How People with Multiple Sclerosis Use Social Media

If you are reading this, you are using the Internet. If you leave a comment, “tweet” this, or post it to Facebook, you are using social media, which is defined as “websites and applications that enable users to create and share content or to participate in social networking.”

Many people with MS love to get engaged in social media and talk about their MS, as well as hear about the experiences of others. I’m at the 2015 conference of the European Committee for Research and Treatment in Multiple Sclerosis (ECTRIMS) and I was given the task to present a talk to neurologists entitled “How People with Multiple Sclerosis Use Social Media.” I’ll share with you what I told them.

First, I took a scientific approach, looking at what researchers had discovered about the “infodemiology” of people with MS. Infodemiology is a fairly new term that is defined as “a new research discipline and methodology to study the determinants and distribution of health information on the Internet with the ultimate goal to improve public health.” It was coined in 2003 when a Canadian researcher discovered that looking at Internet search patterns on symptoms of the flu was much better at predicting incidence of influenza than traditional disease surveillance approaches.

Different research groups have looked into what people with MS do on the Internet and in social media. To sum it up, they have found the following about us (people with MS):

  • We typically trust our neurologists much more than the Internet, but really like to check up on what we were told or prescribed by the neurologist (as the old Russian saying goes, “Trust, but verify.”)
  • We do a lot of searching for MS and symptom information in the time leading up to a neurologist appointment, the time when our diagnosis has not been finalized, and in the time immediately following our diagnosis. The Internet is often the first source of health information for us.
  • We are concerned and skeptical about the quality of the information we find.
  • We typically love to share and read stories about the experiences of others with MS, especially about what to expect from treatments or symptoms. We also focus on getting and sharing info about the daily management of MS, such as how to deal with specific symptoms or side effects of medications.

After writing about MS for over 8 years, I also offered my non-scientific observations as a person living with MS, as well as someone who has read countless comments on my blogs. I told the neurologists:

  • MS can be isolating  – it gives people hope to see that others are out there living with this disease. We feel less alone when someone else has the same really weird symptom that we have.
  • Social media gives us the chance to talk about things that are embarrassing or stressful – it relieves some of the horrible feelings and can even make us laugh about our latest cognitive dysfunction moment (I mistook deodorant for lip gloss) or incontinence incident, when we would never mention some of these things to even our closest friends.
  • We also love to talk about our neurologists, especially the bad encounters.

Bottom Line: What I was trying to convey in my talk was to calm the fears of neurologists about social media and the Internet and how people with MS use them. I think that some neuros picture us excitedly Googling “cure for multiple sclerosis” and simply trusting what we find by trying something that could be potentially harmful. While this has (and does) happen, most of us just want to understand this disease better and know that we are not alone.

We, people with MS, want to be listened to and communicated with. I made the strong recommendation that neurologists join the conversation, demonstrating their interest in what we have to say and giving them a chance to express themselves outside of the all-too-short office visits that are part of our lives. In turn, I promised that we would be nice to them in social media (at least most of the time).

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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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    5 Comments

  • Zsofia Brunaszki   Oct 7, 2015 2:15 PM
    Dear Julie,

    My Mom has been suffering from secunder progressive MS since more than 20 years. She is totally disable to use any electric gadgets that's why she doesn't use social media, though she is typical that of person who loves being with people.

    Thank you for your rows, it was nice to read and see her little smiling reactions when she recognised the same sympthoms and calamities.

    Kind regards from Hungary,
    Zsófia Brunászki
  • maria   Oct 7, 2015 2:16 PM
    Well Julie, I can't wait to see how many neurologists will venture into our inner sanctum, but of course, they could mask who they are. Do you think they heard you?
  • kathy   Oct 7, 2015 6:33 PM
    I spent the weekend as a caregiver last week with as MS patient who is bedbound and quadraplegic. About a month prior, she had been a hospice patient in accordance with her wishes. She has a legal DNR attached to the wall above her bed. She suffers sever chronic pain. The Hospice staff was doing what they were suppose to do, until one of her sons arrived and was under the impression that she had been over dosed with morphine. She was treated at the hospital. Her sons cancelled the Hospice, and are intent on keeping her alive and alert despite her chronic unremitting pain. She repeatedly expresses her desire to be treated by hospice but her sons are blocking this effort. She believes her DNR was violated when she was treated for morphine induced respiratory (near) failure. Her sons limit her pain meds to tramadol, one , every four hours. She expressed to me that she does not want to live in pain like this.
  • George Rector   Oct 8, 2015 9:35 AM
    In 10 years of doing peer support the two words I have heard most are "alone" and "overwhelmed." Social media like MS Connection open doors, open conversation. Yes, it would be wonderful to have our neurologists participate. My neurologist responds to my emails promptly and thoroughly.
  • Diane Hardin   Apr 17, 2018 8:08 PM
    From Diane My Son James Has Multiple sclerosis Since 2005 He Live In Madison Wisconsin He Been Living Up There For 11 years James Need No Caregiver Right Now. I Have Been On The MS Site For A Long Time There Are A Lot Of Wonderful Peoples On Here That Understand And Give You Support Also Listen And Care. Stay Bless Stay Strong Stay Positive It Work For Me And My Family And With God Help.