Alone in a Room Full of People
No one could possibly understand this. This disease is so elusive, yet so real to me.
Everybody with this disease seems to have a different set of symptoms, different age of onset or different way of coping. Fifteen years ago, I felt completely alone. No one I knew had MS, and I certainly wasn’t sure how to explain my illness or its symptoms I was dealing with.
At first, people would tell me, “it’s all in your head.” I’d feel hurt and would mutter under my breath, “well, yes! I have multiple sclerosis, it is all in my head!”
As confusing as this disease is, I am truly blessed to not be facing this alone. Since I was diagnosed, four co-workers have had MS touch their lives very personally. A friend at church was diagnosed a month after I was, and yet another very close friend three years after me. We all have MS but have completely different symptoms. I guess because I am a nurse, I more readily share my health issues; I wear my heart on my sleeve, and my basic instinct is to help others.
MS affects my vision. In struggling with this, I am alone. No one can feel the way my eyes get tired and unfocused… but I have adjusted. I rest when I can. I cry sometimes, yet I know I can rely on my MS friends.
With these folks, the “M’ and the “S” do not necessarily stand for multiple sclerosis. No, I believe they stand for much support. These “MS” friends are there when I need them, or when they need me. If we ask each other, “how are you feeling?” it’s a deeper question when you have this disease. They all understand when I say, “the fatigue monster has come calling today!” They know very personally what that means. Tired is tired, but MS tired? Now that’s something else.
We “MS” people keep at it. We all keep going. We are truly not alone. We understand that this is not a club that most people want to join, but that we did not have a choice. We can, however, choose our attitude toward this. We offer much support to each other and for each other. You, whose eyes are reading these words, are not alone either. Much Support can and will come your way in this blog room full of MS people!
Breaking the cycle of exclusion: Embracing cultural competence in physical activity research for people with MS
Cultural competence in research involves considering the culture and diversity of a population.
An MS diagnosis in college didn’t stop Téa from cheering for the NFL.