Quick note: This week (May 16-20, 2016), GraceMark Musings is participating in Diabetes Blog Week, adding our voice to the chorus of diabetes bloggers, caregivers, and friends of the DOC (diabetes online community) who are uniting to share their unique reflections on certain topics prevalent in life with diabetes. Thank you to Karen Graffeo at Bitter-Sweet for creating this opportunity--congratulations on the 7th year of D-Blog Week!
Part I: Being Here
The kick-off prompt for this week is quite simple. It asks, "why are you here?" and "what is the most important diabetes awareness message to deliver?"
I'm here, on the internet, with the GraceMark Musings blog and my health coaching practice, because I nearly died. The near-tragedy could have unfolded completely differently if healthcare providers had more education on type 1 diabetes (and knew that anyone can be diagnosed with T1D at any age, not just in childhood). Then I was diagnosed with type 1 diabetes, considered a "juvenile" issue by many in the healthcare space. I dealt with a lack of information and medical resources available to adults with T1D, severe stigma around diabetes, and the question of how to return to a semblance of normal life. Then, as I struggled to balance on the type 1 tightrope, just as the career path which I had found myself on boxed me out and left me in the cold as a direct result of my diagnosis, my feet lost their grip. When the ground under me seemed to be crumbling under the weight of my circumstances, I heard something.
"You've struggled to find the resources you need? Find and provide them for the next person to travel your path."
"You've struggled to find the practical advice to help you live a "normal" and healthy life with chronic illness? Share what you've learned so others won't feel trapped in bodies that feel unlike their own, living lives that they do not recognize."
"You couldn't find an advocate in the healthcare field to guide you through the unseen struggles of diabetes? Become that person."
"You were once alone and frightened by the enormity of this diagnosis. Don't let anyone else feel that desperation."
I felt this so strongly, I could not and did not hesitate. No sooner that I had declared to my family and closest friends what my next educational and career move would be, I declared to myself that I would add a blog section to my coaching practice site, so I could have an outlet where I would be able to share to my clients and beyond. I had also hoped that some people living untouched by diabetes might even read what I had to say, finding applicable wisdom and healthy living tips, and that they might read about and become educated on life with diabetes, receiving a small peek into our world. Certainly, I would never wish for the uninitiated to be forced to familiarize themselves with the 24/7 self-management of T1D. My hope is that, perhaps, those individuals will one day be able to empathize and advocate for a cure with the same zeal with which they might fundraise for other illnesses that receive more airtime and less stigma.
The delivery of what I consider to be the most important diabetes awareness message may look or sound different depending on the day, but what it comes down to is a combination of education, empathy, and advocacy. The empathy, for each other within the diabetes community and with our family, neighbors, and the medical community at large, is vital. The thing is, we can't expect people to know what we know, or what we feel, or what we need, if we don't tell them. We have to educate and communicate to make space for that empathy to occur.
What's my point? When we educate, communicate, and create space for empathy, we also create the ability to have meaningful conversations that lead to advocacy in all of the essential forms, resulting in fundraising, awareness, medication and device access, research, lessened stigma, and stronger relationships with the medical community. That's what I consider to be the most important diabetes awareness message.
Part II: The Mental Game of Diabetes
The second prompt for this week is about the "other side" of diabetes. Most people do not realize that the most difficult part of living with type 1 diabetes, or any chronic illness, is separate from the 24/7 self-management of the disease. The most challenging and painful moments don't come from pricking your finger, giving yourself a shot, or inserting an infusion set or CGM sensor. It isn't even the frequent laboratory testing or other invasive procedures that we endure to prevent and monitor the development of complications. The other side of diabetes, the most challenging and painful aspects of living with this disease, is felt in our minds and hearts.
Today, I don't want us to get bogged down in the situations and feelings that we experience when the psychosocial aspects of diabetes get the best of our time and attention. Let us acknowledge the fact that individuals living with diabetes have an increased likelihood of anxiety disorders. Diabetes-related depression, distress, and burnout are real, and they can have a serious effect on health outcomes and overall quality of life. Even when the emotions associated with the physical burden aren't "enough" to necessitate intervention by a mental health professional or medication, the feelings still lurk. Some days, it's a nagging feeling that you're never doing a good enough job trying to keep yourself healthy. Others, it feels like no one else could possibly understand the challenges you're up against all day and all night, every day and every night, let alone ever want to join you in tackling the issues head-on, as a friend, family member, or significant other.
Here are some ways that I alleviate the effects of the emotional burdens of the uninvited triple D (Diabetes Debbie Downer):
Sometimes, I just give in. I find that acknowledging my feelings and bad days helps me get past them faster than pretending they don't exist. Maybe I take a nap, excuse myself to my room and listen to some John Mayer slow jams, or find some other distraction. When I'm done, I do my best to brush myself off and move on.
Exercise! Working out is a great natural boost. Personally, I love a great group exercise class. I find yoga is great if I'm feeling like getting up close and personal with my emotions. Indoor cycling (SoulCycle, anyone?) is what I choose when I'm ready to re-focus and kick some butt. Personal preference. You gotta choose what works best for you.
And then there's working intimately with my emotions. Energy permitting, examining the emotions closely, attempting to uncover the root of the issue, can be helpful. Sometimes, I can untangle them with patience. Other times, I need to close my eyes and focus on gratitude, or use mindfulness as a tool to get out of my own head.
I'll leave you with this:
I once read that if you are experiencing sadness, you are living in the past. If you are experiencing anxiety, you are living in the future. Living in the present is the most effective way to keep these emotions capable of derailing our well-being at bay. More simply put, stay in today. A wise, good friend of mine told me that she has used those three words as an effective mantra during the most trying periods of her life. It's effective for me as well. Maybe give it a try next time you face a trial that begins to consume you. Let go of what's been done, for it is over. Let go of your expectations and fears of what comes next, because you are not yet there. Relish this moment, because it is the only one you hold in your hand, that is available to you right now. Do not worry about tomorrow--you'll deal with that moment when it arrives. Stay in today.