A Family of 1 Million: Beyond Type 1’s Incredible Community
Living with a chronic health condition like Type 1 Diabetes requires a level of responsibility that can be incredibly challenging for people of all ages and temperaments. There is no cure yet, and no breaks for a person living with Type 1 diabetes, who must carefully weigh every-day decisions from a position of rigorous understanding of their disease. It’s tough work, and you’d be hard-pressed to find a Type 1 diabetic (T1D) who isn’t made of sterner stuff than your average bear. But just as trees made of even the strongest wood need deep roots to weather a storm, people need connection and social support from a strong community to deal with life’s heavier burdens in a healthy way.
Beyond Type 1 is a nonprofit organization dedicated to global education and advocacy of Type 1 Diabetes, as well as providing resources and supporting those living with the autoimmune disease. Beyond Type 1’s Diabetes Online Community (DOC) is a network of individuals impacted by T1D who share their experiences, knowledge, and support with one another across multiple forms of social media. Over 1 million strong, it is the fastest growing Type 1 Diabetes community on social media in the world. Considering the everyday challenges presented to those with T1D and their families, the resources and community support offered by the Beyond Type 1 community are life changing.
Let’s take a look under the hood and see just how much of an impact this community has on its members.
The Impact of a Strong Community
Mental and Physical Health
Having a community to rely on can make a world of difference to those managing a lifelong chronic disease, starting from the simple realization that they are not alone in their struggle. Less than 1% of Americans have T1D, so the odds of meeting someone by chance that understands the day to day struggle is slim. This notion highlights the importance of having an online community that can be accessed from anywhere on the planet.
This is an excerpt from an article written by Evan Soroka, which details the emotional cost of living with a chronic illness. Diagnosed with T1D during adolescence, Evan is one of many T1Ds to share her experiences through Beyond Type 1.
“Life is trying no matter if you have chronic illness or not but the added pressure of a variable like Type 1 diabetes makes life’s aggravations even more challenging to bear. Stress impacts the individual at every level (physically, cognitively, and emotionally) and for the person with Type 1 diabetes, high levels of stress can be incredibly detrimental, not only making it harder to manage blood sugar levels but also rendering the individual sad, hopeless, and overwhelmed.”
Evan has had T1D for nearly her entire life and is still presented with the daily challenges of maintaining a normal blood sugar level and the accompanying mood swings; it is truly a lifelong endeavor. Treatment is incredibly nuanced, and people with Type 1 diabetes must monitor and strictly regulate myriad factors in their life. Diet is crucial for obvious reasons, but so too are less obvious factors like exercise and stress. Adrenaline from workouts can cause a spike in blood sugar, which can make it feel as though challenging activities like playing sports and going on adventures are out of the question for a person with T1D.
All it takes is a single trip to Beyond Type 1’s website (beyondtype1.org) to see how untrue that is. The DOC is full of anecdotal wisdom from diabetics of all walks of life who share tips and tricks on how to participate in a wide spectrum of hobbies while managing their condition. Mary Lucas, Community Manager at BT1, shares her journey in running a marathon with T1D, something that might seem out of the question after being diagnosed. Dave Nevins recounts his incredible adventures from bungee jumping to sea kayaking expeditions and skydiving and, of course, how could we forget Beyond Type 1 co-founder Nick Jonas’ experience as an international pop star living with T1D.
Support Extends Beyond the Individual
Type 1 diabetes can be diagnosed at any age and, as difficult as it can be for an adult to manage, it can be even more difficult as a child or adolescent. Adding onto the pre-existing slew of challenges presented with growing up, children who must count carbs and give themselves regular injections at school can feel ostracized and alone, especially among peers who don’t quite understand what T1D is.
Beyond Type 1 encourages students to deliver educational presentations to their classmates and gives them the resources to do so easily. Openly discussing Type 1 Diabetes with peers helps dispel the mystery surrounding the disease and gives a young student the chance to own it. Instead of feeling ashamed or like they have something to hide, people with Type 1 diabetes can step up and spread awareness and help other recognize symptoms in themselves and others.
Of course, there are challenges that are not as easily overcome with a presentation. Peer pressure to try drugs or alcohol can have serious consequences for a T1D who doesn’t quite grasp the severity of making uninformed decisions about what to put into their body.
Since, diabetes or not, no one likes to talk to their parents about drugs or sex, it is vital that young people with T1D have easy access to information regarding the management of their condition in the face of taboo subjects. Enter, yet again, Beyond Type 1’s online community. It is full of resources that address topics from basic diet management to “Sex, Drugs, + Rock&Roll.” It’s like having a bunch of older siblings with T1D whom you can ask anything, free from judgmental glances and lectures.
This, however, doesn’t change the fact that parents will try and talk to their T1D teens about sex, that’s just what parents do. Parents need the resources to recognize signs of mental distress in their children, and what to do if it is identified. And since being a caregiver to a T1D comes with its own set of burdens and challenges, the DOC welcomes all T1D caregivers with open arms and advice in dealing with their own mental health. The following is a quote from BT1 author Mark Heyman, PhD on caregiver burnout:
“Even when their child isn’t physically with them, these parents still worry about their child and may even be managing their child’s diabetes from afar. Even though most parents would do anything to keep their child’s blood sugars in range and make sure they’re safe, being a caregiver can be exhausting. Caregiver burnout is real, and often goes ignored (or even unnoticed) by those who are experiencing it.”
Going one step further than advice, the Beyond Type 1 program SafeSittings connects parents with babysitters who have T1D, ensuring that their child is in capable and experienced hands. While nothing will make a parent stop worrying completely, resources like SafeSittings and the community that makes them possible can make a world of difference.
Path to a Cure
There is currently no cure to Type 1 Diabetes, and Beyond Type 1 is one of many organizations working to change that. The organization’s Path to a Cure program focuses on funding early stage research that is typically not eligible for funding from the National Institutes of Health and other traditional means. Beyond Type 1 has partnered with Diabetes Research Connection, a T1D research organization with a scientific advisory council of over 80 experts, ensuring that 100% of dollars donated to The Cure Fund will be used to find a cure.
Finding a cure takes an incredible amount of support in the form of time and money. Beyond Type 1 has created a unified front 1 million strong dedicating both of these valuable resources to find a cure and help those diagnosed with T1D to live beyond their disease. In doing so, they have created a unique cultural identity that should serve as a role model for any organization driving a community-centered approach to philanthropy.
Numbers Don’t Lie
It is difficult to quantify the effects that a community can have on the quality of life of its members. It would take too long to list out all of the heartwarming testimonials to the Beyond Type 1 family, so you can read them here. What can be quantified, however, is the amount of money that this incredible organization has raised for the cause which, according to the BT1 2017 impact report, was $2,217,291 from about 4,000 donors in 2017 alone.
Note from the author:
Full disclosure, GiveTide and Beyond Type 1 are partner organizations. So if this article seems a bit biased, that’s because it is! They’re an awesome organization and a pleasure to work with.
BT1 + GiveTide during our trip to CA
Check out their app “Beyond Type 1 Diabetes” on the Apple App Store or Google Play! It’s pretty much the entire DOC in mobile friendly form, complete with native messaging.
And, of course, if you're looking for a way to support BT1, the GiveTide app lets you round up spare change from your credit or debit card purchases and donate with a single tap!