MS and Staying Social: Utilizing Online Resources

Cathy Health Guide
  •             “We’re all social creatures.” -Social Media Monthly Magazine


    In order to say what I want to say here, I first need to go back in time….


    When I was first diagnosed with Multiple Sclerosis in 1987, the world of MS was a much different place.  After learning of my diagnosis, I thought, “What will I do now?”  I was strung out on steroids and always alarmingly famished.  My heart was constantly palpitating.  I couldn’t sleep, yet I was overwhelmingly tired all the same time.  I now had a chronic illness that I knew nothing about. I felt horrible, and didn’t know who to talk to about how I felt.  My doctor had told me to go home and rest until the next flare-up happened.  I felt lonely, isolated, discouraged and disconnected from the world.  It was horrible and surreal.  I went home, lay down on my bed, took out a book and started reading as if nothing happened.  It was the beginning of my MS journey.

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    Then someone told me to call The National Multiple Sclerosis Society and request information about MS and being newly diagnosed.  When I finally called, the person at the other end of the phone was cheerful, upbeat and kind.  She helped me understand what the Society’s mission was, and went to great lengths to assure me that whatever questions I had, they were always there to help.  She also suggested I join a local support group so I could interact with others like myself – a way of socializing while learning about the disease I now had.  She gave me the name and telephone number of my local support group leader and wished me luck.  When I called the group leader, she told me she would no longer be conducting the group, and asked whether I’d be interested.  I said I’d love to.  And so my journey took a first step.


    I led this group for a few months, bringing local speakers to talk to us about MS – ophthalmologists, neurologists, chiropractors – they were all well received.  It was through these doctors that I heard about a wonderful MS Center that provided care for the whole person – neurologists, nurses, psychologists, therapists – a place to help you - as well as your family’s - MS needs.  I jumped at the chance to be part of such a place.  I am glad I did.


    The MS Center not only provided a place for my physical needs but also my emotional ones.  Being a nonprofit I decided to get involved with their fundraisers, which included a group of young professionals.  I met many wonderful people during this time – people who have forever touched my life and to whom I am forever grateful.  But, as we know, life always changes, and it did.


    After getting married and having a child I moved to the suburbs and became, by choice, a stay-at-home mom.  I loved every minute of it.  But, as your child grows and requires less and less of your time, you begin to feel a bit lonely and isolated (at least I did).  By that point my MS had worsened and I experienced daily overwhelming fatigue.  I was unable to work a full-time job while caring for my family and myself.


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    Now I ready for the point of this story…


    When the Internet finally became more user-friendly, it astonished me at the ease of becoming connected to people around the globe at the touch of a button.  Readers who are younger than me may not appreciate the enormity of the advent of the World Wide Web because they’ve grown up with it, but believe me when I say the impact of the web was tremendous.   New health websites were sprouting up all over.  People had to learn and re-learn how to find what they were looking for; the amount of helpful and informative websites for people with MS was astounding. 


    The computer became my link to the outside world.  In between carpooling and being a class parent I could go to my computer, click on a chat group or forum provided by many health-related websites, and be connected to people with MS around the world.  We commiserated with one another about our health, our children, the desire to find work or something as simple as what we were having for dinner!  It gave me a feeling of relief knowing there were others out there that I could “chat” with about everyday living.


    Today, with social media such as Facebook, Twitter and LinkedIn, programs such as Skype or iChat, or blogs such as Brass and Ivory or (shameless promotion about to happen…) An Empowered Spirit, people no longer need to feel shut in.  They can reach out in hundreds – or thousands - of ways to others, and never feel alone.  We can belong to many groups, both public and private, and talk to one another as if we were sitting across the table sharing a cup of coffee.


    The National Multiple Sclerosis Society now offers their own social media site called MS Connection.  Check it out!  Their slogan is “MS Kills Connection >  < Connection Kills MS.


    Of course, HealthCentral provides their own informative videos on the YouTube Channel.  Please take a moment to see what they offer.


    How do you stay in touch with others?  What ways do you stay connected?  I’d love to hear from you, and learn from you!


                “Alone we can do so little; together we can do so much.” ~Helen Keller


    Cathy Chester is the author of the blog An Empowered Spirit.

Published On: June 08, 2012