Sometimes friends and family don’t know how to best support someone living with MS. Donna shares some tips for explaining your Multiple Sclerosis to others.read more
When I began looking for a diagnosis for my multiple sclerosis no one would consider MS for one really significant reason – my sister had it. Not only did she have it, but my first cousin had it as well. Back then it was believed that my having it would be like lightening striking the same place three times. Nearly impossible.
That was only five years ago. Now, if you simply use a search engine and research MS, many of the articles you read will say that there is a “genetic link.” I wasn’t crazy! For once! We weren’t struck by lightning three times either!
So sisters with MS. What do we do now? Do we have MS, girls’ night out?
Having a sibling with MS can be tricky. Sometimes I compare it to jeans. It’s like my sis and I are children and are fighting over who gets the jeans, and we are wrestling and sometimes I win and I try to wiggle in, only they don’t fit. I try to fit in so my parents will recognise me, but I can’t. They simply don’t fit. They aren’t mine. People expect the same MS from us even though we are so incredibly different when it comes to our MS and how it presents.
My family expected my MS to look like hers, and it didn’t. We were polar opposites on the MS spectrum. My sister’s lesions (most) were in her brain. Most of mine were in my spinal column. She’s never had a problem walking, whereas that was my first symptom. From avid marathon runner, to faller because of lesions on my spinal column. I’m not blaming anyone either. Even I was expecting mine to look like hers. I was not prepared for the wheelchair discussion. The contemplation of paraplegia while I nursed my newborn was just crushing. I never thought about such things because it wasn’t how my sister’s MS looked.
But there are pros as well. When I had to have certain treatments done, I was afraid, but I had my sister who showed up and reassured me it was “no big deal”. I ONLY believed her because she had been through it. No one else could fill her shoes. She helped my husband as well. He was as scared and baffled as I was and found such reassurance in her presence. We eventually calmed down because we had watched my sister endure her MS for years! She was a survivor, a thriver, and she adapted. There was hope!
Even after we found out how my spinal cord was affected, we still continued to find hope in how she navigated her world with MS despite the differences, and by watching others do the same thing. My sister could understand certain symptoms, or certain treatments or testing and how that would unfold. She also understood work complications and discrimination. But after that, I was on my own. I had to figure out so many things about myself and my new reality. I had to grow up, after I thought I already was.
I faced that darkness alone at night. I had to live through this to really get what my favorite quote by George C. Scott meant, “The human spirit is greater than anything that can happen to it.”
If you can look your MS in the eye, and say, “There is nothing you can take from me that can touch my spirit and who I am!” then you are free. My sister couldn’t live that for me. I get that now. It’s such a powerful place to arrive. It’s not like being hit by lightning, but rather like catching lightning in a bottle. I feel free.