Understanding Pediatric Youth: Visibility
We have all encountered people in our lives who have visible disabilities. These people, despite being just like those who are able-bodied in most ways, often find themselves treated differently. And for many of us, seeing someone with a disability can cause us to think about them differently, especially by triggering feelings like pity. But what if I were to tell you that it's not always those with a visible disability who suffer difficulties, and those with invisible conditions sometimes suffer more? Continue reading to find out more.
Trying to figure out the visibility of any condition is difficult. You can argue that something is either visible or not, but as is the case with everything there is a range of visibility. When most people think of a visible condition, they probably think of something involving altered skin appearance or a wheelchair. However, what about something like an insulin pump? Surely that's something visible, and it communicates that a person has a condition of some sort. What about someone who has a slightly irregular walking pattern due to a condition? Again, there's a visible sign of a condition, but it could easily be missed if people weren't paying attention.
Visibility of conditions is something that hasn't had much study, but that many people discuss as being relevant to a person's experience with a medical condition.
Much of the research on visible medical conditions has involved drawings of, or stories about, kids with a visible condition. In these studies, different kids have responded differently, and it's unclear how much a visible condition will affect how a child is treated by peers. More informally, there are definitely challenges related to social interactions with peers for any child who has a visible medical condition.
A lot of that difficulty seems to stem from a lack of understanding. If healthy peers are unfamiliar with the medical condition that they are seeing, they may feel uncomfortable and avoid the child, even if they do not have anything against that child. In fact, when appropriate education has been provided to classrooms regarding the medical condition of a student, and emphasis has been placed on how similar the student is to the healthy peers, there can be little-to-no negative impact on friendships.
That's not to say that there isn't anything that should be done to continue to improve the situation. Culturally, there needs to be further understanding of what it means to have a visible medical condition, and how it doesn't change who a person is. Instead, they may need some accommodations and understanding, but they are otherwise just like other people.
Perhaps more interesting is the group of youth who have conditions that are not visible in any way. This means not only that there are no altered appearances or medical devices, but that physical functioning is generally unimpaired as well. These youth, at least in a couple of studies that have been done, actually struggled more than those with a visible condition.
It's a little unclear why this may be the case, but there are some thoughts. For these youth, there can be a disconnect between how they see themselves, and how they really are. When youth see a normal-looking person in the mirror, they may want to believe that they do not have any limitations or are in any way different from healthy peers. However, just because a medical condition isn't visible doesn't mean it isn't limiting in some ways. Struggling with the limitations, while also feeling that they are healthy/"normal," can lead to struggle and denial.
When someone doesn't have a visible condition, it also means that they are likely not treated differently from their peers. While most would consider this a good thing, and in some ways it is, there are also challenges when there are pressures which go against the person's condition. For example, a teenager with diabetes that doesn't involve a pump may be pressured more by friends to eat unhealthy foods because they don't realize the severity of the condition. (To be clear, I haven't seen a study that has looked at this specifically; this is just an example that seems plausible from my experience). This lack of accommodations and addition of social pressures can lead youth to act in unhealthy ways, which reduces their physical health but also their mental health, making their experience with their condition worse.
Right now, many of you may be thinking of people in your life who have an invisible condition. When you think of them, it may seem like they are fine and this doesn't apply. Well, it's certainly possible that they're doing fine and don't need any additional understanding. But it's also possible that you're not seeing their struggles, and they could really benefit from additional communication. By being mindful of conditions (but being careful not to default to feeling pity), we can have more open discussions about what is best for people, and that can help improve their quality of life.
Living with a medical condition, visible or not, is a struggle that many face on a daily basis. When interacting with people who have these conditions, it's important to not make assumptions based on appearances, either good or bad. It may feel uncomfortable to talk openly about some of these things, but it can make a world of difference to someone. So if you know people with a medical condition (and you probably know more than you think!), try talking to them about their experiences. In doing so, you'll hopefully learn more about those who have that condition, more about your friend, and your relationship can become stronger.
Does this topic remind you of someone you know with a medical condition? Do you have a medical condition, and have found the (in)visibility difficult to manage? Let me know in the comments!