Sharing a Life Altered by Multiple Sclerosis
One of the most frustrating aspects of life with chronic illness is the constant state of flux. It is true of all types of multiple sclerosis, and relapsing/remitting MS certainly lives up to the name.
The fact that many of these on-again off-again symptoms are invisible to observers makes it a particularly difficult series of emotional adjustments, especially if you are prone to worry about what other people think.
It’s hard to be taken seriously when people see you looking the very picture of health one day and claiming to be the opposite the next. It probably doesn’t help their perceptions when we go to great lengths to hide the truth.
We hear a lot about maintaining a positive attitude in the face of adversity, and most of us work at keeping our complaints to a minimum and putting on our best face for all the world to see. Most of the time this works in our own favor, but occasionally the challenges of life with chronic illness loom so large as to become overwhelming.
Since receiving the diagnosis of relapsing/remitting MS in early 2004 I have, for the most part, managed to have more positive days than not. The not-so-positive days have been largely hidden from view, revealed only to a few friends and the closest of family members. Let’s face it, nobody wants to be considered a complainer.
I don’t want to be seen in a negative light, but as a positive person who lends kinship and support to others through my writing on the subject of MS and chronic illness. On the other hand, the bad days we all experience cannot be avoided. Addressing them openly and honestly doesn’t make me a negative person; it makes me human.
That was my thought process recently when I tentatively posted brief snippets about my latest MS relapse on Facebook and Twitter. Not complaints and not written in anger, they were instead brief and honest snapshots from a life altered by MS.
The response took me by surprise. Friends, acquaintances, and complete strangers sent me emails of support and understanding. Those who also live with MS or other chronic illness were, of course, able to see beyond the few words I’d written — I had struck a nerve. As far as I could tell, no one saw it as complaining or that I was passing on negativity. It was taken for nothing more than the truth that it was.
I have no less faith in the power of a positive outlook on life, but more faith in the people around me to accept the hard truth once in awhile. I’m not saying that anyone needs a play-by-play of our lives any more than we need one of theirs. What and how much of ourselves we choose to share is very much a matter of personal preference.
In a previous article on the topic of positive thinking, I wrote, “I wonder if, by keeping my bad moments private, I have contributed to the pressure to keep up appearances and if by putting my best face forward, I’ve given the impression that I’m always full of sunshine and roses… let it be known now… I have moments when no matter how hard I try, I cannot fight the frustration. So I acknowledge it, deal with it, and purge it. It’s not particularly pleasant, so I generally get myself back on track rather quickly. It is what it is.”
I would like to add something more to that statement: There is no need to keep these feelings to yourself. It is possible to share the bad as well as the good and to do it without wallowing or complaining. It is simply stating the facts of life. If they can’t handle it, that’s not your problem, but people just might surprise you.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.