Awareness and education
I've been frustrated since day one about how slippery MS is to define, to explain, to describe. Ever since I started with a "possible" diagnosis some eight years ago, I've been trying to come up with a short, succinct explanation for my friends, my family, for the woman behind me in the grocery checkout. There just ain't one. You can't do it in two sentences.
Yes, to someone who just wants the basic definition, you can say "It's (thought to be) an autoimmune disease which affects the central nervous system." If the person says, "Oh, okay, thanks", then you're good. But if the person wants to know more?
Early on, I had the bright idea of writing up a simple one-page info sheet to give people who really, really wanted to know the deal. The list of POSSIBLE symptoms took up nearly the whole sheet.
Then I had to add a whole list of disclaimers: Not everybody has every symptom. Some people have only one or two symptoms, some have lots of them. Some have mild symptoms. Some have some symptoms that are mild, and other symptoms that are severe...
...Some have symptoms that come and go. Some people have a symptom that's mild one day and severe the next. Some people get really bad really fast. Some people take years to get really bad. Some people never get really bad. Yep, some people die...
...Some people work full time, raise a family, ride bikes, go to ball games. Some people get exhausted taking a shower and fixing lunch...and many go back and forth between the two, and everything in between...
...Is it treatable, you ask? Yes. Sort of. Some take drugs, some don't. The drugs help some people, others not so much.
It's easy to get frustrated, even with the awareness effort itself! In the last few months, I heard three different MSrs interviewed on TV. As one spoke, I thought, "Don't say that! You make it sound like it's no big deal! It's a very big deal!" When the second one spoke, I thought, "There! Yay, you've nailed it!" And the third one, I thought, "Don't say that! You make it sound like we're all gonna be in wheelchairs in six months then die!"
All three were right, of course, because we each have our own story. Don't get me wrong, I'm all for getting the word out, the basic information, letting the public know we're out here and we (and the next generation) need a cure. I just keep wondering, is there another disease whose course is trickier to describe and predict than this one? Good grief!
Even in our little community here on NeuroTalk, we're all in the same boat--but like snowflakes, no two are exactly alike.
**My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26)