When In Doubt Just Shut Your Mouth!

When In Doubt Just Shut Your Mouth

My mother totally despises the title of this post because she is considered "ole school" and dislikes telling anyone to shut your mouth. Well, at least some years ago, but now that she is older she is more likely to tell someone to shut their mouth but states that I am still too young to say this outright. But...I feel that this is a must.  If you know someone who has multiple sclerosis, here are just some helpful things to not say to someone who at any given day is either living with or suffering from MS.

• "Oh my goodness, you have gotten so big since I last saw you!" Again, I can't understand the rudeness of the nation today but everything that comes into your head ought not be said.  There are many side effects of the medications that we having MS take in order to survive and keep a decent standard of living. At any given time a person with MS could be on steroids in order to combat a flare-up or a relapse.  We are surviving, just keep this comment to yourself.
• "There is a person I know that has MS and they are still working, what's wrong with you?" For as many cases of diagnosed MS that's the varying ways that the disease affects each and every individual.  Yes, for some years after my diagnosis I did work, but each year and with each relapse it was clear that in my line of work, continuing working was not in the cards. Do I feel guilty about not being able to work? Ofcourse. But on the days when I have problems seeing, walking and problems with balance, the choice is clear. You do not know nor understand a person's circumstance. And for you to inquire or question why a person is not ABLE to work is just rude.
•  "I knew a person who had MS and they died. You do know that that is fatal?" There are many things that could take your life, a sudden onset of an illness or a freak accident. But to remind a person who has MS that it could be fatal is rude and very obtuse in thinking.  I understand and I am sure that others with MS have understood this notion and have come to grips with this.  But, just because I have MS does not mean that I am dying from MS today. But for you to remind me of this usually on the day where I feel like crap, let me be the first to say, 'Just shut your mouth!'
• "You look like the picture of health!" Though I am very happy to hear these words, let me reiterate that I am not healthy. MS is called the 'invisible disease' for a reason.  I feel like I need to carry around my MRI's, my symptom checklist and my litany of scripts that I take daily to combat each and every MS symptom. And though this may sound like a compliment it just brings to my mind that on any given day I feel like crap. But, thanks anyway.
• "I heard that MS is hereditary. You must be so worried about your children!" News flash, there really isn't enough substantiated evidence to support that there is a hereditary link with MS.  Although MS has been seen in more than one family member, there is more likely an environmental link or the case where both family members have had a similar illness i.e. mononucleosis. And yes, do I still worry about my children developing MS. Yes I do, but I also do not need your two cents in the matter either. So again, shut your mouth.
•  "You don't really need that cane do you!?" Even though I do have a cane that matches each and every outfit, (yes, I am still vain), this does not in fact mean that I am simply trying to accessorized. My. Cane. Is. Needed.  Though you may not think 'I need' my cane, I in fact, do. I need my cane to balance, to aid with my sluggish slightly dragging left leg and foot, and to be able to walk pretty much any distance. Again...keep it moving.
• "You sleep a lot, how in the world can you be tired all the time?" Yes, I sleep, when MS allows me to sleep.  Each an every night I take medication prescribed to be to aid in MS insomnia. You do know that in the brain where I have lesions causes impairment of each and everything that I do and cannot do, i.e. sleep. And MS fatigue is just bad.

"I know exactly how you are feeling. Once when I had whatever, whatever....." I am not trying to negate how you are feeling or how you have felt but PLEASE I really do not want to hear that you feel EXACTLY the way that I feel because, you do not. Do you know that there are days, nights when I am in pain, in tears and can barely move due to fatigue but life has to continue. No!?! Again, shut your mouth.

I could on on for days and days about the ill spoken comments, questions and remarks.  A word to the wise, if you meet someone who has MS and you have a question, think first and if you are in doubt...just shut your mouth. This has been a public service announcement.