MS Etiquette

I have been diagnosed with MS since September 2003.  I feel like I am fighting the good fight everyday, and then there are some days when the MS is beating me.  After my diagnosis, I continued to work, take care of home and family and then some.  Even now, years after my diagnosis I still hear some of the most annoying, rude and downright selfish comments....EVER!  So, please let me give you  a few things as not to say to a person who has MS.  

•  "I know someone that has MS, and they're in a nursing home."
• This is probably right at the top of what you can say to someone who has MS.  We know what trail this disease can take us.  We choose to look at the positive, not your little dig you just threw at us.  Give it a rest.
• "Is is hereditary?"
•  Now, this comment just grates on my nerves.  You hear your loved one has MS and the first thing you think about is yourself? Wow, how very narcissistic of you.  By the way, I am fine and the last time I checked you couldn't inherit my chronic illness.
•  " I know someone who has MS and they are still working.  Why aren't you working anymore?"
•  If I heard this once, I have heard it a thousand times.  I follow strictly what my doctor deems necessary for my case.  I'm really not interested in who you know and what all they can do.  MS is not only different on a daily basis, but affects people differently.
• "But, you don't look sick.  You look like the picture of health."
•   My father always told me, no matter how bad you feel, you get up, shower up, get dressed and put on your best face.  He said looking good is half the battle to feeling good.  I don't know how I am supposed to look.  Maybe haggard, crying all the time, rundown, but believe me I have those moments in the privacy of my own home.  I try to look my best everyday.  And, yes Daddy, that's half the battle.  Maybe I will get a custom made shirt with my MRI scans on it so they can see what's going on, or rather what's not going on right in my head.  Maybe I won't hear this.  It's a thought.
• This person I know has MS and she/he seems to be doing much better than you!"
• Yet again, just be quiet!!! MS is different for everyone.  MS does not affect people the same way.  People do not progress at the same rate.   My name is Carla, not the person you know who has MS, so please, just quit it.

• So, when are you going to die?
• Umm, last time I checked the odds of me living a fulfilling life are pretty darn good.  Yes, some have succumbed to symptoms of multiple sclerosis or the complications there of.  But many of us go on to live a long, hopefully fruitful life. 

•  So how does it feel to be a burden to your family?
• Really, did you really just say that?  We the people, who have multiple sclerosis do not think, nor do we ever want to be a burden on others, especially our family.  I know, I tend to go out of my way not to ask for help and or assistance.  Most of the time it is thrusted upon me.  Though we have a disabling chronic illness, we still do not and will never consider ourselves a burden on anybody.  Please stop calling us a burden.  We are humans with an illness, nothing more, nothing less.  

• Multiple Sclerosis, is that contagious?
• Wow, it is just so frustrating that there is still no common knowledge regarding multiple sclerosis.  The cause of MS is unknown, but there are studies that state that people having had mononucleosis in their earlier lives are four times more likely to be diagnosed with MS in later life.  Well, I had mononucleosis twice, so I was twice as likely to develop MS.  Lucky me.  But, sometimes I feel like when the person ask me that, I want to sneeze or cough on them and say, "Oh yeah, it is contagious, especially when I sneeze or cough!"  But I am patient and explain that, NO, MS is NOT contagious.  Moving on.

Please remember that we are dealing with a very serious and chronic illness.  If you have questions, we will gladly  ask them, but, try to think before you speak.

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