Papercut and colored pencil art by Sheryl Aronson X 5

Tuesday, October 5, 2010

How To Explain Your Illness To Others, Part 2

For many of us living with chronic illness, the two biggest problems are fatigue and pain.  In my most recent post, I wrote about explaining fatigue to others.  In this post, I want to share some thoughts on explaining chronic pain to others.  Everyone experiences pain differently.  For most people, pain is a temporary condition, with a specific cause, and options for treatment.  They take aspirin, rub on some Ben Gay, and within 20 minutes, or maybe a few days, the pain is gone.  They don't understand why our pain doesn't go away.  They may thing we are exaggerating, or just like to complain.  
Even for each of us with chronic pain, our experience is different.  Some people have constant, unrelenting pain, others have intermittent pain, or pain only when they do certain actions.  Some have pain that is burning, or shooting, or stabbing, or aching.  It can be sharp or dull, or throbbing.  Most people can understand these descriptions of pain.  What they can't understand is what it is like to have pain and not be able to get rid of it, no matter what we do, to live with it 24/7.
Here is a great description of living with pain.  I found this on a blog called the How to Cope With Pain Blog.  He has a Blog Carnival every month, where he lists a number of blogs he as found that he thinks are worth reading. (They usually are).  One of the blogs he listed this month was 30 things about my invisible illness you may not know.  It is long, but worth reading.  One section of it describes living with chronic pain.  You can feel the frustration in her words of people not understanding.  I couldn't find the name of the person who wrote this, but her blog is called Kids By Hand.

I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger. But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe. “You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?
When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”
It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.
Just thinking about always having a pebble in the shoe hurts.  I never thought about it that way, but it makes sense.  Every time I use my right arm, it hurts, every time I step on my left foot, it hurts.  I guess my pain is like constantly having a pebble in my shoe.  I have times when I don't hurt (like right now, sitting in my lounge chair with my feet up), but I hurt whenever I move or go to do anything.
I would like to hear from my readers:  How do you describe your fatigue, pain, or other symptoms to others?

1 comment:

  1. This article have big help to the people specially having back pain or any pain great job.