Life - Dismantled

I recently read an interesting article on chronic pain.  It attempted to relay to people the differences between chronic pain and the pains experienced when growing older, or temporary pain.  I don't try very hard to explain to people what it means to be in the type of pain I experience.  Generally speaking I try to keep my mouth shut and act my way through it as if all is fine. But truth is, the pain varies from day to day and through-out the day.  From the inability to brush my teeth to being bed-ridden, it varies with the changing winds and weather. But one truth is, well, painfully clear:  it's always there.  And then there was this quote:

"...unless the pain is severe enough to completely dismantle the person's life, it is far from the same experience, physically and emotionally"

As I speak with my friends around the world who live with chronic pain, there is one particular idea we all agree on.  We don't want to tell people about our pain - we simply want others to stop telling us things that aren't true.  "It will get better" or "hang in there, things will turn around" is akin to telling a dying patient on their deathbed, "you've got a lot of life still in you" or "keep fighting, you're winning this battle".  It's an insult to the one receiving your words.

The people around us, the ones who care and love, are also experiencing a certain type of pain. It's the pain of being a witness.  Those very close to us see the day-to-day attacks on our bodies and our minds and are so frustrated knowing they are powerless.  Communicating through words is what we do yet finding those right words is not always easy.  All to often we choose the wrong words, thinking at first that they are offering encouragement and comfort.

So what are we to do, then?  Remain silent?  Go on as if nothing is happening?  Of course not. Both sides need to come to an understanding that our language is limiting us.  But we can take a few extra moments to come up with softer words and words that reflect truth and not false hope. We need to understand that for the life of someone living with chronic pain, their life has become completely dismantled.

Some things that people in chronic pain wish others to know:

1. Please understand that being sick doesn't mean I'm not still a human being.
2. Please understand the difference between "happy" and "healthy".
3. Having chronic pain means dealing with multiple issues, many of which are invisible to you.
4. Chronic pain is variable.
5. Understand that sometimes getting out and doing something does not make me feel better, and can often make me feel worse.
6. If I say I can't keep walking/riding/socializing...I mean it.  I'm not being mean, I'm just 'done'
7. If you want to suggest a cure to me, don't.  Remember that I'M the one who wants to get better and have spent countless hours researching and talking to this specialist and that one.  Chances are if you've heard of it, so have I.  If something out there works, we will know about it.  Thanks to social media, those of us in chronic pain are very well connected
8. If I seem a little touchy or moody - it's because I am and if you tell me to snap out of it I'll probably mentally snap on  you.
9. We depend on healthy people to be around us.  

Here are some helpful things to say to people who are being torn down every day with chronic pain.

1. This must be so difficult for you, I can't imagine.
2. I wish I had something to say that would help/take away the pain but i don't.  But I am here to listen.
3. I hope that today you are feeling as well as possible.
4. You are in my thoughts and prayers.
5. You look good today, but how are you actually feeling?
6. I love you.
7. Do we need to cut our visit short so you can rest?
8. Would you like to hear about this crazy adventure I had yesterday.

Oh and one more thing:  we still have a great sense of humor.  We don't necessarily appreciate jokes at the expense of our chronic pain...but we do love to laugh.