Adolescence, Stigma, and Owning Diabetes
Adolescence can be a confusing time, and this is doubly true for teenagers with type 1 diabetes. At a stage when everyone is starting to figure out who they are, the teenager with type 1 must also decide how much they want diabetes to be a part of their identity. Katie Bacon, the mother of a teenager with type 1, spoke with a range of experts and peers who shared their expertise and experiences on this subject.
Our daughter was diagnosed with type 1 diabetes at six years old, just before she started first grade. At the time, it was important both from a safety perspective and from an emotional one that the people around her knew about her diagnosis. Along with her teachers and the school nurse, we let all her friends and their parents know, and they rallied around us to support her. She quickly owned having type 1. It became an important and immutable part of her identity, one she was proud to share with others.
Fast forward eight years to this past fall, when she was doing orientation for her new high school. After being surrounded by a group of familiar and supportive friends from kindergarten through eighth grade, here she knew almost no one. Not to mention that, in the era of COVID-19 – with masks, cohorts, and strict rules about socializing – it would be much harder to meet people.
During orientation she was asked to create a timeline of important moments in her life. While chatting about what she might write, I asked if she were going to include her diagnosis. Her response seemed to come completely out of left field: “Why would I put that down? I’m not planning on telling anyone unless I become really close friends with them.”
She made it clear that she was now much less willing to acknowledge having type 1 as she entered high school. Although she didn’t express it quite this way, it seemed that the reason stemmed from a desire to avoid being judged or stigmatized – she didn’t want to be known as the new girl with diabetes. So, we agreed that we would tell the school nurse, her teachers, and her sports coaches – for her health and safety, it was non-negotiable that they all know. We also agreed that it would be up to her to choose when (and if) she would tell her friends.
Still, it felt like my daughter was cutting away her safety net. I wanted to know if this shifting perspective on her condition was typical for teenagers, and I wanted some advice on how to help her through it. I reached out to Rachel Rifkin, a longtime friend who was diagnosed with type 1 at age ten; to Dr. Ananta Addala, a pediatric endocrinologist at Stanford Children’s Health; and to Dr. Persis Commissariat, a pediatric psychologist at Joslin Diabetes Center who also has type 1. Through their expertise and experiences, they helped answer my questions about disclosing teenage diabetes versus hiding it; about stigma, perceived stigma, and how to deal with it; and about how to let go a little bit while still giving our daughter support through this process.
One of the crucial parts of adolescence is identity development, when teenagers figure out who they are in relation to their family and their peers. At this developmental stage, people are particularly sensitive to being different in any way; and if they are different, they want it to be in ways that they’ve chosen. All of this is complicated, of course, by having a chronic disease that requires frequent visible action and identifiable devices to manage (insulin shots, continuous glucose monitors or CGM, insulin pumps, etc.).
Dr. Commissariat took on this topic as the lead author of a paper on identity and treatment adherence in teens and young adults with type 1 diabetes, which appeared in Pediatric Diabetes. She and her co-authors looked at the differences between those who “incorporated” their illness versus those who “contained” it or tried to keep it separate from the rest of their identity. “Those who incorporate their illness … take it into account in their daily life and are able to find ways to include the illness as part of their sense of self. Those who contain their illness may try to keep their illness hidden, worry about stigma, or try to … maintain a sense of self [that is] unburdened by illness, often ignoring daily self-management needs.”
What they found, Dr. Commissariat explained to me, was that people who tend to take a more “positive approach to making diabetes part of their sense of self – people who view it as ‘it’s my burden and I'm okay with it’ – tended to have lower A1C levels. They were a little more engaged in treatment.” In other words, those teenagers who managed to incorporate diabetes into their identity usually did better.
Because of this, Dr. Commissariat works with her patients to help them develop an identity that has “an appropriate degree of type 1 in it. I don't think anyone needs to identify first and foremost as a person with diabetes. But the fact of the matter is that there are secondary issues that come up if we don't take care of diabetes. So, you must identify with it to some extent. And I think what oftentimes becomes difficult for teenagers is finding that balance between being a ‘normal teenager’ and being a teenager with diabetes. Because on its face, they don't really go hand-in-hand, but they should and they can.”
As I’ve witnessed firsthand with our daughter, adolescence can be a time when children want to move away from their identity as someone with type 1. When Rachel Rifkin was a teenager, she found herself transitioning from being relatively open about having to type 1 to having it be something that she preferred to keep to herself. “I always did whatever I could to avoid people knowing about it. I always wore my pump in a back pocket. I never wanted to clip it onto the front of my pants or anything.”
In her practice, Dr. Addala has seen people go both ways. While she says that it’s more common for teenagers to “minimize the thing that makes them different, which is a very normal teenage developmental thing to do,” she’s also had patients who have embraced that difference. And in fact, in those individuals she sees a “further doubling down on the fact that diabetes is what makes them who they are; it's a source of strength and pride and something that defines their character.”
But for those teenagers who aren’t willing to talk about or share that they have diabetes, both Dr. Commissariat and Dr. Addala try to understand the reasons behind the hesitancy. As Dr. Addala explains, “I try to see where the source of the apprehension comes from. Is it specifically that they don't mind taking care of their diabetes or they don't mind wearing technology, but they just don't want other people to see?”
In these situations, Dr. Addala treads lightly and tries to respect the teenager’s feelings while gently encouraging them to open up. “I let them lead a bit when this topic comes up. They might say, well, I think I could probably tell my closest friend that I have diabetes. Or maybe they’re not willing to tell anyone, and I do my best to support them even in those cases. I’m trying to find out where their internalized stigma is originating from, and then see how far they're willing to go in terms of who they share the information with. I generally use this approach because then they have some ownership.”
Dr. Commissariat points out that there’s an essential difference between being private about having diabetes and being secretive about it. As she tells her patients, “You don’t need to advertise it. But for safety purposes, it is important that at least a couple of your close friends know.”
She also talks about helping teenagers learn to communicate that they have type 1 in a way that feels manageable and builds confidence. She tells her patients: “I want to know exactly what you wish other people knew about diabetes. And then let's find a way to teach people in a way that is not burdensome to you. Teenagers are trying so hard to not draw too much attention to themselves, so I often practice with them in our visits – how can we bring this up in a way that is not going to bite you in the back? That could mean having a serious discussion with your best friend, or that could mean something as easy as wearing short sleeves around people who don't know you have diabetes, just so that they can see your CGM. Wait for people to comment on it. Use a passive disclosure strategy where you just pull out your pump and you take a bolus, and you don't say anything unless somebody asks you.”
It's especially helpful for teenagers to have a disclosure strategy when it comes to romantic or physical relationships. As Rifkin says, “With people you're interested in, it’s a whole other web that you have to navigate in terms of what you tell people and when. And as I'm sure you can imagine, if you have a CGM or a pump, there are physical things on your body that may come up. It’s helpful to have a strategy for how you deal with that.”
Teenagers tend to be both self-centered and self-conscious, so when it comes to diabetes, it’s easy for them to assume that everyone is noticing it in a negative way. Rifkin remembers being in a movie theater one time when her pump started beeping. “I was so horrified. I was like, ‘Oh my God. Everyone must hate me right now. I'm ruining this experience for them.’ You don't have a lot of perspective at that age. Diabetes seemed like such a big deal.”
Dr. Commissariat points out that all teenagers tend to think the focus is on themselves – even when it’s not. She tells her patients, “Your friends don't care that you've had to go to the bathroom to take an injection. Your friends are like, ‘Okay, let's go to the bathroom, then I can check how my hair looks.’” And she comments that those who do ask about it are probably asking because “they’re interested and they’re curious, and maybe those will be the people who will help you in the future.”
Another tip Dr. Commissariat gives her patients is to make sure that they talk about diabetes in the way they want others to see it. “If you don't want it to be a big deal, don't make it into a big deal because people are going to mirror you.”
For both Dr. Addala and Dr. Commissariat, part of the process is working with the parents on learning how to give their children the space to develop independence, as teenagers need to do. This can be a difficult transition, since diabetes requires so much oversight from both the parent and the child. As Dr. Commissariat says, “One of the major tasks of this developmental stage is to be independent and become less attached to your parents. But it’s really hard with diabetes to be less attached to your parents and be more like your friends when you're managing something that takes so much responsibility.”
Dr. Addala focuses on helping parents try to see the situation from their child’s perspective. “So often part of the conversation is helping the family understand why a teenager might not want others to know they have diabetes. Where safety is concerned, it helps for the family to create boundaries around what is a true concern, and what’s just an added buffer in terms of safety.”
For both Rifkin and Dr. Commissariat, owning type 1 was a long process, one that continued into adulthood. Now, Rifkin says, “I'm a lot more open about it. I think it makes sense that those feelings that teenagers have of wanting to be private and not wanting to stick out at all fade over time, as people feel more confident in their own skin. These days I don't feel like I have to explain it to anybody.”
Dr. Commissariat describes a long process of slowly pushing herself to make diabetes a more public part of her identity; she started by keeping her pump on display rather than keeping it in her pocket. Then she moved to bolusing and checking her blood sugar in front of people she knew and then also in front of people she didn’t know. Part of the change, for her, started when her nurse practitioner sat her down and said, “You’re not a diabetic, you’re a person with diabetes.” (Dr. Commissariat has since learned about research suggesting that this shift in labeling helps people become “more accepting of their identity with diabetes.”)
“When I look back on it now,” she says, “that statement suddenly clicks for me [in terms of] everything I went through. I thought diabetes was trying to define me, and that was my big mistake. I own it, it doesn’t hold me. When I allowed diabetes to be a part of my day and created my own definition of myself with diabetes as just a part of who I am and what I do, it wasn’t quite as burdensome anymore, but still annoying, no doubt.”
As for our daughter, after a year at her new school, my sense is that she’s still private about her diabetes, but she’s no longer secretive. A couple of her closest friends at her school now know, and that feels like a good start. At an event at the end of the year, after what felt like months where she hadn’t been willing to bolus in front of anyone, I finally saw her pull out her pump and give herself insulin right there in public – even if she was a bit off to the side. No one except me seemed to notice. I felt like she was beginning to establish that place for herself where she could feel like any other teenager. A teenager who just happens to have diabetes.
Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.
Note: Given the personal nature of this article, Bacon asked for and received her daughter’s permission to publish it.