Your MS Isn't My MS
It sounds like a variation of a school yard taunt or bragging – but my MS isn’t your MS. So often when we are in conversation on line with others and talking about our particular course of multiple sclerosis, it is only natural to compare where we are with this disease to how others are doing with their own MS.
And that is where we have to put the brakes on and bring the conversation train to a screeching halt. Your MS is never going to be like my MS, and that is part of what is so confounding and confusing about this disease for us, our family and friends, and even the doctors and researchers.
We hear over and over about the snowflakes – no two are ever alike and how MS is like those snowflakes and never the same way from person to person. As trite as it might sound, that is the absolute truth. Put 1,000 people with MS in the room together and the stories and symptoms from each person will be different as to how their MS acts out.
It’s no wonder our well-meaning friends who come to us with stories about other people they know who have multiple sclerosis, get that stare from us and the reply that our MS is nothing like that, whatever ‘that’ might be. We are all unique in our disease and it is what is so frustrating to us and to the researchers and doctors.
I started thinking about this again the other day when I read Stephanie Butler’s 50 Shades of MS Pain. I understand what she is talking about with the pain she experiences, but that’s not my MS. So far, knock on wood, I’ve not had significant MS pain, but I do know it is real because of the stories from people like Stephanie who are willing to talk about their particular case of MS. Or from seeing first-hand my aunt or my good friend experience excruciating pain from their MS.
Why do you think we have 12 disease modifying therapies available and many more in the labs just waiting for their turn through the clinical trials and approvals? Because those darn snowflakes, oops!! I mean the people with MS all are different and respond to different treatments in different ways.
So what do we do about this unique disease? We listen to each other. We empathize with what the other person is going through with their MS and hope they do the same with us. We take notes, just in case sometime in the future we experience something similar and can apply what we have learned from them to our own MS. But we also need to continue to struggle against the instinct to compare ourselves against others, and accept that we are different from the next person with multiple sclerosis.
Some people have the misfortune of having doctors who insist that MS comes in one size, one flavor, and anything that doesn’t fit into their preconceived ideas of multiple sclerosis can be dismissed. They must have skipped school the day they were teaching about the MS snowflakes and didn’t hear the lesson that no two are alike.
Those of us who have MS often try to find commonalities that unite us with each other. It’s a coping mechanism that gets us through, yet we need to remember that we should never compare symptoms and situations, as if we were on the schoolyard and jockeying for position. My MS is always going to be different than your MS. Not better. Not worse. Just different.
Wishing you well,
How many specialists did you see before finding "The One"?