programs are the same.

Every program is different and unique. Take Weight Watchers; for example, it previously focused on in-person group weigh-ins and meetings. Now, the program uses an app and online support to help members reach their weight loss goals. Alcoholics Anonymous (AA) is composed of in-person group meetings and a one-on-one sponsor relationship. Cancer support groups often meet in person with a social worker, mental health professional, or facilitator to discuss their experiences, feelings, and emotions. Diabetes Daily has an anonymous online forum where you can freely post your questions and answer other people’s. The re-launch of our mentorship program is more similar to AA, where you have a partner to connect one-on-one with and group sessions where you can learn from others’ experiences and stories.

Myth #10: It’s a diabetes education program.

Yes and no. It’s what we call peer support and peer education. By listening to others’ successes and their challenges, you learn about real-life experiences. For example, it’s invaluable to hear about a medication’s common side effects and address these with your doctor before trying something new. Not everyone will react the same, but we know sharing your tips and tricks can help others. Continuing to work with your healthcare team is vital as they are the ones who will address medications and any changes to those.

To learn more or join our peer mentorship for people living with type 2 diabetes, head to our Mentorship page. Registration closes August 28th, 2020, and the program begins September 1st. We hope you’ll join us!

References

1. Fisher, EB, Boothroyd, RI, Elstad, EA; “Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews” (2017) Clinical Diabetes and Endocrinology DOI: 10.1186/s40842-017-0042-3  Accessed: 8/21/2020 https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-017-0042-3  

2. Warshaw H and Edelman D; “Building Bridges Through Collaboration and Consensus: Expanding Awareness and Use of Peer Support and Peer Support Communities Among People With Diabetes, Caregivers, and Health Care Providers” (2018) Journal of Diabetes Science and Technology DOI: 10.1177/1932296818807689 Accessed: 8/21/2020 https://journals.sagepub.com/doi/full/10.1177/1932296818807689#

3. Lim, E.L., Hollingsworth, K.G., Aribisala, B.S. et al. “Reversal of type 2 diabetes: normalisation of beta cell function in association with decreased pancreas and liver triacylglycerol” (2011) Diabetologia 54 DOI: 10.1007/s00125-011-2204-7 Accessed: 8/21/2020  https://link.springer.com/article/10.1007/s00125-011-2204-7#citeas

Source: diabetesdaily.com

Embracing Community in Times of Crisis

This content originally appeared on Beyond Type 1. Republished with permission.

By Erin McShay

Sometimes in life, it takes something bad to happen for us to pause and appreciate how good things once were. I used to think of our lives as before and after our Sam was diagnosed with type 1 diabetes. Fast forward twelve years: he’s a senior in high school and the Corona virus is sweeping the country. The cacophony of chaos in the world is now pulling our attention into dark territory, channeling voices of fear and uncertainty. It’s almost as if time has slowed down to a crawling pace; giving us the chance to inhale and catch our second wind.

Community

Image source: Beyond Type 1

Always a Battle

Dealing with any chronic illness is an arduous job packed with hundreds of additional decisions to make a day. Ordering supplies, planning and packing become essential, life-saving chores. We take the burden in stride, but then become our harshest critic when thing go wrong. From personal experiences, I’ve learned that dwelling on our missteps serves no one. Remember that Billy Joel song? “We’re only human, we’re supposed to make mistakes.”

Just last year I made a doozy when we sent our two teenagers to Houston to visit family – I forgot to pack additional insulin pump cartridges for our son. Halfway into the trip, Sam called to say he ran out of cartridges. We’ve taken dozens of trips throughout the years, driven and flown across the country, camped in remote areas, and I’ve never forgotten anything. I told him to check again. We went over the list together; extra insulin, needles, blood sugar meter, back up meters, test strips, infusion sets, ketone strips but no cartridges. In a cupboard, I found the sandwich baggie of them that somehow got left behind. Anyone who’s ordered these types of supplies knows that you can’t just walk into a pharmacy to get more; in fact, you only have a few options and they all take twenty-four hours to ship. It didn’t matter how many times my son and husband told me it was okay: two thousand miles away, I spent the entire night consumed with guilt and worry, crying on my husband’s shoulder. Sam spent the night waking up every two hours to do blood sugar checks and give himself shots. He learned a hard lesson and so did I, but meanwhile we still had to find cartridges.

Community

Image source: Beyond Type 1

Somehow, on a hunch and a prayer I managed to look up a Facebook/Beyond Type 1 friend whom I’ve never met – and asked for help. It was a miracle really. I was a complete stranger to her, she could have said, ‘Sorry,’ but instead this angel went to extraordinary measures for us by reaching out to her community to find me the specific cartridges I needed for Sam’s pump. Her son had a different pump, but a friend of her’s (another angel) met Sam and my sister-in-law to give them an exceeding amount, beyond what he needed. I paid her back when I got her address, but at the time I don’t think they knew the depth of my gratitude. Not to mention the many thanks to my sister-in-law for driving Sam to another county, and our family in Houston for taking such good care of him.

When You Need Help, Ask

The chances are in your favor in the type 1 community with a million out-stretched hands, and general well-wishers ready and willing to offer not only advice, but whatever you need to help you get by.

I’m embarrassed to say I ran out of supplies once before the Houston trip. Not long after Sam was diagnosed, we depleted our infusion sets before our new order arrived. Luckily a neighbor, whom I met through a friend, had the same insulin pump as Sam, and gave us a few loaners. Another neighbor, a type 1 diabetes (T1D) dad who lived around the corner from us, went out of his way to offer advice and help us when Sam was first diagnosed. We were so scared in those early years and his helpful words still bring me comfort years later.

Get to Know Your Neighbors

Once, I bonded with a fellow writer at a conference, where I divulged that I had a son with type 1 diabetes. We became fast friends after she told me she had developed late adult onset T1D. One night, when my son’s pump stopped working, I called her in tears. My husband was out of town and I couldn’t get Sam’s pump to prime. She drove over to my house at ten at night – because these problems never happen in the middle of the day – and got the pump working again.

I wouldn’t have known these angels to receive help from them, had I not been as forthcoming about Sam’s disease. Nor would I have met them if I wasn’t on Facebook or involved with my community. You don’t realize these tiny miracles for what they are, until after the fact. If not for their help, I would probably be in a strait-jacket staring at a cement wall somewhere. Instead, I am now willing and able to pay it forward anyway I can.

Sibling

Image source: Beyond Type 1

As a writer and avid reader, I peruse tons of articles and social media sites a day, and if there is one thing I’ve learned, it’s to think before you say or post something. Negativity helps no one. I’ve found that depressing, bleak posts can linger in your psyche long after you’ve read them. Your views can really impact others. On the other hand, knowing how meaningful certain tweets can be, spreading love and encouragement, cannot only change a person’s day but has the power to alter their lives.

One kind word can mean the world to someone. Life is hard, especially with a chronic illness and there is no question diabetes stinks, but what a wonderful support system we have in place within the T1D community! People can be quite beautiful, and they have a wealth of knowledge on a much deeper level sometimes than our medical professionals.

Pay It Forward

I heard once that Jackie Kennedy Onassis said that motherhood was the most important job on earth and if you mess that up, whatever else you do doesn’t matter very much. My son and daughter are edging their way to adulthood now, and I hope that they’ve learned from my mistakes and watched how I forgive myself. I hope they’ve learned from the tiny mercies shown to us, and that when someone’s in need, you offer a helping hand or an encouraging word without blinking. I hope they stand up to injustice when they see it, and become advocates for the less fortunate, like those struggling to afford insulin.

As I reflect in this trying time, I see that through Sam’s diagnosis, we’ve learned and grown so much because of it. It’s made us who we are – all of us. And though this is a flawed, imperfect world, we truly have a family beyond our own. No amount of social distancing can diminish how interconnected we truly are. The silver lining through this all is that we have each other.

Source: diabetesdaily.com

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