Hey Everyone! I really liked how this was written by Jody as it helps bring to light some of the invisibility many of us with CFS or severe MCS have faced. As our lives spin crazily out of control, more often than not those we know will turn away from us, societies support systems for life tragedies refuse to help, and we are left with nothing but ourselves.
If you have a fire and lose everything you own, there is help to find you housing and even refurnish your life. Should you be caught in a natural disaster, there will be some form of help even if it is inadequate – at least someone sees your plight and acknowledges its validity. One day a blood test shows you have some well funded and researched disease, you would be allowed the right to be ill.
But as I have seen far too much since becoming ill, if you lose everything you have to some strange illness there is nobody there to help you rebuild. Even the agencies designed to provide some temporary medical or food aid will often question your integrity and seek to further destroy your life with a vehemence that is mind-bogglingly unfathomable in its desire to rip your being to shreds.
Please read Jody’s eloquent words that describe the shadows many of us become.
The Incredible Power of Ignore
by Jody Smith
I think most people have had times in their lives when they have felt just the teensiest bit invisible. The shy kid in the schoolyard. The geek in highschool. It is a universal experience. Most of us eventually get over it. Then there are those with the misfortune of becoming chronically ill.
This invisibility will ratchet up to the extreme for people with a chronic illness. Especially if they have what is termed a chronic “invisible” illness. The kind the onlooker can’t see. The kind that causes other people to speculate that maybe there isn’t really anything wrong with the individual in question.
And they become an individual in question. Perhaps they aren’t really sick. Perhaps they’re looking for attention. Perhaps they are lazy and trying to avoid responsibility. Or perhaps they are just weak and can’t cut it in the workaday world with everyone else.
Sometimes this can lead to unsettling situations where the chronically ill are accused of malingering, of pretending, of lying about a nonexistent condition. They may be told by people who don’t know any better that they need psychological help. That they need to shape up and fly right. If they’d get up and get moving they’d be fine.
This can be pretty hard to take for someone who is ill and fragile to start with. But at least it is out in the open.
What can be harder to take long-term (and a chronic illness is long-term) is having their plight ignored. This is a far more common situation than you might suppose. And it drains a little more life and integrity out of the chronic one every time they run into this brick wall. Or perhaps more accurately, this glass wall.
Because the casual observer can’t see any problem. But the chronic is all too aware that something insidious is very definitely going on. They are being negated. Their desperate state is being ignored. When this happens everywhere the chronic looks, the effects are devastating.
Ever notice that the term “invalid” is the opposite of “valid”?
Imagine yourself for a moment in the shoes of the person who has become ill and whose life has been radically changed. You no longer are able to live the life you once knew. You may be unable to work. Unable to go out and socialize. Unable to pursue the hobbies and interests you love. And to top all of this off, the people around you act as if nothing has happened to you.
Imagine your house is on fire. You run to this one and that one yelling for help, and instead of offering the normal response of concern and assistance, people … turn away. Turn their backs and walk away. Your loss is of no consequence. You have lost currency with the outside world.
Or imagine that you are drowning. Sputtering and thrashing desperately in the water, trying to call for help, trying in vain to get the attention of the people at the water’s edge. And they … continue to talk about the ball game. Continue to discuss their vacation plans. While you go under …
The incredible power of Ignore in action. Or, inaction.
This is all too often the experience of the chronically ill.
This was originally posted on Ncubator.