Not Your Average Support Groups: Survey Examines Role of Social Media in Chronic Pain Management

A global online survey suggests social media support groups are useful for information seeking and alleviating feelings of isolation among chronic pain sufferers.

Social support is a commonly recommended method of managing chronic pain. In fact, joining a support group is #5 on WebMD’s list of 11 ways to manage chronic pain.

But, when every single day is a fog of intense pain, seeking social support is rarely a priority. Getting out of bed is a challenge for many chronic pain sufferers. Keeping up with daily tasks (i.e., those associated with parenting, work, and home life) can be monumental. Making time for extras, such as early morning or evening support group meetings, is a luxury many living with chronic pain cannot afford.

A World of Pain

When looking at pain statistics, it’s important to remember that there are a variety of definitions of what constitutes chronic pain. Chronic pain can be defined as a complex bio-psychological phenomenon that relates to the experience of pain every day for three months or more. Whether arising from an acute injury or an ongoing illness, chronic pain persists longer than expected, and can lead to or co-occur with sleep disturbances, as well as changes in appetite and mood.

While some define chronic pain as pain that lasts beyond the usual course of disease or expected healing time, others refer to pain as chronic when it is experienced daily for a period of at least three months. This discrepancy may account for the wide range of prevalence (2-40% of the population) reported by one literature review.

In an Australian study, 22% of Australians experienced chronic pain. There were significant gender differences: 17.1% of males experienced chronic pain compared to 20% of females. For females, chronic pain was most prevalent between the ages of 45-60.

The Australian study, conducted in 2007, estimated the economic losses due to chronic pain at $10,847 per person with chronic pain. Individuals bear 55% of the costs, followed by federal government, at 22%.

Looking at statistics from other countries, it appears that roughly 1 in 5 of adults suffer from chronic pain. These findings are in line with the Australian study. Also a global trend, older adults and women are more likely to experience persistent pain, according to the American Pain Society.

Web 2.0 for Chronic Pain Sufferers

For those who experience pain daily, the emergence of Web 2.0 and its social media outlets have begun to change the nature of support groups. The American Chronic Pain Association emphasizes the importance of getting support from others who’ve experienced chronic pain to reduce feelings of isolation. These supports can now be found from the convenience of a patient’s home, and at all hours.

To better understand the use of social media in the self-management of chronic pain, researchers from the University of Melbourne surveyed social media users with chronic pain. Significantly more females than males participated in the survey (85% female), and those aged 40-60 represented 48% of all respondents.

The survey included open-ended questions that gave respondents the opportunity to comment on their experiences in their own words. Analysis of these responses yields central themes related to patients’ use of social media.

Social Media Support: Anonymous Help Available from Home, at Any Time of Day

Respondents reported that they used social media to seek information, connect with other individuals with similar health issues, and to share their experiences. In addition to a reduction in self-reported symptoms of depression, anxiety, and the emotional burden of illness, according to lead investigator Mike Merolli, social media use for chronic pain self-management was most positively correlated with improvements in the following abilities:

• taking in new information
• enjoyment of life
• developing relationships with others
• participating in social activities.

Unlike in-person support groups, where experiences may be associated with one’s identity, participants enjoyed the anonymity and autonomy they experienced in social media discussions about their chronic pain. While chronic pain sufferers sometimes feel like a burden to their family members, respondents to this survey were able to validate their experiences with people outside their daily lives.

Survey respondents were at least somewhat concerned with the level of privacy and safety of their information online. However, this was offset by the ability to interact with people and find social support when and where it was convenient for them. Especially for those who reported sleep disturbances, social media support provided a sense of geographic freedom and the opportunity to connect with people at all hours of the night.

Much like in a more traditional support group setting, sharing experiences on social media allowed respondents to learn how others manage pain. One respondent noted: “It is very helpful to share stories, symptoms, and problems with other sufferers.”

Sharing experiences led to a sense of personal satisfaction and self-worth that chronic pain sufferers, especially those who are homebound, might not otherwise get. Sharing symptoms, challenges and successes on networking sites gave respondents a sense of usefulness; they wanted others to learn from what they endured.

A small proportion felt that they needed to be careful in forging virtual relationships because they can lead to difficulty maintaining real-life relationships. That is, virtual relationships are not an exact replacement for—and may even inhibit the formation of—face-to-face interactions.

In moderation and sprinkled with some face-to-face interaction, however, it appears that social media support groups—whether on Facebook, Twitter, or maintained by a healthcare provider—make a significant difference in the lives of those suffering from chronic pain.

Jenn Lonzer has a B.A. in English from Cleveland State University and an M.A. in Health Communication from Johns Hopkins University. Passionate about access to care and social justice issues, Jenn writes on global digital health developments, research, and trends. Follow Jenn on Twitter @jnnprater3.