Saturday, September 24, 2011

Mood- so-so

Health- not so-so but simply so

Today's post is about a phrase that many with chronic illness often hear-

"You are so strong and upbeat... I don't know how you do it..."

While those saying it mean it as praise and as a positive thing it can actually be seen as a very frustrating thing because in all truth, what choice do we have?

We are 'strong' because we have zero choice in the matter and in truth what people see as being strong is in reality struggling to live and managing to make it one more day.  What is seen by others as strength is in reality us struggling for any little aspect of 'normal', of being just like everyone else.  

It does not take strength to go from Doctor to Doctor and Hospital to Hospital... to endure painful tests and procedures... to get out of bed in the morning...

What it takes is will to live and try to have a 'normal life'... it is not strength that drives us but knowing that if we want to have any life at all we have to fight for it.  The 'simple things' are not so simple for us and people see us struggle so they offer words of praise "you are so strong" but they never think about what real strength is.

Real strength is the person that knows they are weak and even when they give in and give up they still fight for that next breath.

Real strength is holding on to that last thread of hope no matter how hopeless a situation seems.

Real strength is rarely upbeat and chipper... that might be the mask worn when people are looking but in truth real strength is bone tired and aching, it is feeling helpless and worn down by life.  It is crying into your pillow when no one can hear you and staring at the ceiling or walls for long periods of time because you just do not have it in you to do anything or cannot think straight enough to remember what you were going to do in the first place.

As for being 'upbeat'... that is often for others benefit and not our own because pity is the last thing we want or need.

There comes a point in every chronic patient's life where it is hard not to cringe when they hear the words "I am so sorry you are going through that" or "I hope you get better".

First off... please do not feel pity for us or feel sorry for us... you did not cause it to happen to us so you have nothing to feel sorry for and your implied guilt makes us feel guilty that we made you feel that way.

Secondly, saying that you hope that we get better is almost like saying to someone that lost a leg "I hope it grows back".  An incurable condition is just that... incurable... there is no getting better from it.

I know... we know... that these things are only said with the best intentions and are not meant to hurt and I am not trying to lecture anyone for saying them... what I am trying to do is raise understanding so that those awkward moments can be avoided.

With this in mind I am going to post a list of things that can be said and asked (and please do ask, because one thing we want more than anything is understanding and awareness).

• Is there a cure?
• Are there treatments?
• Is it contagious? (this might sound like a strange question to ask, but it is in the back of everyone's mind and asking will open the door to learning more)
• I hope that it calms for you and you are feeling better soon. (this shows that you know that the person will not get completely well but you still hope that they will feel better)
• Where can I find out more about it? (yes yes yes, ask this!!!  we are always willing to share how to learn more)
• Are there many doctors that treat this? (you might be surprised by the answer)

When all else fails, a hug goes a long way because often people are afraid to touch us, afraid it will hurt or somehow they will be contaminated by the touch.

So... in the end just remember... we are 'strong' because we have to be and we are 'upbeat' because we try to hide the real face of that 'strength'.