The importance of community cannot be overstated. As humans, we strive to know and be known, and yet, it can be so difficult to find a way to be vulnerable to others in a way that is organic, authentic, and leads to meaningful relationships. After the diagnosis of a chronic illness like diabetes, the instinct felt by many is to fold inward.
After all, how could anyone possibly understand the confusion and devastation that you are feeling?
It can take time to feel ready to open up to even those closest to you, especially when misunderstandings around the illness are perpetrated by people who you had hoped would know better. The key is getting to the point, post-diagnosis, when you are ready to find a community of people who are bound by their common experience.
My journey towards the diabetes community was gradual. It began in the hospital at diagnosis, when the two people I have known my whole life, family and friend, who live with type 1 diabetes came to my bedside to solemnly welcome me to their club. One did so by fiercely advocating on my behalf to the ICU nurses and endo on call, and the other, later, with tears in her eyes, assuring me that I would be okay. This was my small community.
Despite typically being a joiner, it took me some time to be more than an occasional online lurker in diabetes forums, or to get involved in advocacy organizations. It was not until I was introduced to the outreach manager at my local JDRF chapter that I felt that engaging in this community was an option for me. She gave me the space to get involved at my own pace, and when I was ready, I hit the ground running. Shortly after that, I was introduced to a small but mighty local organization that mostly works with families of children with type 1 diabetes, PADRE (Pediatric Adolescent Diabetes Research and Education) Foundation. Not long after that, I heard about a conference coming to town called Children with Diabetes Focus on Technology (2014). CWD was known for their week-long gathering in Orlando, Florida, Friends for Life, but having them in Southern California for a conference on life with T1D and the accompanying technology was a treat, I was told. Being just a few months out from diagnosis, my family and I thought it would be a good thing to attend. Little did I know, attending that conference would be a turning point in my life.
Without getting into the nitty gritty details of what was going on in my life at that moment in time, I can tell you that I was experiencing some serious challenges in finding resources for living well with type 1 diabetes as a newly diagnosed adult, as well as my employer's maladjustment to my diagnosis. When I left my office that Friday afternoon of CWD, I was quite uncertain about what I would be coming back to on Monday morning, but it was not long after arriving at the vendor fair and dessert reception that I found I was in good company amongst others who knew the highs and lows of T1D. Throughout the weekend, I learned so much about a number of important management topics and upcoming technologies, but two additional things occurred that were perhaps the most valuable things I gained from my first Children with Diabetes conference. The first? I quickly made life-long friends to live diabetes with through the good times and the more challenging ones. The second was key to dealing with the issues I had been experiencing at work--I learned that I had rights as a person with type 1 diabetes under the Americans with Disabilities Act (ADA). I left the conference that Sunday with some solid facts to hold onto:
- Prioritizing diabetes management and well-being is much more important than fighting constantly to prove yourself to people who will never see past your diagnosis to the quality of your work and character...and being treated in this way in relation to a federally protected disability is not just distasteful, but illegal.
- There are a lot of people out there working to find a cure for this disease, and improving our quality of life in the meanwhile.
- The type 1 community is full of amazing families who strive to live beyond the circumstances of the diagnosis of their loved one(s) and support each other along the way.
- I will always have a home in the type 1 community.
These were the gifts I received from Children With Diabetes in 2014, and they have continued to pay dividends as the years have rolled forward.
For example, in 2015, I made a wonderful friend, a young woman visiting from Denmark doing thesis research on psychomotor therapy for individuals with type 1 diabetes. We just got together this week on her travels back to the US. I learn so much from her and the perspective of T1D from around the world.
In 2016, I was given the opportunity to represent the local chapter of the American Diabetes Association as a volunteer partner with one of the special friends I made at my very first CWD event.
In 2017, I came full circle on a great deal of the information I received at the Anaheim conference in 2014. Technologies that were discussed as possibilities on the horizon were this year presented with data from trials recently undertaken. Hearing similar presentations from diabetes experts now resonated with me in a completely different way as a more experienced PWD and a certified wellness coach (a career path taken with influence from my experience at my first CWD conference). The overwhelmingly positive response I received from sharing with friends new and old about the very recent publication of my first title, Type 1 Diabetes Caregiver Confidence, a labor of love for my T1D family, was incredibly heartwarming and rewarding.
All of these things are specific to what I enjoy about our community, but the list certainly doesn't stop here. I am grateful for the organizations that foster our sense of community in-person, not just online. The DOC (diabetes online community) is mighty and wonderful in its own way, but sometimes simply being present in a room of people like you is powerful in a way that is indescribable. In my local community, we are fortunate to have an active JDRF chapter, PADRE Foundation, The Mary and Dick Allen Diabetes Center at Hoag Hospital, Herbert Family Program for Young Adults, and the people who make it their mission to have these resources available to us.
I am so appreciative of Children with Diabetes for making the decision to bring a weekend conference to us here in Orange County, California. The event's home at the Disneyland Hotel brings its own magical moments to a disease that often has many of the opposite. It is a great place to be with others to sprinkle some pixie dust over life with diabetes. I don't know if the brief in-person "thank you" that I give to Jeff Hitchcock, Founder and President of Children with Diabetes, the CWD staff and board, as well as the sponsors who recognize the importance of supporting events like these, could ever be enough to let these individuals and companies know how vitally important this is to our community.
I have been told numerous times that CWD Friends for Life in Orlando, Florida is unlike any other T1D gathering. This year the event takes place at the Disney Coronado Springs Resort from July 4-9, 2017, so go make your plans to attend if you love Disney magic and the diabetes community.
The instinct upon diagnosis may be to fold inward, but over time, insulin, education, and a little bit of sunshine creates an environment where we can each bloom and thrive as part of the diabetes community. If you and your family have not found your way to engaging with this unspeakably wonderful group of people fighting the same battle as you, I urge you to take steps to get involved when you are ready.