Comments on: using Facebook while ill

By: Kelsey

Kelsey — Wed, 25 Mar 2009 15:52:23 +0000

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.

By: ailsa haxell

ailsa haxell — Wed, 04 Feb 2009 00:16:45 +0000

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

By: Laurel

Laurel — Tue, 03 Feb 2009 12:01:46 +0000

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.

By: Karen Lawrence �qvist

Karen Lawrence �qvist — Sun, 01 Feb 2009 03:55:33 +0000

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.

By: popkitchen

popkitchen — Fri, 30 Jan 2009 03:25:41 +0000

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.

By: M-H

M-H — Tue, 27 Jan 2009 22:03:27 +0000

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.

By: Fati.m.a

Fati.m.a — Sun, 25 Jan 2009 01:10:32 +0000

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!

By: Brian Estes

Brian Estes — Sat, 24 Jan 2009 19:12:21 +0000

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.

By: Shara Karasic

Shara Karasic — Sat, 24 Jan 2009 13:51:49 +0000

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.

By: Sumana Harihareswara

Sumana Harihareswara — Sat, 24 Jan 2009 13:05:30 +0000

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.