My name is danah boyd and I'm a Principal Researcher at Microsoft Research and the founder/president of Data & Society. Buzzwords in my world include: privacy, context, youth culture, social media, big data. I use this blog to express random thoughts about whatever I'm thinking.

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using Facebook while ill

Yesterday, I received an email about one person’s Facebook usage that I felt the urge to share:

A little over 6 months ago, my stepmom was diagnosed with ovarian cancer. She is doing alright now, but during her chemotherapy she was isolated from friends and family due to a compromised immune system. She could still see people, but had to keep human interactions to a minimum. During that time, Facebook became this way for her to communicate and interact with the world. Being able to see pictures of friends and family and receiving comments would brighten her day. It was really amazing how she was able to adopt this technology temporarily and how valuable it became to her. As her life has returned to normal, she has had less time for Facebook. Originally, one of her friends had helped her create the profile, but it wasn’t part of her normal life. So now that things are more “normal”, she has talked about how it is hard to maintain her Facebook relationships.

In following up with the son, he shared an additional element with me that is also important: “Even though she is older, she has friends that are college age that she knew through her religious activities. So most of the people she was talking to were of college age. But as the technology becomes more pervasive among older generations, I could totally see being able to communicate with a broader range of friends.”

What I find so compelling about this account is that it is a reminder that in-person encounters are not always possible or ideal. Geography isn’t the only limiting factor. I’m always intrigued to hear stories of people with disabilities using the Internet to build connections that were otherwise impossible for them. Likewise, it’s astonishing the role that the Internet plays in helping people who are ill.

I’m also reminded of all of the awkwardness that occurs when illness gets in the way of friendship and the role that technology can play. In this case, the woman is unable to see her friends frequently. But there’s another layer here. When someone’s sick, the topic is always hanging in the air. In some cases, it’s always the topic of conversation. In others, it’s a difficult subject to broach. Back when I was studying blogging, I spoke with an HIV+ man who told me that he started blogging so he could let his friends know about his health. He had found that there was no comfortable way for them to ask in social settings. “Can you pass the ketchup? Oh, and how are your T cells?” didn’t quite work. Likewise, there was no good way for him to bring it up without creating awkward moments. So he decided to anonymously blog about his illness. His friends could get a sense of how he was doing and he could share it and everyone could look when it was most appropriate for them and their in-person interactions could have a more sane cadence. One huge challenge in being sick is figuring out how to participate “normally” in social settings. Mediated interactions can often be quite valuable in this regard.

There are many other important nuggets in this account. Technology’s value is often dependent on where one’s at in their life. Inter-generational relationships can be enhanced through these tools. Social awareness can be tremendously fulfilling (and should not be seen as purely vacuous). I don’t want to go into a proper analysis here, but hopefully this story makes you think.

Anyhow, I like being reminded of how these tools fit into people’s lives in different ways and I thought maybe you would too. Oh, and if you have a story of your own to share, I’m all ears.

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14 comments to using Facebook while ill

  • ABC tv in Australia last year looked at the issue of what we post online and talked to Australia’s biggest mySpace user who also started her page due to illness. The episode is here. http://www.abc.net.au/triplej/hackhalfhour/programs/s2359534.htm hope you can view it outside of Australia.
    David

  • dana… you may want to take look at Aidpage (www.aidpage.com). [discl.: I am a co-founder].

    Take time to read through enough posts to get a feel about what people get from Aidpage… and why some of our active “aidmates” participate on a daily basis for years already. It is not so evident or easy to pinpoint. And it definitely is not “for the money” (we have an ad revenue sharing program). It is much more about the elements you discuss in your post.

  • An excellent example of how so many people can proactively use social media and other online tools to feel better emotionally even when they feel awful physically. I hear so often from my readers that connecting with each other online literally saves their lives, helping them feel part of a community even when they are physically isolated. The rapidly increasing use of Twitter is propelling this idea forward, too. Thanks for sharing this concept and reaffirming the work that many of us are doing to connect sick folk and keep them AWAP (as well as possible)!

  • kethryvis

    an irc channel i am/was a moderator of [i’m on hiatus from the channel currently] has a guy in there who has been there a bit longer than me. he is basically a shut-in; he’s disabled physically (many hospital stays, walks with walkers, etc), works from home, has no friends in the area and depends on his family for help. the channel is basically his only means of human interaction on any sort of regular basis.

    however, he’s somewhat of an outcast; being your typical geek-with-few-social-graces coupled with (i assume, but ianap) an extreme need to fit in and be liked, plus sometimes being compromised by strong pain medications, he often says and ‘does’ (through the /me command) things that are not considered appropriate by people in channel; as a mod i have spoken to members who have complaints about his actions. he also fixates on those of us with pets; asking constantly many times a day how our animals are and what they’re doing which gets old and frustrating. however, he continues to come back. i’ve always been fascinated by this; both academically and personally. most of us feel badly for him which is why he tends to get more leeway than anyone else. channel member frustration, however, sometimes boils over causing confrontation. as a mod, i never quite know how to react; on the one hand, i would hate to be responsible for him losing his human interaction (which is somewhat ironic to me in my current state). on the other hand… he frustrates me constantly and i get tired of him. it is a conundrum for me.

  • My late mother-in-law, who died of AIDS, had online and in-person communities that sustained her through the illness: an email list, an online Scrabble club, and her church (Latter-Day Saints) really helped. She blogged for the last five years of her life. I think she found it a useful way to let her family know about her declining physical condition. In the last weeks, her close relatives used the blog to communicate with more distant relatives.

  • My dad is undergoing radiation for thyroid cancer, and he is in NJ while I and my 5-year-old son are in CA. It is hard not being there while he is going through this, but we now communicate with him often using video Skype, and it’s so reassuring to be able to see him.

  • Brian Estes

    Some wounded soldiers find that social media helps them stay connected to their friends, family, and deployed comrades while they are recovering in the hospital. It can do wonders for their mental health.

  • Fati.m.a

    Hi, I am in first year of Ph D research on SNS in Visual sociology. My recent asthma attack left me bed ridden for a week. I am already away from family , as I am in Paris, not such a charming city when it comes to friendship. In my convalescent period I found Facebook a great help aswell. I normally use it to communicate mostly with my research supervisior. One main feature of this SNS that I like the best and am researching on, is the ease of changing your profile picture. Feeling miserable, I uploaded and posted two ventolin inhalers (my medication) as my profile pic. Friends from all over left messages, even my school friend called me up all the way from San Fransisco to wish me health! I find changing profile pics a big relief in expressing and sharing my feelings!

  • M-H

    Danah, my late partner was bedridden in hospital for most of 2002 (she died at the end of October of that year). Her ‘lifeline’ during these months was the conversations she was able to have by email with people in the US and the UK during the long nights when she couldn’t sleep. She was also able to email local people, of course, but, oddly, they weren’t usually as responsive to her as those at a greater distance. About half of her funeral service consisted of the reading of tributes from these friends overseas, many of whom she had never met irl.

  • Sure Facebook is a great way to stay in touch with people scattered all over the world and a source of comfort to people, who are ill and are seeking human contact, when the actual one can take place.

    But judging by status postings on FCB, most people are using it as a “self-promotional” tool, stating “XY is going to Paris this week”, “XY is looking forward to a weekend in a spa” whatever, or as a boost by revealing something self-deprecating, yet funny, to which people get teasing comments.

    I can imagine writing “I have a flu” and the comments wishing me well would mean a lot. But, can you imagine anyone writing that they were dumped by their partner, that he/she got fired, that instead of having an illness like flu or cough, someone writes “I have been diagnosed with a terminal disease”.
    We want to present ourselves as happy, content or even ironic in social media, but sometimes the reality of our lives simply does not fit this mold.

  • Hi danah,

    I love what you are doing!

    concerning this post, this aspect of online communications is what is so cool, the potential to communicate with others regardless of gender, age, disability, creed, etc., it brings a previously dispersed society closer together.

    we are raised to prejudice what we don’t relate to because it doesn’t fit in with what we understand. When I started to understand the magic of the value that social networking sites such as Facebook could bring into the lives of many, that are often disadvantaged in the real world, I became very excited!

    i have just published a book “Virtual Shadows: Your Privacy in the Information Society”, you have been quoted quite a few times in the book. I hope you check it out. It is light reading and positive, target audience is anyone that can read and is interested to learn more about how things work today. Please drop me a line, would love to link-up, it has been a pleasure reading results of your research whilst writing my book.

  • There are a couple of other specific web/social media services for people with illness or undergoing treatment (or families of those people) that I’m aware of, and I think they’re really important for other people to know that they exist. My family was referred to CaringBridge last year during a period of intense family crisis: http://www.caringbridge.org/
    (Another service I’m aware of is CarePages, but I haven’t experienced it personally: http://www.carepages.com/)

    CaringBridge is a free, non-profit service, and it really was a lifeline for my family. It allowed us to connect with our family and friends spread out across ages and geography. It took the crushing burden and repetition of communicating individually off of my immediate family, so that we were able to keep our collective network informed in one place at one time, and receive collective messages of support from our network. Other than an initial email to everyone to let them know about the site (including password information – we wanted it to be private), all of our communication went through the site. It was an amazing gift to us during a very dark time.

  • I share your fascination, I have found texting for counselling being described by young people as the medium chosen because they wouldnt dream of saying this stuff out loud.
    Congratulations on completion of your studies, I hope one day to be there 🙂

  • These are great examples of how the de-contextualizing and de-localizing effects of social media can have a really positive impact. In the neutral space of social networks, people can broach topics that might be awkward in physical interactions and can connect when physical interactions are impossible. People who condemn social media (like Lady Greenfield) should look to these uplifting examples of the power of these emerging technologies.