In a series of 12 episodes, Podder™ Talk is featuring interviews between professional snowboarder Sean Busby and inspirational people in the diabetes community. In this episode of Sean Busby’s Heroes, Sean talks with nine-year-old Taite and his five-year-old brother Trevor about their lives with type 1 diabetes. Taite and Trevor are busy little guys, playing baseball, snowboarding with Riding on Insulin, and being advocates for the type 1 community.
ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.
Advocacy is the big buzzword in the medical world today. You might be urged to advocate with Congress about insurance coverage, diabetes research funding and workplace issues. You are told to advocate for yourself with your doctors, your diabetes educator and your teachers and coworkers.
It can all seem a bit overwhelming. Where do you start? What’s most important to you?
I got my first taste of advocacy in the 1970’s when, as a teenager, I went to lobby on Capitol Hill with JDF (before it was renamed JDRF). We visited congressmen to ask for funding for diabetes research and tell our stories. I also “published” the JDF Nassau/Suffolk county newsletter (this is WAY before personal computers and publishing software – the old fashioned way of typing an article on a typewriter and then cutting and pasting it onto pages!) … just to spread the word about events and news in the diabetes world.
So where do you start?
Nowadays, I’ve gotten involved with the diabetes online community (DOC), which is a very vocal group of T1D’s who write, blog, podcast, write letters and lobby in and for the diabetes community. Some of the more active and effective sites include:
- DPAC: (diabetespac.org) – The Diabetes Patient Advocacy Coalition, co-founded and run by Bennet Dunlap and T1D Christel Marchand Aprigliano, as an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC “seeks to ensure the safety and quality of medications, devices, and services; and access to care for all Americans with diabetes.” It’s a powerful group and certainly worth a poke around their website.
- diaTribe: (http://diatribe.org/) – a patient-focused online publication, part of The diaTribe Foundations, whose mission is to improve the lives of people with diabetes. “diaTribe seeks to empower our readers with useful, actionable information that gives them hope for a better future, and helps them live happier and healthier lives. Our tag line is ‘Making Sense of Diabetes (http://diatribe.org/about-diatribe).’” Regarding advocacy, they offer a column called “Moving the Needle”, which covers advocacy happenings around the world.
- Diabetes Hands Foundation (diabeteshandsfoundation.org ) – a non-profit organization which offers Diabetes Advocates (diabetesadvocates.org), whose mission is to connect people touched by diabetes for positive changes, so that nobody living with diabetes ever feels alone. They offer a weekly advocacy newsletter, collaboration in advocacy initiatives (such as Spare a Rose, Save a Child – SpareARose.org), scholarships to attend diabetes conferences, micro-grants to support diabetes advocacy projects, inspiring advocate stories and much more.
- DiabetesMine (www.healthline.com/diabetesmine) is, as they say, a “gold mine of straight talk and encouragement.” In the advocacy world, Amy Tenderich and Mike Hoskins report on FDA talks with the diabetes community, the cost of insulin, access to insulin worldwide and much, much more.
AND THEN … there is advocacy that has NOTHING to do with diabetes. You could choose to be involved in causes that touch your heart or your family or your pets or the environment. Dig around the web for groups that advocate in the area of your passion … or start your own crusade.
I had the opportunity, as a scholarship winner to the DHF MasterLab Advocacy 2016, to hear Scott Johnson and host of Diabetes Social Media Advocacy Live DSMA open the meeting with a talk about embracing
your inner advocate.” He says we all have a “fire inside us … and that life with diabetes is a huge puzzle with missing
pieces. By exploring and challenging our ‘puzzle view’, we can truly make a difference.”So, as he says, “When you feel something click into place, or you notice a tug of curiosity, or a surge of frustration… pay attention! That is your fire talking to you, and it’s hungry. Just take it all in, then follow your fire and feed your fire.” Maybe it’s just a path for you to become aware. Maybe it’s a call to action to share with others. Just maybe it’s a call to take some action. Be sure to listen to it and follow it, wherever it takes you.Let us know where it leads you!
ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.
Advocacy is the big buzzword in the medical world today. You are urged to advocate with Congress about insurance coverage, diabetes research funding and workplace issues. You are told to advocate for yourself with your doctors, your diabetes educator and your teachers and coworkers.
Sounds like just one more task to add to the pile of things you must do to live with diabetes. No, thank you, I already have enough to do, between testing and bolusing and counting carbs and exercising and changing Pods and changing sensors. Phewwwww … enough already! Right?!
Well, no, not really. It’s really not all that hard … and it’s really important. After all, who’s more important to your own life than you? It is survival.
Let’s break it down into what you can do and what will make your life better.
MOST IMPORTANT: Advocate for yourself! How, you may ask?
When you go to see any of your healthcare professionals, be prepared:
- Before your appointment
- Write down any questions or health problems you need to discuss
- List what you expect to come away with, after the appointment
- Bring a list of your medications and a pad of paper/pen (or notepad on your smartphone)
- Check if you need updated prescriptions for medications or Pods
- Make sure you know how to reach your provider if you have further questions
That’s it … simple! You are prepared and organized, which helps you get your needs met and helps your healthcare professional understand your needs as well.
You can also advocate for yourself within your family and friends.
- First, think about your life with diabetes and what you might want from your family members, friends, co-workers, by way of emotional support and actual actions and under what circumstances.
- Do you want them to listen to you when you are frustrated or scared?
- Do you want them to just say, “Awwww, yeah, that’s tough. I feel you.”?
- Or do you want them to help you solve some struggle you are having?
- Then, and this is a big next step, you need to educate them on what you need from them.
- If you just want a sensitive and caring ear, tell them that sometimes you might just need to vent. Then ask them if they would listen and show compassion without having to actually do or fix anything.
- If you want them to be alert for certain problems (low blood sugars, high blood sugars or simply unusual behavior or unattended alerts), you will need to educate them.
- If you might need their help in placing a new Pod, you will also need to show them and train them.
How to educate your advocates:
- First ask if they’d be willing to help you from time to time.
- If they say yes, teach them what they need to understand about your needs and what actions you need them to take.
- Role-play with them so that they feel comfortable with what you are asking them to do.
- Give them the tools to make them successful:
- Fast sugar/glucose tabs
- Glucagon (and teach them how to use it and practice)
- A list of phone numbers for them to call
- How to stop, fill and start a new Pod
- Check in again with them about how comfortable they feel about helping you. Ask them if they have any questions.
- Review and practice from time to time. You do this all the time, each and every day. But it continues to be new to them, until they need to step in for you.
Just a short story about my early life with diabetes. I was diagnosed at age 11, in the 5th grade. There were no blood glucose meters, only urine testing (pretty useless for low blood sugars). When I would experience a low blood sugar, I was coached to tell my teacher, who then told my best friend, Tina, to walk me to the nurse’s office, where I was given orange juice.
I thought that worked pretty well and also allowed Tina to get out of the classroom for a short bit. Many years later, Tina shared with me that she used to be terrified. She didn’t understand what was going to happen and how sick I was … and worried that it was all her responsibility. That’s a large burden on an 11 year old without proper education and appreciation. Yes, I’ve thanked her and apologized for causing her concern. All that could have been made easier with a better explanation and giving her freedom of choice to help.
Coming soon: Part Two: Advocacy and the Bigger Picture
When a person is diagnosed with diabetes, they get directives from their endocrinologist and Certified Diabetes Educator (CDE) on how to manage their diabetes. But successfully managing diabetes goes way beyond insulin-to-carb ratios, basal rates and carb counting. Finding support from others who “get it” can help us on levels far beyond what a medical professional can offer. One organization that is helping women of all ages with all types of diabetes find support is DiabetesSisters. Brandy Barnes is the founder of DiabetesSisters and author of the book “A Woman’s Guide to Diabetes: A Path to Wellness”, which she co-wrote with Natalie Strand. Check out my Q&A with Brandy below, as she shares more about DiabetesSisters and how women can find support.
Leighann: Why did you start DiabetesSisters and how has it grown?
Brandy: I started DiabetesSisters in January of 2008 after my own unsuccessful experiences in trying to find other women with diabetes to talk through problems and share life with. Throughout college and early adulthood, I dreamt of a friendship with another female who understood what life was like with diabetes. Unfortunately, I was not able to find it.
I would say that I felt the loneliest with my diabetes during my pregnancy with my daughter in 2004-2005. I asked my endocrinologist and high-risk obstetrician to connect me with another woman with diabetes who had been through or was currently going through a pregnancy, but they were not able to do so. I searched local resources and the Internet and came up empty-handed.
It was in 2007 when I felt a strong pull, or maybe a nudge, to do something about the lack of resources and community available to women with diabetes. I launched the organization’s website in January 2008 with just myself and one volunteer blogger. Since then, the organization has grown tremendously serving over 12,000 registered members through annual conferences being held (sometimes two conferences per year), 47 trained PODS (Part of DiabetesSisters) Meetup Leaders holding monthly support groups in over 32 cities throughout the U.S., and a website that serves over 240,000 women with diabetes and their families annually. In the last year, we have also introduced the very successful DiabetesSisters’ Life Class Webinar Series. We have many more new and exciting projects in the works for 2015, but I can’t tell you about them just yet!
Leighann: What type of support do you feel that women with diabetes need that they aren’t necessarily getting from their endocrinologist or CDE?
Brandy: Most people with diabetes agree that hearing a healthcare tip or suggestion coming from a person with diabetes sounds very different than one coming from a person not living with diabetes. There’s just a certain amount of validity that comes with living with the disease 24-hours-a-day, seven-days-a-week. And, while it’s wonderful to find anyone with diabetes – male or female – to talk with openly about your diabetes, there are still some areas of diabetes that men just can’t relate to. There’s just a certain comfort that comes from talking to, sharing with, and learning from another woman with diabetes – about how the hormones of puberty, pregnancy, menstruation and menopause affect her. The incidence of eating disorders, depression, body image issues, cardiovascular disease and osteoporosis are much higher in women with diabetes than their peers. These are also topics that women often find it easier to discuss with their peers who understand what they are going through. That doesn’t mean that men, endocrinologists or CDEs cannot provide value to women with diabetes. It merely means that the value they provide is different (and complementary) to that of other women with diabetes.
Leighann: How can women with type 1, type 2, LADA and gestational diabetes support one another even if they have different types of diabetes?
Brandy: For far too long, people with different types of diabetes have been segregated. Some have even been led to believe that they have a completely different kind of illness. At DiabetesSisters, we stand firm on our belief that more can be accomplished together than separately, and that each woman has the opportunity to learn from another woman with diabetes – no matter what age, type or length of time living with the disease. We all come to the table with our own tips and tricks, but in order to gain all that there is to be gained, you must come to the table with an open mind.
We typically start off our conferences by addressing this question head-on. It’s often the “elephant in the room,” but once we start pointing out all of the things that people with various types of diabetes have in common (e.g., they must be aware of carbohydrate intake, must check blood sugar levels, must understand how exercise affects blood sugar level, must know what to do when blood sugar is low and when it’s high, etc.) rather than focusing on how they are different, it becomes very clear to attendees that it’s not about what type of diabetes you have. It’s about having an open mind and being willing to learn from others who talk the talk and walk the walk on a daily basis.
I have seen MANY women with type 2 diabetes who were fearful of going on insulin gain a deeper level of understanding about the value of it and even tell their physician that they are ready to start it. Likewise, I have seen many women with type 1 diabetes walk away from discussions with women with type 2 diabetes with a much better understanding of insulin resistance as well as an empathy for the blame and shame that many women with type 2 diabetes face on a daily basis.
Leighann: There are several ways that diabetes has been represented as a cause including the grey ribbon with a red blood drop and the blue circle. What is the Orange:Will campaign and why have you chosen the color orange to represent women with diabetes?
Brandy: We actually chose orange back in 2008, because at that time there wasn’t a unifying color or any kind of active movement to create one among those with diabetes. Orange represents power and courage and it is also welcoming, which I felt was very fitting of our membership. I think it was around 2010 when the blue circle gained popularity among people with diabetes as a unifying symbol due to the International Diabetes Federation. As an organization, we also stand behind this symbol/color (blue circle) mainly because it has been such a unifying force and we strongly support anything that brings people with diabetes together for a positive reason. While we still celebrate orange as the color that represents DiabetesSisters and women with diabetes, and we encourage women to wear the color at our events, we also stand strongly behind the blue circle.
Leighann: How can women find more local support if they aren’t able to attend one of the weekend conferences?
Brandy: The PODS Meetup Program is now available in over 32 cities throughout the U.S. PODS stands for Part of DiabetesSisters and it’s our way of bringing women with diabetes together on a monthly basis in an organized fashion to discuss topics of specific interest to them. Each month has a theme and an educational module on this topic is provided to the PODS Leaders. Our monthly newsletter is also focused on the same monthly topic and we often have a Life Class Webinar on the same topic during the month.
PODS Meetups meet in a variety of locations, some in leaders’ homes, some in local coffee shops, some at the YMCA and some at the local library. The idea is to meet the women with diabetes in the community where they are and provide the information and support they have been craving, so that they can live happy, healthy lives with diabetes. Each Meetup typically lasts two hours and, while a portion of the meeting is devoted to the educational module, a portion is also dedicated to socializing and getting to know one another. Life is hard enough! Having the ongoing support of friends walking along side of you and supporting you in your diabetes journey can make a huge difference. NO ONE can do life alone – especially not with a chronic illness like diabetes.
Leighann: Besides the Weekend for Women conferences and PODS Meetups, does DiabetesSisters offer any online support or education?
Brandy: Absolutely! We have women with type 1 and type 2 diabetes blogging and sharing their experiences on our website at all times. We also have a woman who is going through pregnancy and diabetes blogging at all times. All of these blogs are archived, so a woman who is thinking about pregnancy could literally sit down in front of their computer and read through a multitude of women’s experiences with diabetes and pregnancy, and walk away with a solid knowledge base of what to expect during and after pregnancy.
We also have an excellent team of medical, behavioral and legal contributors who contribute monthly articles on our website. We also offer “Educational Briefs” videos on a variety of topics, from eating disorders to journaling. As I mentioned previously, we also offer Life Class Webinars which are announced in our monthly newsletter and available in the archives on our website.
To learn more about DiabetesSisters, Weekend for Women conferences and PODS Meetups, visit the DiabetesSisters website.