Many people decide to go into a career related to diabetes once they have received a diagnosis for themselves or a loved one. When I was a teenager, I remember attending Friends for Life Orlando and meeting a diabetes educator with diabetes who taught us the reality of living as an adolescent with diabetes. This was the first time I implicitly trusted a healthcare professional who worked in diabetes. There were some others who I would listen to a bit, but hearing from this educator that she wasn’t perfect with her diabetes made all the difference.
Insight into the realities of diabetes
As someone who knew a lot about diabetes (because my dad had literally built a website in our basement in Ohio about diabetes at the dawn of the internet age), I found it challenging to trust the diabetes educators or even doctors that I saw at the clinic. Even though I was very thin growing up, one of the dietitians declared that I needed to go on a reduced-calorie diet to keep my diabetes “in control.” The doctors were afraid to start me on an insulin pump because they weren’t used to putting them on children younger than 16.
The diabetes educators I saw at the diabetes clinic who had diabetes did not always disclose right away that they also lived with diabetes. They absolutely did not talk to me about what drinking does to blood sugars and provide reassurance that we could be normal teenagers with added safety mechanisms in place. Many diabetes care providers talked about blood sugars being in control as if it were easy to do if I made the right choices. But when a person with diabetes in any medical profession spoke to me in a non-judgmental way, understanding, and down to earth, I was ready to listen and learn.
Street cred
There is something powerful about someone with diabetes sharing their experiences with others. When I meet others with diabetes, it’s almost as if I let down the guard I keep up for the rest of the world who, by and large, don’t understand the complexities of diabetes. There is an immediate connection, a feeling of “I get it,” not achieved outside lived experience. This is how it felt to have an educator with diabetes; I felt an instant trust with that person and opened my mind to hearing what they had to say.
At Friends for Life, I would simply exist and talk about my life with diabetes to parents of younger children, and they would feel a sigh of relief that their child could become a healthy teenager, young adult, and adult now. It was incredible how simple it was to help reassure people that it would be okay. I knew I had to put this superpower to use and became a nurse and diabetes educator myself so I could pay it forward to the next generation of people with diabetes. After all, I have street cred, as the saying goes.
Hi, I’m Marissa, and I have diabetes, too
The first thing I say when I walk into a room 99% of the time is the statement above or something like it. I then say I’m also a nurse and a diabetes educator. I have never regretted telling a family or person with diabetes that I, too, live with diabetes. This lets the people I’m talking to let their guard down, even if just a little bit, to let me in as someone who wants to help them stay happy and healthy. If you don’t trust your nurse or diabetes educator, why would you listen to them? This doesn’t mean educators, nurses, providers, etc., who don’t have diabetes are untrustworthy; it simply means they sometimes must work a little harder to earn their patients’ trust.
For just under two years, I have been working in a clinic with children who use public insurance or are members of marginalized communities. This means that many of the folks I meet with are disenfranchised and struggle with social determinants of health. It also means that there is a lot of mistrust in the system at large, and as a healthcare professional, I am a part of that system. Even more so as a white, heterosexual woman. My goal is simple: to work with families of any background, identify their goals or needs, and do my best to assist them. It seems that sharing my own experiences with my diabetes helps break down these barriers and allows me to build trust early on in my relationships with families.
Why don’t others self-disclose?
I have been asking myself this question since I started working in this role and learned that many who live with T1D do not self-disclose. I have been informally polling people to find out their reasoning to try to understand it better. Here are the typical themes from the comments I have gotten:
- I don’t want to take away from the focus on the patient
- My life experience is so different from theirs, and I’m not sure it would help to share
- I’m worried about sharing my own diabetes stories
When I asked healthcare professionals who self-disclose why they believe their coworkers may choose not to, the responses usually ranged from taking away focus from the patient to feeling uncomfortable sharing. When I talked to healthcare professionals who do not live with diabetes, the comments were really interesting. I most frequently heard that some people shared inappropriate or unevidenced-based things, making them fearful of what information is being shared. Another comment I heard more recently was that they don’t want patients to request specific providers or educators who live with diabetes, as that is an unachievable goal.
Relationship to diabetes
The truth is that I haven’t found any very compelling reason to withhold this information about myself to anyone. I have lived with T1D since before I can remember, and it has always been embedded in my identity. I also grew up attending many diabetes camps, Friends for Life conferences when I was a teenager, and in a household where diabetes was accepted in a way others may not have the benefit of experiencing. I have met parents who are in such denial that their child has diabetes that they withhold insulin or try to treat it with herbs or other remedies. I have met parents who completely ignore it and give their child the responsibility of managing “their diabetes.”
I am lucky to have been supported by my parents through all the ups and downs of diabetes. The way diabetes was discussed helped me feel unashamed of living with it, even if it made me different. My parent’s philosophy on diabetes, combined with frequent exposure to peers with diabetes, has led to my positive relationship with diabetes. I wish everyone could have an experience like mine, where they feel completely unabashed when it comes to their diabetes.
Perhaps many healthcare professionals do not take the same pride in living with diabetes. Perhaps they are under pressure from their institution or colleagues to keep their diabetes to themselves. I recently completed an online ethics training course on healthcare ethics that clearly stated that we should refrain from sharing personal information. I immediately scoffed and thought, well, I guess I am not such a rule follower after all…because, at the end of the day, I will choose to help people 100% of the time. And in my lived experience, sharing has always been helpful.
Shared experiences
When it comes to the thinking that sharing personal information will take away from the focus on the patient, I suppose that’s a matter of philosophy. Building a relationship with someone is bidirectional, meaning if I ask them to share a lot of their personal experiences and feelings, I can share similarities to help them feel more comfortable sharing. It can be hard for many to be vulnerable in front of someone else, especially when you may experience a lot of diabetes stigma in your everyday life or with past (hopefully not current!) healthcare professionals.
I love to show my CGM data when it doesn’t look perfect – reassuring them that when they struggle with diabetes management, it is not a sign of failure. I want them to know that we all struggle with diabetes in one way or another, at certain times more than others. People want to be heard, seen, and validated. Sharing your diabetes humanity is a gift that I highly recommend giving to anyone you feel comfortable with, especially those you are trying to help. I hope that you get to a place where you are empowered to communicate more openly with others about your diabetes, whether you’re a healthcare professional or not. It can only serve to help spread knowledge and reduce stigma.
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES
