Social Media Support Groups for Pain Conditions

The endless road of pain self-management is an uphill climb, ridden with many challenges. Whether coping with the side effects of medication or struggling to get to appointments, pain management can be an enormous task. This is especially the case with chronic pain, for which no easy solutions exist. Pain management schedules can become exhausting and unsustainable, leading to burnout. This is why more people living with pain are looking beyond medication and common forms of therapy to cope with their condition. In particular, they are leveraging new channels of healing and pain management, such as social media networks.

Virtual pain relief

Ever since it arrived on the scene, the phenomenal wave of social media has washed over almost the entire world. Today, networking sites such as YouTube and Facebook have become an invaluable source of support for people with chronic pain. Through discussion groups, interactive websites that provide expert advice and portals that enable self-management, social media is serving as an effective form of “e-pain” relief.

Unsurprisingly, usage varies considerably by age group. Young Americans tend to be highly engaged in social media, with about 88 percent of 18- to 29-year-olds using multiple platforms, compared to 78 percent among 30- to 49-year-olds, 64 percent among those ages 50 to 64, and 37 percent in those age 65 and older.

According to pain medicine specialists Nicholas Karayannis and colleagues from Stanford University, social interactions significantly influence pain perception. The team found that social isolation is an inherent factor in the management of pain, and that the impact of pain is reduced in those who experience a sense of inclusion by engaging and interacting with others. Reinforcing this connection between social isolation, interaction and physical health, Martin Cheatle and associates from the Perelman School of Medicine, University of Pennsylvania, determined that social withdrawal can impact the experience of pain and may even be indicative of suicidal ideation in people with chronic pain.

One of the most in-depth evaluations of the impact social media can have on pain management was led by Mike Merolli at the University of Melbourne. The study involved an open-ended survey of social media users with chronic pain. The respondents used social media channels for information gathering and connecting with others who had similar pain experiences. Merolli explains, “The use of social media for chronic pain self-management was most positively correlated with improvements in sufferers’ ability to take in new information, enhance quality of life (enjoyment), develop relationships with others and participate in social activities.” The respondents expressed a reduction in anxiety, depression and emotional burden. They also expressed that social media provided them with freedom and anonymity, as well as a comfortable setting for discussions about their pain experiences. One of the biggest perceived advantages of this platform is its ability to transcend time and distance, enabling people to reach out from anywhere, across all time zones.

A double-edged sword?

Despite the clear benefits of social media for pain relief, it has been criticized for its potential to foster an unhealthy dependence on virtual relationships, which can make it difficult for people to develop and nurture real-life relationships. When a person becomes isolated and affixed to only virtual connections, he or she can lose the desire to reach out to physical connections for help. Pain management is effective online, but this does not mitigate the need for physical connections.

Another potential drawback to social media is the security and reliability of information shared over social media networks. Data sharing and commentary on such platforms are associated with considerable risk because they are largely unregulated and can lead to intrusions and violations of privacy. Furthermore, a study of arthritis-related videos on YouTube suggests that the majority are not associated with registered health-care professionals or relevant educational institutions. For social media to be truly influential, health-care professionals must leverage it for authentic information sharing. Until then, the potential of YouTube and other online forums for disseminating quality-controlled, evidence-based information that will aid pain self-management remains largely untapped.

Critics of social media often dismiss the concept of leveraging such platforms for health self-management purposes, highlighting the need for face-to-face consultations with health-care professionals. Certainly, social media cannot — and should not — serve as a replacement for medical treatment; however, as a supplementary network of support, its reach and power cannot be underestimated. The question is how online platforms can be used to gain the most benefits.

Advantage: social media

General support groups, pain foundations, larger global networking sites and online community journals serve as sounding boards, moral support and guides for people with pain. Such forums can work like a virtual balm for pain relief. In fact, many have gone beyond pain relief; they have worked as platforms for people living with pain to voice their opinions, share vital pain management guidance and both offer and seek emotional support. Some social media sources you might like to visit include the ones listed here.

1. GrowingPains.org

When children and adolescents are faced with the prospect of being “different” from others, the experience can be mentally isolating and depressing. Founded by the American Chronic Pain Association, Growing Pains is dedicated to young people dealing with pain. Adolescents coping with chronic pain can use this channel to share their experiences and provide support to one another, so they don’t feel alone with their struggles. The forum has evolved to provide peer support and education for young people with chronic pain and their families. This online support group is private, with a registration and login.

2. StupidCancer.org

Aptly named to convey a common expression of a person struck by cancer, Stupid Cancer is a leading online forum for young adults suffering from cancer-related pain. The channel facilitates the sharing of research, information and personal experiences through live events and digital content focused on mitigating emotional and social isolation, building a sense of community and providing critical clinical education.

3. Faces of Pain

Pain Doctor’s Faces of Pain forum allows people with pain to sign in, post memes and pictures and share their stories. The concept behind Faces of Pain is to “humanize chronic pain, to help others see that it is a very real condition that affects real people.”

4. Inspire’s Rare Disease Communities

With more than 250,000 members facing close to 3,000 different rare disease conditions, this is one of the largest online community channels for rare diseases. Rare disease pain sufferers can share their worst fears and any sense of alienation and frustration that comes from living with a painful condition that little is known about.

5. Surviving Chronic Pain

This moderated group leverages the power of Facebook to connect the global community of pain sufferers. In traditional Facebook style, it helps people share their experiences, tips on how to overcome the physical and mental side effects of pain and advice on seeking professional help. One function even allows you to search for clinical trials that you might want to take part in. Encouraging posts are added daily, part of the group’s motto “Together, we are stronger.”

6. MyChronicPainTeam.com

This site allows users to gain emotional support, resources for practical tips and even referrals to doctors from the community. It was developed by an independent, venture-capital-backed start-up based in San Francisco called MyHealthTeams. The dynamic is based on trust, with members providing support to other members by sharing posts and answering one another’s questions.

7. Spine-health.com

This forum provides resources for seeking treatment for back and neck pain and its related conditions. It is a unique portal in that all content is peer-reviewed by at least one member of the medical advisory board. It also provides frequent updates and information on conditions and procedures, board-eligible spine specialists and clinical trial information. To provide trustworthy information, none of the articles is written by companies, and therefore, the information presented is not biased.

Online patient influencers

Adding to this community of networked communications on pain-related themes are patient influencers. These are people and organizations that generate a stupendous number of followers on social media for the pain management messages they disseminate. For example, Barby Ingle from Washington suffered for years from a complex chronic pain syndrome. As she slowly learned to cope with her condition, she began to share her story through blogs, a book and then on social media channels. She eventually gained close to 30,000 followers on Twitter.

Boston-based company Wego Health came up with the idea to serve as a link between such influencers and the patient community. According to spokespeople at Wego, “Patient influencers are evaluated on the size of their Twitter, Facebook, Instagram, YouTube and Snapchat followings, as well as blog subscribers and impressions. Wego introduces pharmaceutical firms, medical device manufacturers, hospitals and insurers to such people. Those firms, in turn, pay influencers for access to their experiences, expertise and followers.”

Easing the pain online

The use of social media for chronic pain management is largely seen as a positive and powerful tool that can make a huge difference in the lives of those contending with pain. It is a critical cog in the health-care wheel, both as a means of patient and caregiver education and emotional support. Going forward, greater streamlining and expertise will be necessary to make such forums increasingly reliable and effective clinically. Equally, regulated content is a must to ensure that no one experiencing pain is ever subjected to misinformation or breaches of confidentiality. Studies and clinical trials will need to be far more large-scale to help us better understand the impact and potential of social media on pain management. Furthermore, videos and accounts posted online often tend to be directed at a clinical audience. Messaging must evolve to become increasingly patient- and caregiver-focused without losing professional or clinical credibility. This is especially true for pain sufferers within the rare disease and oncology communities.

Undoubtedly, social media offers a dynamic and powerful opportunity to self-manage pain and drive better health outcomes. Moreover, it is cost-effective and transcends the boundaries of time and geography, available whenever and wherever you need it.

Want to learn more about coping with chronic pain? Read “Your Self-Management Toolbox,” “Improving Quality of Life With Chronic Pain,” and “ACT for Chronic Pain.”

Nicola Davies, PhD, is a health psychologist.

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