Each year I am increasingly thankful for fabulous friends from around the world. Many of these friends just happen to live with multiple sclerosis (MS) and/or rheumatoid arthritis (RA).
Being diagnosed with a serious, chronic, and disabling condition is life-changing. It causes you to wonder “who am I now?”
Before my diagnosis if someone asked me, “so what do you do?” my response was simple. “I am a freelance musician in the D.C. area. I play in a number of local orchestras and teach private lessons in my home studio.” The answer now is a bit more complicated.
Two years after I was diagnosed with MS, I started a little blog. My primary focus at the time was talking about health policy, insurance, and pharmaceutical products. Not long after creating my blog, I discovered other people living with MS who were sharing their stories and offering support to each other. This was a tight knit community we called the MS blogosphere. Having a chance to interact with such a dedicated group of individuals was inspirational and led me to create the Carnival of MS Bloggers.
I remember when several of us MS bloggers had a chance to meet in person for the first time. Meeting face to face and getting to know one another was a transformative experience; since that initial gathering we’ve become longtime friends, continuing to meet whenever we can and frequently communicating and supporting each other online.
During the past seven years, I have been fortunate to travel throughout the country to advocate for MS patients. I’ve participated on panels and spoken at conferences. I’ve even traveled to Switzerland twice to represent the interests of MS patients.
Now, I am more than a musician. I am a patient advocate, writer, speaker, consultant, educator, and champion. I also am just trying to live the best life I can with these unpredictable diseases.
My friends have always been there to answer my questions whenever I needed help; and in turn, I theirs. They’ve offered words of compassion and support when I’ve faced serious challenges. Most importantly, they’ve made sure that I clearly understand that I AM NOT ALONE.
I am sincerely thankful to have the support of close friends who know what it’s like to live with this disease. I am thankful for the community that reaches out to support each other; it’s a beautiful experience. I am honored to be part of your journey as you face this disease. You are part of my own MS experience, and I will forever be changed.
Like lyrics from the fabulous Broadway show “Wicked” says of friendships:
I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
I have been changed for good by all of you. Thank you for being part of my MS journey. I would not be the same without you.
How can YOU find other people with MS?
There’s nothing quite like being in a room with other people who share your experiences. The National MS Society and the Multiple Sclerosis Foundation sponsor extensive support group networks that you can join. If you live outside of the United States, contact your MS society to inquire about available resources.
The MS blogosphere has exploded in magnitude since I first started blogging. To make it easier to find active blogs, I created this page where you can access the most recent posts from around the MS blogosphere. If you have a non-commercial MS blog and want to be included, please contact me.
The wider online MS community also has grown. You may enjoy participating in an MS-specific social network/forum, such as Shift.MS, MyMSTeam, MS Connection, MS World, or PatientsLikeMe, or one of many moderated Facebook groups, such as MS Focus or MS Trust (UK). If you are a social media fan, you can find other people with MS on your chosen platform (Twitter, Facebook, Instagram etc.) by searching popular hashtags such as #ChatMS, #MultipleSclerosis, #MS, #EndMS, #StrongerThanMS, #MSWarrior, #MSActivist, #MSMonday, #MSAwareness, #MSResearch, or #WorldMSDay.
Of course, you are invited to connect with us here at Healthcentral.com, on Facebook @MSHealthCentral, and on Twitter @MSHealthCentral. We thank you for being part of our MS community and we are glad you’re here!
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.