I just saw this picture on a dedicated MS Facebook page. It says “YOU WILL NEVER KNOW WHAT PAIN IS UNLESS YOU HAVE MS!!!”
Well excusez-moi please, but that is just absolutely ridiculous, both as a statement as an idea!! Life is NOT A CONTEST of who has more pain than the other, it’s not a game of showing people how sick we can be. So forgive me for sticking up for other people without MS because statements like this only give people the wrong idea of what having MS is really like.
My reply to the wall post may be a bit harsh but we as MSers need to make one thing clear…. we are not the only ones fighting illnesses: “I am all for raising awareness on what MS is and what it does to you, but I definitely wouldn’t go as far as saying that only people with MS know what real pain is. I’m a chronic pain patient myself but pain is relative… what is really painful to you might only be a bit of an annoying thing to me, and vice versa.”
“Sure, I wake up 3 or 4 times per night of pain but there are others who are suffering far more than I am, or than other MSers do. Reality check here so, MSers are not the only ones who know what real pain is. This picture is a desperate statement, almost like wallowing in pain when we all need our energy to be positive instead of negative and try to live normal lives… Statements like this only make non-MSers believe that we indeed are wallowing in our pain. I may have MS but MS does not have me, the famous statement goes :D””
If you’ve been reading my blog before, you will know that I say things openly – not bluntly but just in a “it is what it is” matter of fact kind of way. If you’ve read my post titled “Life begins at the end of your comfort zone“ you will also know my ideas about words like “MS survivors” (it actually makes my skin crawl left, right and centre… the word ‘survivor’ is making me feel sick in my stomach!), calling MS a “MonSter“ (who comes up with these words anyway?!) or “sufferers.” My vocabulary will never amount to this kind of speech because what you think, you become (thank you dear Buddha for the kind words).
Just to reiterate a bit of the blog post, here we go: “The other thing that really gets up my back is that some people call MS “the monster.” Or they keep on saying they’re “survivors” or “sufferers.” Not me because it shows what they think and feel of their illness, their situation and their life. I refuse to use the words monster, survivors or sufferers/suffering. I never talk about MS being my monster because it’s not. It doesn’t have blood-red eyes, it’s not one big, hairy spider coming after me in the dark. I also refuse to use the word survivor in connection with having MS. Survivors of what? You survive cancer. You survive a car accident. That’s what a survivor is. MS doesn’t kill people directly”
“You might get run over by a car because you couldn’t cross the street fast enough, or you might choke on a piece of meat because you couldn’t swallow quickly enough. So I am not a survivor of anything. My lesions will not kill me directly, and they never will. Nor am I a ‘sufferer’ or am I ‘suffering.’ Suffering as a word is so, so negative and I don’t use negative words or connotations in my language that would suggest I am in hell and I that can’t get out. My nerve pains can be really bad, horrible, awful, mad and crazy sometimes but I’m good in hiding it. People who know me, know that I never use the word “suffer”. Positivity is quite important because it’s helping me through the day with a giggle.“
The Facebook page the photo was posted on is a page that wants to raise awareness about multiple sclerosis. I’m afraid that ‘raising awareness’ with such an ignorant quote is not raising awareness at all, it only shows other people without MS that MSers are people without a backbone, without a willingness to see beyond our own illness and that MSers are just people who like to moan and groan. Some of us really are in a whole lot of pain and I am definitely not denying that at all, but we need to have a reality check on how bad things can get. People with MS do have aches and pains daily, I myself have felt like smacking my head against the wall of mad eye pains and headaches, so I do know how painful MS is.
We want awareness, not pity. Not sorrow, but understanding. And not negativity, but a bright outlook on life, no matter how painful our days are.
Phew… this venting did me loads of good. Feel free to comment with your idea about this quote!© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.