As Diabetes Awareness Month draws to a close, many companies and organizations have been discussing diabetes and related topics.


What I observed once again is that they failed to include some of the most experienced people – those who are living with diabetes.



People With Diabetes Are The Most Important People In The Room in Diabetes Discussions


Renza Scibilia, the global advocate and author of Diabetogenic, once aptly referred to herself and the other 422 million or so people around the world living with diabetes as the “most important people in the room,” and she’s absolutely right.


Who else better to shed light on diabetes than those who experience it 24/7?


While I don’t live with diabetes, I am the caretaker of a child with Type 1 Diabetes. He was diagnosed at 18 months old and is now a teenager. I’ll never know what he feels or what he has experienced growing up with Type 1.


As his caretaker and someone with years of healthcare experience prior to his diagnosis, I do have a few observations about the gap between Healthcare Providers (HCPs) and lived experience from some of the events I’ve attended and seen shared this month.



The Gaps Between Diabetes Health Care and Lived Experience



At Diapoint, we kicked off the month with Diapoint’s first annual Type 1 Family Weekend.


I was grateful for all who attended and supported, and for the involvement of the Arab Society of Pediatric Endocrinology and Diabetes (ASPED). They participated in a panel at our event where families, physicians, and healthcare providers came together to listen and learn from each other. This is not terribly usual and customary for our region, and I always appreciate ASPED’s openness to it.


Immediately after, I was honored to attend the ASPED annual academy. This allowed me to represent Type 1 caregivers, and provide valuable feedback from our perspective.


The conversations I was part of throughout November as part of Diabetes Awareness Month were rich and enlightening. Still, at times I was struck by apparent gaps between the health care that is offered to people with diabetes, and their lived experiences.


What was also striking was the inadequate representation of people with T1D. If the voices of people with diabetes are not elevated in these discussions, how can we ever hope to meet their true needs?


Diabetes Burnout and Caregiver Burnout: A Theme for 2023


One recurring theme that stood out to me was the concept of diabetes burnout. Health care providers often discuss this as an acute condition. While that may be true, this year, I came to realize that my caregiver burnout is fairly chronic, and it may also be the same for individuals living with diabetes.


I think the question we should be asking is what is the level of burnout we are experiencing? One day it might feel like a one, but the next day it can be a 10.


If you are a health care provider, it may be beneficial to approach every caretaker or person with diabetes with the understanding that they may be experiencing burnout at some level.



“Diabetes Holiday” – Another Theme for 2023


During one presentation, at the ASPED academy, the idea of a “diabetes holiday” was mentioned as a way to alleviate burnout.


I question the feasibility of such a holiday.


Diabetes requires our attention every day. Caregivers are constantly on duty, tending to their children’s health.


It was suggested that perhaps turning off insulin pump alarms at night may provide a slight respite, but the underlying fear of missing a potentially severe low blood sugar remains. Decreasing the number of decisions we have to make may bring some relief, but the burden doesn’t really ever go away.


I understand that this suggestion comes from a place of compassion and concern. And yet, if it were practical to simply take a holiday from diabetes, wouldn’t we do this all the time?



Diabetes and Psychology


In discussions on clinical psychology, the issue of parents neglecting to attend sessions was brought up.


I urge for a deeper exploration of the reasons behind this.


It could very well be rooted in the profound grief experienced by caregivers over their child’s diagnosis. The grief associated with diabetes doesn’t follow a typical cycle; it’s a lifelong rollercoaster of emotions.


It is also possible that some parents are never invited to their child’s psychology appointments, and perhaps assume that the sessions should be private.


Another reason? Burnout. Perhaps the 50-minute appointment is a rare weekly time-out for exhausted parents.


I did not encounter opinions from parents who are in this position. Again, we must make more effort to include the voices of those who have this experience directly.



Diabetes and Nutrition


Another topic that always catches my attention was the focus on the “right foods” or food restrictions when it comes to diabetes.


Instead of perpetuating a narrative of limitations, why not celebrate food and discuss the positive role it plays in nourishing our bodies?


Diabetes already feels like it has taken so much – let’s shift the conversation towards a comprehensive overhaul of what constitutes a healthy diet for everyone.



We Need to Normalize Caregivers Who Advocate Fiercely


Additionally, it’s disheartening to see parents of children with Type 1 Diabetes being labeled as “helicopter parents” by healthcare professionals and schools.


The truth is, if we didn’t advocate fiercely for our children, they would be excluded from various activities and possibly denied access to education. It is the advocacy and involvement of those who came before us that has paved the way for us to support our children to navigate a “normal” life.



Enriching Diabetes Discussions by Elevating Input From People with Diabetes


Reflecting on these experiences, I encourage all healthcare events and discussions surrounding diabetes to prioritize the involvement of those living with the condition.


The most impactful sessions at our own event were the ones that featured panels of people with diabetes sharing their own stories and insights.


Their firsthand experiences make them the true experts in the room that we need to learn from.


Similarly, the engagement of pediatric endocrinologists and healthcare providers who genuinely listened to the concerns and questions of caregivers made for a highly valuable and appreciated session and was the second most popular session at our event.


Moving forward, my hope for the future is to see increased inclusion and dialogue that encompasses the voices of people living with diabetes and those who care for them. By inviting them to be active participants in these events, we can foster a more comprehensive understanding of the challenges they face and work towards better solutions together.


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