Next month, I’ll be giving a short presentation at a workshop focused on how people with chronic illnesses use the internet to share their stories and connect with others. Perfect, right, for someone who just went to the Food Allergy Bloggers Conference and connects with folks in the food allergy community on Twitter?! Scholars at this conference have backgrounds in studying illness communities, attitudes toward health-related technologies, how people use internet technologies, and how gender and feminism interact with the use of such technologies (i.e. online illness communities are often dominated by women).
(The technical description goes (in part) like this: “This colloquium addresses the productive capacities of illness, disability, death, and dying, asking how individuals use online platforms or other forms of new technology to both reproduce and contest popular discourses surrounding these everyday phenomena.”)
To get started writing this presentation, I’ve been trying to mentally catalog some of the ways that the internet is used by, and useful for, the food allergy community. Here are some of the things I’ve come up with:
- It’s a way for local support groups to give members a place to connect with each other that doesn’t require the same level of logistical planning as holding monthly or bimonthly in-person meetings.
- It’s a way for support groups to have a much greater geographical reach.
- Online support groups can take a variety of forms, from the support forums run by Kids with Food Allergies to Facebook groups where food allergic adults or parents of allergic kids share advice, news, and stories.
- Online connections can lead to in-person friendships and vice versa. Online and “real world” communities overlap and intertwine. From a research perspective, you can get the best understanding of community values and culture from interacting with people in both settings.
- Sharing news and views online perhaps makes it easier for the community to speak with a common voice in advocacy projects. It makes it easier in particular for grassroots advocates who might have a harder time accessing national advocacy news without the internet. For example, people in California who are trying to passing a stock epi bill can easily network with people in Massachusetts and Florida where food allergy legislation has moved further along to find out what techniques or rhetoric is most effective.
- The potential audience for online writing is obviously much larger than a printed newsletter. It’s very easy to amplify messages that make an important point though linking to the post, posting it on Facebook, sending it around listservs, and sharing and retweeting on Twitter. It is also easier to amplify the voice of the entire community, through amplifying certain messages, but also through letter-writing or petition campaigns that are publicized online.
- The ease of finding useful information and personal narratives related to food allergies helps newly diagnosed people feel less alone and adjust to their new lifestyle much more easily than was the case, say, in the early 1990s.
- Online platforms offer food allergy-related entrepreneurs lots of opportunities to build their brand and promote their products or services. It’s notable that many of them are women motivated by improving life for their kids and other families dealing with food allergies.