Advice for Newly Diagnosed from Someone Who Cares
I’ve been living with Multiple Sclerosis for half of my life and sometimes I forget what it was like to be newly diagnosed. It’s not that I forget how I felt; it’s simply that 28 years is a long time ago.
And sometimes it feels like 5 minutes ago.
I remember how scared I felt before my diagnosis, and how unsure I was that all of the tests my doctors were prescribing would somehow tell them I had something very specific. Numbness? Fatigue? Weakness? What did those symptoms mean?
Would the doctors be able to put a name to what I had or, as some well-meaning but thoughtless people told me, would I have to endure a battery of tests for years until they found an answer?
Huh? What did I have? Is it curable? Couldn’t they just give me something to relieve my symptoms? How did I get it? Would it get worse? Was it contagious? Can I have children? Was I going to die?
I had so many questions, and in an era before the Internet the answers came slowly.
Today I tell newly diagnosed people that they are ironically diagnosed at a better time than I was. Unlike 1987 there are now FDA approved medications. There is something new called “the Internet” that is available to turn to for information. There are online MS groups and websites, and now doctors and nurses finally subscribe to the idea of complementary medicine instead of laughing their heads off at something that’s not proven scientifically.
But, like a parent giving their child advice, not everyone wants to hear how much better they have it now than when I was diagnosed. And I don’t blame them. Because when you’re first diagnosed you’re busy wishing you didn’t have MS at all, or you’re either in denial or are going through the beginning phase of trying to learn to live with a new normal.
When I talk to those who are newly diagnosed I hear the fear and anguish in their voice. It’s palpable in the questions they ask, and I think back to when I felt the same way. So I try to put myself in their shoes.
So here’s my new spiel:
Where do I begin? I still believe the best place to start to begin educating yourself about MS is the same place I started. The National Multiple Sclerosis Society. Their website provides information about the basics of Multiple Sclerosis, and you can also find local support groups or free classes in swimming, yoga or t’ai chi. The Society also maintains a list of doctors that specialize in MS in case you need to find one.
There are other reputable organizations as well such as MSAA (Multiple Sclerosis Association of America) and MSF (Multiple Sclerosis Foundation.)
And remember that MultipleSclerosis.net is a 24/7 reliable resource for information and a place to use your voice about anything MS.
What websites do I turn to? Here are my go-to websites (aside from MultipleSclerosis.net): The Mayo Clinic, Can Do MS, The Multiple Sclerosis International Federation, Science Daily (under Multiple Sclerosis Research) and DrWeil.com.
What do I do next? First I want every newly diagnosed person to know they are never alone. When I was diagnosed I felt alone despite my loving family and friends. I wanted to speak to others with MS. Today the Internet can provide you with ways of finding the support you need.
Take a look at what’s available throughout social media or check out some blogs written by people who have MS. Attend a local support group. Call MS Friends, a 24/7 hotline manned by trained volunteers with MS (you can find information about them on The National Multiple Sclerosis Society website.)
You can always post your questions for MultipleSclerosis.net either on our website or on our Facebook page. A moderator will get back to you.
What if I feel anxious and overwhelmed? Discuss your feelings with loved ones. Or if these feelings continue speak to your doctor. Remember to be frank about how you feel physically, emotionally and spiritually. Write down your feelings in a journal and bring your list with you to your appointment.
If your feelings last awhile seek the help of a qualified therapist. There is no shame in reaching out for help. The bottom line is your wellness. Nothing is more important than that.