Reframing MS: The Role of Support Groups

An author whose life has been heavily impacted by multiple sclerosis (MS)—through her mother and her paternal grandmother—has written in Qualitative Research in Medicine & Healthcare about her impressions of support groups’ potential importance to individuals with this or other chronic conditions.¹

Her ideas are backed by previous research, but her boots-on-the-ground approach, with access to a Southern California support group, allowed her to make novel observations about 2 factions often at odds: members and the representatives of pharmaceutical companies (sometimes including physicians) who regularly host tempting restaurant lunches to have something of a captive audience for their presentations about relevant drugs. Her other major focus was describing how societal narratives about illness and disability—particularly about chronic disabilities—influence how individuals with MS view themselves and how medical professionals and the rest of society view them.

Among the lessons the author learned from her ethnographic study, she noted, is just how important support groups, and other supportive organizational structures, can be to provide “counternarratives of empowerment” to people with disabilities (PWD). These are in contrast to “master narratives,” in which PWD can, in the author’s framing, feel forced to some degree to present “a sense of ‘normalcy’ for others, rather than [have] others adapt to alternative ‘norms’ or ways of being in the world.”

Additionally, in support groups, PWD can “renegotiate identity, in which new forms of self can develop external to the dominant discourse”—the latter defined as what the wider world sees, believes, and thinks they know about a condition like MS, the author pointed out.

Pharma representatives and physicians have a lot to learn about the real lives and culture of people who have disabilities, especially those with MS. | Image Credit: © Rawpixel.com-stock.adobe.com

She agreed with previous research conclusions that neither a purely medical model of disability/illness nor a purely social model serves the best interests of PWD.² A cultural model, however, recognizes disability while not ignoring the ways and degree to which social obstacles and biological capacities impinge upon the lives of PWD. Relatively all-encompassing, this model incorporates a wide understanding of the ways in which those differences come to bear on how PWD experience their environments and their bodies.³

What the author gleaned from her attendance at several pharmaceutical company–sponsored meals and from her interviews with support-group members who have been at many is that pharma representatives and physicians have a lot to learn about the real lives and culture of PWD, especially those with MS.

The reps, in effect, offered that master narrative, “which perpetuated the notion that the [participants with MS] could be reduced to a set of symptoms that should be fixed, without accounting for the complexity of their character and identities,” the author perceived. “Undoubtedly, this could easily influence support group attendees, yet what I observed emerging is a counternarrative of resistance…support group attendees acknowledge the master narrative intentions of the doctors and pharmaceutical representatives, and counter this by blatantly resisting those intentions while taking advantage of the luncheons hosted for them.” The members not only connect over disdain for the pharmaceutical companies’ profit motives, but they use those motives to fuel their own group identity and sense of community.

Aside from their confederation in anti–pharmaceutical industry attitudes, the members of the support group examined by the author bond over more important matters: “No one [with MS] feels left out because we are inclusive. I feel so welcomed,” explained one enthusiastic member. People are not afraid to talk about [any]thing, and [they] care about each other. It helps me.” The message that remains with her, said this member, is “Stay positive no matter what gets you down. Keep that positive bubble around you.”

The author’s concluding challenge to communication and disability scholars was to continue revealing counternarratives of resistance among support groups. Her research was conducted prior to the COVID-19 pandemic, and she acknowledged that many groups now meet virtually and that sponsored luncheons may be fewer.

“This alternative [virtual] space provides a [separate] area for inquiry, however,” she noted, “as it allows those with chronic illness and disability to access meetings from home without the added mobility barrier.”

References

1. Johnson AK. MeSsy identities: an ethnographic exploration of a multiple sclerosis support group. Qual Res Med Healthc. 2024;8(2):12175. doi:10.4081/qrmh.2024.12175

2. Siebers T, ed. Disability Theory. University of Michigan Press; 2008.

3. Snyder SL, Mitchell DT, eds. Cultural Locations of Disability. University of Chicago Press; 2006.