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Documenting Terminal Illness on Social Media

Sharing stories of terminal illnesses is a way to connect to a broader world.

There are many examples of teenage girls and young women in their 20s facing terminal diagnoses who document their health journeys on various online media but most notably on YouTube. These medical journeys attract thousands of viewers. Some wonder whether this is a healthy coping mechanism or matter of worrisome over-sharing. Some also wonder about the effects on the followers/viewers of these journeys. Are they becoming overly invested in the welfare or well-being of total strangers?

It can be healthy for a young person to document her health journey. This is a generation raised with social media, which are the primary means of communication and connection for many. Illness can be incredibly isolating for all kinds of reasons; being terribly ill can be a full-time occupation including hospital stays, various treatments that leave a person incapacitated, doctors’ appointments etc. Families may also try to “protect” an ill person from too much interaction under the belief that the social contact may be too draining. Of course, there is some truth to this in many cases but—and it is a significant but—social contact, having friends, feeling as if a person has a life outside the confines of her illness are all vital. Even as a person is being shielded, there are too many healthy people tentative or afraid to be with people who are so ill especially when that person is young. If the person has a terminal illness, this makes it even more difficult because most people are afraid of death—the fact of it, the manner of it, and the meaning of it. We think death is not normal rather than being a fact of life. Death isn’t the exception; it is the rule.

Documenting their health journeys is one way people can maintain autonomy and agency. A young person who is still a minor may not be in charge of her healthcare decisions at all. Yes, she may have some voice, but most parents or guardians are the ones making the decisions. The decision to document and all the subsequent decisions that go along with it (what to share, how often to do it, what topics to discuss, etc.) are all ways a person exercises her autonomy. It is also a way to exert some control when so much else in life is outside her control.

These videos enable a full-blown complex individual to be seen and not just a person who has a terrible disease. As much as the medical profession has gotten better at treating persons and not just diseases or conditions, there is always a kind of reductionism and even objectification at work. A person’s individuality gets flattened in so many ways in the medical industry. The young people in these videos emerge as interesting, thoughtful, and typical teenagers. By “typical” I mean they are just regular kids their age having some of the same concerns as others not sick. And at the end of the day, feeling regular may be one of the greatest gifts.

The video blogging could be detrimental in some way if it consumes too much of a person’s time and she spends an enormous amount of time online. For the sick YouTubers, a possible negative consequence is a feeling of vulnerability of having shared too much. Every young person has to learn what’s appropriate to share on social media and what is not; this is just an instance of learning to set good boundaries. Parents of healthy and sick children may help to set these boundaries but ultimately each young person needs to recognize and set them for themselves.

Why do these young documentarians attract so many viewers? Young people connect a great deal on social media. For many, it may be easier to “friend” or follow a complete stranger than it is to meet people in person (that’s another story). I think it is part of human nature to want connection to others. In some ways, the videos of these young women engage with some of the worries typical of teenage girls but with added dimensions. They can really help people to gain some perspective. For example, many girls worry about a bad hair day but there’s a huge difference between a bad hair day because my bangs are too long and a bad hair day because huge clumps are falling out. Watching these videos is one way to feel and direct compassion.

Young people seek not just connections but intense attachments with people regardless of having met them in person. This may surprise older people until we recognize we did the same things to characters on a tv show or in a book. We do become intensely attached and deeply concerned with another’s wellbeing. This is at the heart of what it means to be human. People who do bear witness to another’s illness or death in person or following on social media will need to grieve. Suffering and death are part of life; so too is grieving. I think parents of young people watching these videos are worried that their child is too attached and is feeling things too acutely. But here again, many parents of teenage girls express concern about how acutely these girls feel things. Some accuse girls of being overly emotional or histrionic. Instead, when a young person is so deeply affected by another’s suffering, a parent has an opportunity to talk about health, death, attachment, and grief. These are facts of life.