"I don't know ANYONE with MS." That's what I thought, soon after learning about my own diagnosis, almost nine years ago. Even as a doctor, I had only seen two or three patients over the years with MS, and our contact was brief. My diagnosis seemed so random, so rare.
A diagnosis with MS, like many other chronic diseases, can feel devastating – and very, very lonely. Yet one of the early surprises that I discovered soon after my diagnosis is that MS is COMMON. New estimates suggest that nearly one million people in the U.S. may have MS.
We, the MS Warriors, are out there!
Why do we seem scarce? Because signs and symptoms of MS are widely variable and often invisible. I have intermittent dizziness, leg numbness, and cloudy vision, but no one can tell. I try to ignore my symptoms; I still work and go grocery shopping and run and argue with my kids.
But connecting with others, finding my tribe of fellow Warriors, has been a gift, especially at the time of my diagnosis, and again over the last several months.
After I shared my news with others, soon after my diagnosis, suddenly I was surrounded by fellow MSers: a friend of a friend, the mother of one of my daughter's classmates, a colleague, a nurse at the hospital where my husband Don works, even one of the doctors who helped provide my early medical care. Their generosity, as they shared their stories and offered encouragement, lifted my spirits during one of the darkest times of my life.
The BP MS150 bike ride in April, the National MS Society's (NMSS) Texas Legislative Day last month, and the MuckFest MS in Dallas last weekend brought me back together with MS advocates, and even more importantly, with my fellow MS Warriors - that unique group who can rattle off names of the disease-modifying drugs for MS (Copaxone-Rebif-Gilenya-Tysabri-Ocrevus…), share stories of our initial diagnoses which often start with "I thought I had a brain tumor…," and offer inspiration and support from a place of profound understanding.
We are out there, and we are strong.
If you are facing a new diagnosis of MS – or any chronic disease – I urge you to reach out to others with your condition. For those with MS, the NMSS is a valuable resource, providing support services and learning sessions across the country. Those with other chronic diseases can usually find support through similar organizations (American Diabetes Association, Arthritis Foundation, Alzheimer's Association, etc.) On-line communities can provide support as well, as I've learned through writing for Quora and connections on Facebook and Twitter. I've also been inspired by fellow MS bloggers.
Connecting with others is a way to share the burden of a chronic illness – and also to share hope.