If you are anything like me during my early rheumatoid arthritis (RA) days, you probably have lots of questions — ones that keep popping up at the craziest times of the day. You decide to turn to social media to get some answers. But wait! Let me share a few tips that I have picked up over the years, as well as advice from those in our community.
Social media (Twitter, Facebook, Instagram, and Google+) is a great place to seek out others who are going through a similar experience as you. However, just a word of warning: social media can easily consume your life. Please remember to set your phone aside from time to time or turn away from the computer and be present in your real life.
Pick your platform
With so many choices out there, I find it easier to have one platform I use regularly and others that I visit on occasion. This helps me to not spend all my free time keeping up with the lives of others or allowing my RA to take over my life. As you become more familiar with social media, you might want to look into websites such as HootSuite or SocialJukeBox to schedule all your posts at one time.
Also, know your purpose for using social media. Some people use it for support only. Others use it to promote a blog or website. Knowing what you want to accomplish will help direct the time and energy spent. Additionally, think before sharing.
“Be comfortable with what you share. Sometimes (social media) feels like an intimate conversation, but once out there, it is public.” — Drichards, Twitter
We each have our unique story to tell. When I first started on social media, I believed my life with RA was doomed based on the stories of others. It isn’t. Don’t let the perspective of others determine your RA journey.
“Don’t read too much or get too wrapped up in what others may write. Take what you can use, let the rest go, and take breaks from reading and posting. It’s ok to relate to others and feel empathetic, but don’t live in a negative headspace. We all have our moments, but everything in moderation.” — Kristina, Facebook
Find like-minded people
Over the years, I have joined Facebook groups that focused on an extended RA issue I was dealing with such as exercise, family, or sex. However, my personality type, an introvert, tends to lean toward making a few good friendships rather than needing constant feedback from a large pool of people. Know your personality type. It’s okay to need lots of people in your circle or just a few close intimidate friendships.
“It’s ok to join large support groups, but use them to develop close friendships with a few likeminded people. Then you have someone to private message rather than baring your soul to large groups of unknown people. The stress of being too involved with large groups of other spoonies can be overwhelming when you try to help everyone.” — Sally, Facebook
When posting, hashtags are used to bring focus to the topic you are writing about. A few good ones that are often used in our community are #rheum, #chronicillness, #chroniclife and #spoonie.
“Definitely use hashtags to your advantage. They are a great way to find others with #chronicillness. Don’t be afraid to check out patient chats. Even if you lurk, you can find great advocates to follow.” — Rie, Twitter
When you do find others you connect with, don’t be afraid to “like” or reshare posts. As long as you give credit, most of us love the extra attention. Plus, it helps people to notice you, building more connections. Remember to not share information in private messages or private Facebook groups, unless you ask permission from the poster.
Don’t hesitate to unfollow
If you find that you have started following an individual or group that is zapping all your energy, let them go. There are so many amazing advocates on social media that it is important to find those who nourish your soul rather than leave you feeling upset and exhausted.
Know your sources
There will always be “magic cures” for RA. Always be cautious, ask questions, and talk with your rheumatologist before starting anything new.
“Learn to check the sources of information so snake oil salesmen don’t try to prey on you.” — Laure
Social media can be a great place to share your story or just learn from others. Take your time poking through the different platforms, make friends, and don’t be afraid to be generous with your healing vibes for others. We all need a little encouragement, whether in person or virtually.
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Cathy Kramer shares her positive voice as an advocate in the rheumatoid arthritis, chronic illness, and self-care communities. Her ongoing journey with RA can be found on her blog The Life and Adventures of Cateepoo. She often hangs out @cateepoo88 on Twitter, Instagram, and Facebook. Watch her story on HealthCentral.