Many of the people who contact me are individuals who are “newly-diagnosed.” One such email that really struck a chord with me was from a 22 year-old mother who had a 1-year-old son. She wrote to me for support after being diagnosed with multiple sclerosis (MS). She had been in and out of the hospital during the past year with MS exacerbations. Life as she knew it was no more. Working full time, being a mother and wife was a challenge and she worried about the future. She wrote to me thinking that I might provide some words of encouragement and validate her feelings.
Her email triggered memories of what it was like when I was first diagnosed with MS 35 years ago. I don’t think one ever forgets watershed events like a life-altering diagnosis. (Regular readers of my column may know that I was diagnosed with MS when I was 32. At the time, my husband and I had two children, ages 5 and 3. I was also working and attending graduate school. Life was busy and I didn’t need more stress in my life. )
Although much has changed since my diagnosis, I tried to provide some guidance to this young mother for moving forward. Below is a portion of what I wrote to her:
New medications to treat MS, NOT cure it, are now available for people who are newly-diagnosed. They alter the trajectory of the disease and reduce exacerbations and disability. If you have not already done so, I encourage you to discuss taking one of these drugs with your neurologist. (Unfortunately, none of these drugs were available when I was diagnosed.)
Due to some of my symptoms, (severe fatigue and walking and balance issues), my friends grew to accept that I couldn’t “keep up” with them. One early example: not taking my turn driving carpool because my energy and stamina varied greatly from day to day. My family, friends, coworkers, neighbors and I had to find ways to work around my new reality.
Always an ongoing issue was having to give up some of my independence and feeling, at times, like I was a burden. I didn’t want to be a wet blanket thrown over everyone else’s fun. I tried to focus on the good things in my life like being surrounded by loving and caring people. And, when I came to terms with the idea that I could still be a valued, productive person — even if I wasn’t able to be SuperMom, SuperWife, and SuperCareerWoman—my life got better.
Just as MS affects each of us differently, we each have different hidden strengths and talents. I discovered my passion for writing several years after being diagnosed with MS, and it has opened up a completely new world to me that I never would have discovered had MS not entered my life.
As you acknowledge in your message, no one can tell us what the outcome of this illness will be, but I hope you are able to find the support you need. For research updates, local support groups, educational programs and fundraising opportunities, contact the National Multiple Sclerosis Society (www.NMSS.org), or the Multiple Sclerosis Society of America (www.MyMSAA.org), and additional community resources your doctors may suggest.
I hope this message is helpful to you and your family and friends. My best, heartfelt wishes go with you.