Health Is Social

Infusing Social Media into Healthcare

Will Social Media End Stigma in Health?

It’s an interesting question, given the origins of stigma.

You see, stigma is a social creation. The simplified version is something like this:

  1. The symptoms of a disease scare or mystify a group
  2. The group doesn’t understand (or doesn’t want to understand) what’s happening
  3. Ignorance, misunderstanding or fear create group tension
  4. The group seeks collective self-assurance or release in shunning
  5. The group needs a symbol of the shunning – a stigma

If you examine the history of stigmatized diseases, you’re likely to find this pattern. In fact, most of the stigmatizing wasn’t against “disease”, because whatever was stigmatized wasn’t identified as caused by biological factors.

You would think, however, that as societies gain knowledge via science and inquiry, that stigma would decline. And yet stigmas abound.

In our time, what effect do media have on social behavior? Specifically, will the use of social media enable the break-down of stigmas?

Might a benefit of social media be that people will find a mode of public facing where they can seek relief from the shame of stigma?

Silence has long been a fuel for stigma – traditionally, if the victims of shunning and stigma spoke of their suffering, their social groups would tighten the grip of the stigma.

Today’s media – perhaps because people can seek and find social groups beyond familiar ones – may just provide opportunities to assault the problems of shame and stigma which inflict such cruel punishment.

I’m wondering if any organizations are studying this aspect of health and media.

So, what are you thoughts? Will social media help to end stigmas? Or might they create new kinds? (Reminder: what has the power to heal has the power to destroy, and vice versa.)

@PhilBaumann – @HealthIsSocial – Newsletter

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  • Interesting question indeed, and I have no idea if any organizations are studying this.

    I think yes — people through social media have much potential to curtail stigma of certain illnesses by connecting across time and space in a way not previously possible.

    We are already seeing communities forming around certain stigmatized illnesses. Social media offers anonymity (which of course is often a really bad thing), and people are blogging and tweeting openly, providing social support to one another, discussing stigma, and engaging in activism with larger organizations who are working to fight stigma. All of this begins to release that “elephant in the room” and makes it easier for people to talk about their experiences instead of hiding them in shame.

    Whether any of this spreads to people beyond these small communities remains to be seen. Maybe it will eventually. It has been my experience that you have an existing interest in a stigmatized illness and so seek groups out rather than vice versa, but these communities are surely a start.

    People do seem to stick to their own cliques in social media, though. And all the while those beneficial conversations occur, those ideas that contribute to stigma can wild fire spread even more quickly (look at the social media comments characterizing psychiatric illnesses we saw during the Arizona tragedy).

    • Hi Erica,

      You know, I didn’t even think of the Arizona shootings when I wrote this, but that’s a great point about how these media could reinforce stigmas.

      Still, I do think you’re right that they may help to break-down stigmas and help to foster the kinds of communities which relieve the shame and silence.

      Perhaps we won’t know for sure until the use of social media scales worldwide, and people become more comfortable sharing their experiences in public (or specialized publics).

  • I am not convinced that stigma will be reduced by social media as you don’t have to look hard for individuals hiding behind the anonymity of an anonymous user id to see plenty of ignorance on the web. You also don’t have to look far to see rather “twisted” minds getting together to promote their vision of reality.

    What social media allows is for like-minded people and those with a similar interest or concern to find one another. As a result, social media can work well to bring together people with a given medical condition to provide support for one another.

    However, does a forum of people all having rheumatoid arthritis make them more sympathetic to those with mental illness. I would doubt that. Interesting discussion in any case.

    • Hi, Jason

      I think you make good cases here, especially about like-minded people.

      @Erica raised the Arizona shootings as an instance of spreading the same old stigmas.

      So maybe, there isn’t so much a yes/no answer, but rather a shifting in the power and position of stigma.

  • I had this very stigma/sm convo with Hearing Society – and we’re now planning a communication strategy that takes advantage of sm to address, and hopefully ease strangle-hold of hearing aid stigma. Part of plan is to study exactly that: impact of sm on health.

    I think it’s too cool that the power of sm connectivity, based on reading, is particularly relevant to hearing impaired. (I learned that 20% of referrals for Alz evals result in identifying prob as hearing loss )

    Thanks for thoughtful post Phil
    Kathy

    • @KathyKastner I’d love to hear about the results of the strategy. Would be a gr8 case study!

  • You raise an interesting point here, Phil.

    Yes, I think that many patients would be more comfortable talking about their symptoms and some conditions knowing that other people have them too. When I was practicing medicine, it was not uncommon for patients to say they felt embarrassed, or to think they were the only ones to have a particular problem. In this regard, social media might help a lot.

    • The shame issue but be where social media may help.

      It may take time – and will probably also require the input of healthcare professionals who are have charismatic personas online.

      It’s yet another reason to get professionals online to share their knowledge.

  • Wow, interesting. Puts me in mind of how cancer had such a stigma years ago that no one would even mention it. With breast cancer at least, it’s almost gone too far in the other direction. I’d be happy if we could remove the stigma from other diseases without turning it into the equivalent of the Christmas retail season.

    I do believe social media can help. I’m struck by the way people reach out to each other and offer comfort through these avenues. It’s still kind of a peer to peer thing but think of how many people had no one to turn to at all, or may not now thanks to being in a rural area or just shy. How that crosses over to one’s offline community I’m not sure except perhaps through exposure, and good and hopeful stories going viral. I think we win over stigma one person at a time.

    I think the acid test will be mental illness. I was a mental health worker in the 80s and it seems as misunderstood and feared today as ever.

    • Good point about breast cancer. Yes, there can be an overswing from one end to the other, but that is probably to be expected.

      I think the stories people tell and their willingness to share experiences does help – but I do think context and the behavior of others will play a part.

      Brain disorders, psychological and psychiatric health definitely would be the acid tests. Those are the pathologies that have the sharpest, biting stigmas attached to them.

      It’s definitely something to watch and see how it plays out.

  • I think that social media if approached from a human rights perspective almost nulls and voids any room for stigma. Nice piece Phil.

  • I think that social media if approached from a human rights perspective almost nulls and voids any room for stigma. Nice piece Phil.

  • I think that social media if approached from a human rights perspective almost nulls and voids any room for stigma. Nice piece Phil.