When you have type 1 diabetes (T1D), people might see the CGM on your arm, the pump tubing, or the finger pricks.
Some may even see the physical challenge of balancing food, physical activity and insulin.
But what only the people who live with T1D see is the internal struggle that comes with living with a disease that impacts every minute of every day – every single day of your life.
“We don’t have time for stories about heartbreak, abandonment and pain. But I want you to know that I too have felt those, and every day I choose to move forward with gratitude. That is my greatest coping mechanism.”
Breakthrough T1D National Mission Director Nicole Johnson, Ph.D. shared her deepest pains, struggles and sources of pride living with T1D when she spoke to more than 200 people attending the “Women as Change Agents in the Diabetes Landscape,” held in San Francisco by Diabetes Education Services.
“I realized that vulnerability was an asset and not something to be embarrassed by. I revealed my deepest wounds and saw great promise arise from my ashes.”
The event – aimed at sharing inspiring stories of “women luminaries” who changed the status-quo – included American Diabetes Association CEO Tracey Brown; Director at the Behavioral Diabetes Institute Susan Guzman; the founder and president of Diabetes Education Services Beverly Thomassian; and five other female leaders in the diabetes community.
Nicole, who has dedicated her life to helping and teaching those with T1D, talked about the difficulties she hears from young adults struggling to gain independence, “be normal” and feel like they can succeed.
“One of our main jobs in diabetes is to help people care. They have to care about themselves. They have to find the courage to not judge themselves. They then need to care about their diabetes and they have to find the courage to keep at it even when it is hard,” she said.
At Breakthrough T1D, Nicole is spearheading work to drive both research on and educational support for the emotional and psychological factors of T1D.
“By confronting the burden associated with life with type 1 diabetes and challenging healthcare delivery to include the consideration of emotional and psychological factors, we know we will improve lives and diabetes outcomes,” she said.
She also offered the audience three key tips:
- Isolation Leads to Poor Outcomes = Friends are
Medicine - Minimization of Judgment and Shame = Opportunity
for Resilience Building and Courage - Humor and Fun are Important = Create Stickiness
“To lead, to succeed, to connect…..we must know who we are, we must be willing to be real and honest, we must focus our attention on others and we must be worthy of trust.”
Follow Nicole’s work at Breakthrough T1D with young adults at: https://www.facebook.com/JDRFYoungAdults/
