Over the last decade, social media has become an incredible tool for exchanging ideas, enhancing health education, improving communication, and promoting advocacy and behavior change. Because daily life decisions can impact overall health and wellness, it should come as no surprise that social media has become a powerful platform in the prevention and improvement of chronic diseases and their symptoms. Social media is more than Facebook, Twitter, Instagram and YouTube; it’s also message boards, blogs, and microblogs. For many, these venues have provided chronic pain patients with a chance to break down walls that tend to isolate them from other people. This channel for peer-to-peer communication undoubtedly increases emotional support and empowers others to achieve their desired level of pain management care.
Unfortunately though, more than any other group, people living with chronic disease remain strongly connected to offline sources of medical assistance and advice:
- 93% of adults living with chronic disease ask a health professional for information or assistance in dealing with health or medical issues
- 60% ask a friend or family member
- 56% use books or other printed reference material
- 44% use the internet
- 38% contact their insurance provider
- 6% use another source not mentioned in the list
Like all forms of technology, social media is neutral: it can be used for healthy and unhealthy purposes. The good news-research has shown social media can be a meaningful addition to many suffering from chronically ill issues.
Health forums such as Inspire and PatientsLikeMe can be especially helpful because they allow patients and healthcare providers to share important information such as news relating to clinical research and drugs. They can also foster the formation of caring friendships with those who understand a particular condition, often providing encouragement, personal accountability regarding treatment, treatment tips and inspiration. According to one Inspire contributor, “The health community I’m part of helps because I am understood — the struggles, the pains, the mysteries, the hard road to getting appropriate medical care and treatment, the disappointments and despair, and the quirky triumphs. I love sharing the triumphs, some of which would be meaningless to others. I also feel useful when I can support and offer assistance in any way to my fellows, and that is very important to my self-esteem.”
Challenges with social media usage:
In forums, for example, it can be difficult to find accurate information. Unless there is an active moderator who checks facts, what is shared is often “folk wisdom.” “The Internet is full of anecdotal data, not systematic information,” explains Portland, Ore., psychologist Joseph Rhinewine, PhD. “When you go into a forum or other online group and ask, ‘What medication should I use to treat my fibromyalgia?’ you’re going to get people’s opinions. That means nothing for you personally. A study of one is scientifically untenable.” And often dangerous- what is appropriate for one person can be harmful to another. Although it’s great to have so much data at our fingertips, it’s important to seek the guidance of a trained medical professional to put it in perspective with your own individual issues and needs.
Risk of over sharing:
Craving attention and seeking affirmation from outside sources is common; patients want to let others know they’re struggling in the hope of finding options. Emotional relief is often found in forums and online support groups that connect people with the same disease. Each person must determine their own motivations for posting. That might seem subjective, but there are questions to ask yourself before publishing your thoughts for the world. First, are you using social media too frequently? “If you believe you’re using it in excessively, then you probably are,” says Dr. Rhinewine. It’s important to understand, he adds, that excessive social media usage can cause depression rather than provide comfort. It’s also imperative when using social media, to keep any and all personal or financial information private and establish privacy settings. This may seem like a no-brainer, but over time you may meet other pain patients and develop meaningful relationships. Although these feelings are great for establishing a sense of belonging and community, it’s still vital to put your safety first.
Too much social media:
“With chronic illness, one of the things that can be corrosive about social media is the fact we often begin to identify with our disorder,” explains Dr. Rhinewine. That becomes our sole focus and begins to define every aspect of our lives. There’s no question chronic illness has a major impact on our identity but it is not who we are. We must acknowledge and understand we are so much more than that. Online forums are helpful in many ways, but they can also strengthen the tendency to over-identify with an illness. It’s wonderful to share, learn, hear others triumphs and issues but we also have to transform that energy into something more meaningful and positive outside the online world. Kathleen Franco, MD, a psychiatrist at the Cleveland Clinic, recommends if family and friends believe that someone is focusing only on their illness and not their other good qualities, then help them to see themselves in another light. Ask them to go out and do something: take a walk, volunteer at a charity, work with animals, take a class — anything that could help them stretch their perspective beyond themselves and their situation.
Chronic pain apps:
I’m not so sure I’m an advocate of tracking every minute of your pain because it may increase focus beyond what’s healthy. But documenting triggers and identifying trends over time can help to figure out which medications and treatments are working, and even potentially learn more about what’s causing your pain. That’s where apps can come in handy — you can update it wherever you are and email or print entries for your provider. CatchMyPain is one of the most well-known pain apps not only for its helpful features but also for the way in which it builds community. It has a forum feature that connects chronic pain patients to each other. Other pain tracking apps, many of them free or for just a small fee, include Chronic pain tracker, GeoPain, MySymptoms, and YearInPixels.
Overall, social media acts as a convenient and easy way to access social support and information on a multitude of topics. It has been recognized to provide psychosocial benefits in reducing loneliness and anxiety and helping with the acceptance of pain. More specifically, it can reduce a sense of isolation through mutual sharing of individual experiences, promote health-related actions and encourage the use of adaptive coping strategies. When used appropriately and safely, it can be a powerful tool when added to other pain relief regimens.