Feeling alone, sad, and lost without a sense of direction is not an unfamiliar experience for anyone. These feelings (even when surrounded by family, friends, co-workers and others) are not uncommon when living with chronic disease and persistent pain. They can occur at any time; holidays seem to make it more noticeable. Sometimes you just need to reach out and know that someone is there who understands, whether it’s the middle of the day or deep into a sleepless night.
The promise of connectivity through social media (SM) has been a useful tool for many who experience isolation. Internet tools are diverse for users, allowing us to search for information, join and actively (or passively) participate in various online communities, sharing information, voicing opinions, posting photos and videos, either publicly or privately to select “friends or connections”. And, there are so many different types of platforms such as blog sites, podcasts, and social networks like Facebook, Twitter, Instagram, LinkedIn, YouTube and Snapchat. Connections can be good.
According to DiMartino et al (2017) in an article discussing the use of SM in healthcare… “patients are increasingly active online, and they are frequent SM users for health purposes. In 2015, it has been estimated that 62% of entire adult population of the USA uses Internet and 72% of adult Internet users use Facebook; in a previous survey, 72% of Internet users say they looked online for health information within the past year. Different SM attract different age groups, and for example, blogging has become less popular among teens and young adults and more popular within older adults. Similarly, there are differences in SM use depending on gender, race/ethnicity, education, and income characteristics.”
Connectivity with online communities has been popular for people who live with pain for decades. There are many online communities that support us. Examples include Friends in Pain, Chronic Body Pain, Surviving Chronic Pain and there are many others on Facebook, #chronicpain is on Twitter, The Chronic Life on Instagram, The Star Online for Teens on YouTube. Nonprofit organizations dedicated to pain, like The Pain Community (TPC) or specific diseases, like The Ehlers Danlos Society, as well as private organizations or healthcare professional services. Online support is available in a variety of ways. The options can be mindboggling and difficult to select.
Here are some thoughts to mull over:
- How reliable is the information being shared on the platform or community?
- How private and protected is personal information?
- Is the community monitored to avoid mis-information, bias or use by others attempting to sell a product?
- Will opinions or comments be respected by others in the community?
- Is there an option to sidebar and share with select members (a private meet-up) compared to the entire community?
Whether you are a veteran or new to participating online, these questions may cross your mind.
I have been struggling over this love/hate relationship with SM for the past few years. There are many reasons. The idea of freely sharing personal thoughts and ideas requires trust and respectful exchange with others is one of them. I have not always found that participating in a public forum means they’ll be supportive. I have shared this struggle with respected colleagues and friends of late, thinking about how to better support members of TPC.
Here is a suggestion.
I’ve come away with these thoughts: we have to participate in communities and platforms where we have trust. In the TPC’s online community, know that if you ever you need a private, protected place to share, suggest an online meet-up. Choose the date and time, what works best for each of you, and jump in. It does not have to occur during the times when chat is moderated. Come in a share with each other; speak your mind, ask your questions, talk freely. Enjoy the best of both worlds. Most of all–stay connected.
What do you think? Your impressions of this blog and additional suggestions are welcomed.