I polled approximately 50 people I know who have MS. This is “Awareness Week”. What would you want people to be aware of in regards to having MS. Here are some of their responses, their ‘wish list’:
• That even in "remission" I deal with a barrage of symptoms daily. "Even though I look so good".
• That it sucks!!
• That not only are there the obvious issues with physical problems, but there are also MANY unseen ones: cognitive, bladder, sexual, bowel, TN, etc. (another person added, “A ‘hidden agenda’ of MS symptoms”).
• Fatigue is one of the most devastating effects of MS. It is invisible and very difficult to describe.
• I'd really like all the well-meaning muggles out there to stop sending me newspaper clippings of How to Cure Myself by spritzing my sublingual regions with donkey urine, and stop feeling obliged to mention that Mr or Mrs so-and-so are doing really well on this, that or the other therapy.
• To get people to understand what it means to be "chronic and progressive". That you can't be cured; that you won't "get better", even if you have good days; and the best treatment only slows down the rate you get worse.
• That stress - physical or mental - can royally fuck with us.
• I think I'd like people to be aware that MS is a disease. So many of my acquaintances seem to think it's an illness like a cold, that it will go away. It won't. I'm as good as I'm gonna get.
• That we can seem fine one minute and then totally clusterfucked the next minute...
• I'd like people to understand how CRUSHING it is. It is crushing financially, emotionally, physically and mentally.
• I'd also like people to know, just because you know someone who is worse off, does not mean I am not suffering.
• I would like to see muggles learn more about mobility issues for folks with MS and others. Don't park in handicapped spaces because you're "only running in for a second." Don't try to cut someone off to get out the door before a person using a walker or a chair. You're reflexes are faster than mine, and I can't always stop before I run into you. Don't keep moving your car forward while I'm in a crosswalk. I can't go any faster, so get over yourself! And if you invite me to a party, please make sure I have a place to sit, preferably in a location that allows me to socialize.
Yes, we do indeed call people without MS muggles. Goofy, but what can I say? It’s better than some of the other possibilities. We belong to a club that nobody wants to join, we are entitled to some perks.
One of my friends pointed out yesterday that I am getting many responses from people who already are aware of MS and its devastation. But we really want this message to go to people who had no idea exactly what this MS thing was all about.
We don’t want to climb Mount freaking Everest. We just want to live with as much dignity and autonomy as possible. Just like YOU! So spread the word, PLEASE!! MS is a horrible illness, but it can be tolerable with your help and understanding. With your support for fundraising to find a cure. With your awareness.
My friend Barbie wrote a very pithy little poem that wraps this whole issue up. If nothing else, we People With MS, at least the ones I know, love to laugh:
I have MS, I am a mess.
The doctor tells me not to stress.
My feet are numb, my eyes are blurred
I struggle to find my next word
The meds I take are priced quite high
To keep the faith I try and try
My family cries, “Do this! Do that!”
“You need to rub on Emu fat,
and use stuff we saw on TV!”
“You should get disability!”
They all have answers for my plight
but nothing makes my shit work right
I’ve tried it all and nonetheless
I have MS. I am a mess.
Thanks to all my wonderful, witty, indomitable friends, all PWMS, for your contributions, your enthusiasm and your resilience!!!!