Multiple Sclerosis Foundation - Social Media and MS: Pros and Cons

People can receive their news, articles, and other information from a variety of different sources and formats these days. Some people still prefer tangible items like magazines, books, or newspapers while others prefer to hop onto the faster moving, ever-changing message train called technology – particularly when it involves social media. Actually, I like to use them all, so I’m somewhat of a “tangible techie”

I’ve been in a social media time-out the last couple weeks. In all honesty, I take these breaks as often as possible. I feel it’s quite healthy to do so, necessary even, for us to make it a habit to unplug from our devices from time to time. Just as a computer needs the occasional maintenance, back up, and reboot, the same applies to us. Our mind, body, and soul need to unplug and take a break from the various online platforms that seem to inundate our world these days.

Don’t get me wrong, social media and the accessibility of information found on the Internet can be fantastic for contacts, resources, and powerful tools! These resources are especially helpful for those living with MS, chronic illnesses, and disability. It’s also important to think about those who live in rural areas where the internet is often the only lifeline they have to the outside world in general. There are wonderful resources available for people to connect in person, at conferences or with others in a virtual setting. I’m really looking forward to seeing more of the virtual meetings come into fruition! Just take the time to explore the various organizations and groups relatable to your comfort level and other needs. Explore something new – peruse the plethora of ideas, possibilities and unknown opportunities available at your fingertips! This can be life changing for many of us who are no longer able to work, yet have so much talent to offer.

On the other hand, social media can also a powerful tool for the wrong-doers who fear-monger, solicit unfounded “cures,” and engage in other types of misbehavior. Social media ads, people, pages, and groups are plentiful online. Sadly, those of us with chronic illness and the elderly are the targeted communities to inundate such misguided misinformation and malice. The intent of many of such sources is to prey on the vulnerable by spreading fraud, scams, politically biased and unfounded, irresponsible medical news.

As a long term admin and member of other online groups, here are some key tips I’ve found to be helpful and important for using social media responsibly and carefully. These tips are not just important for yourself, but also for others with whom you may choose to interact or share content. no matter if you choose to participate as an individual or as a creator or administrator of something larger, my number one rule is to be responsible – always be thoughtful and considerate of others no matter if they may be in the beginning stages of an MS diagnosis or are a “veteran” of the disease.

Helpful hints and do’s and don’t’s:

Always ask for help – you’ll be surprised by how accommodating people are to get you the help need or at least point you in the right direction
Research online groups/platforms and “follow” the most reputable, active people in your communities or areas of interest
Reach out and interact with others for a most enjoyable experience
Research the communities that best fit your needs
Read the rules and group descriptions in full before joining a group
If you choose to create and administer a group, define your rules and info (description) in order to clarify your target audience and precisely why your group exists
Keep in mind the specifics of your group – especially as it grows.
What is your desired size of a group(s). How many members? Will you benefit from recruiting multiple admins? Do you require a public, private, or secret group?
When joining other groups, please answer all security questions in order to provide administrators the comfort and validity of your persona (I realize it can be an annoyance, but it’s a safety measure all groups should abide by in order to avoid fake accounts, scams, etc. from disrupting your group)
Get to know your admins – reach out to them for questions or issues
Use extreme caution and be responsible when discussing therapies, medications, diet, supplements, etc.
Don’t discount others or compare your MS symptoms or other health issues with people. Remember, MS is not a “one size fits all”
Utilize/contact the nonprofit organizations though social media, publications and websites (i.e., MS Focus: the Multiple Sclerosis Foundation, NMSS, InforMS, MSAA, MSWorld, ShiftMS, iConquerMS, etc.)
Politics are a touchy area, yet I feel when healthcare, civil/disability rights, and the like are in the forefront, definitely open up discussion responsibly
Before sharing news and other links, research the source for validity. Is it a reputable site, debunked or outdated, etc. When unsure, ask someone who is well known in the MS community before sharing posts which may contain potentially irresponsible information
When researching/sharing information on your own, stick to the above mentioned organizations or refer to the most reputable medical resources with up to date medical news. Some examples of my “go to” searches are: The Mayo Clinic, Johns Hopkins, CDC, FDA, AMA, JAMA, etc.

On a personal note, social media has proven to be more than a life changing, positive experience for me since my own diagnosis in 2001. Although blood, sweat, tears, and many years forced me to learn the ropes by trial and error, I wouldn’t change a thing. I am forever grateful to my amazing community of online friends who’ve taught me so much over the years. I am thankful for their unwavering support and guidance – a trait of which I intend to emulate by paying it forward.