My name is Bree and I have been living with chronic pain for nine years.
Chronic pain is exhausting. Debilitating. Demoralising.
The list of adjectives goes on.
It is a collective burden. Family, friends and caretakers live, fight and endure the comprehensive effects of chronic pain just as much as we, the patients, do.
A lot of emotional turmoil comes with the territory for our supporters:
“I feel helpless.”
“I don’t know what I’m supposed to do.”
“I wish I could take it away for you.”
“It shouldn’t have to be this way.”
Sadly, there is no instruction manual for anyone whose life is impacted by chronic pain and the challenges that come with it. We are all trying to navigate the murky waters as best we know how.
I would like to share six insights in the hope of helping others in similar situations to move through this shared journey just a little bit easier.
1. It starts with understanding.
Despite the most dedicated and loving support network, managing chronic pain can be an isolating experience.
There is a famous quote from the novel ‘To Kill a Mockingbird,’ as written by Harper Lee, which sums it up perfectly:
“You never really understand a person until you consider things from his point of view… Until you climb into his skin and walk around in it.” ~ spoken by Atticus Finch
Let’s do a quick exercise together to get a glimpse into the life of a chronic pain patient:
• Visualize a time when you experienced physical pain.
• Vividly recall the sensations. Emotions. Thoughts. Reactions. Can you feel it yet?
• Multiply the intensity. By a lot.
• Imagine that pain being present 24/7 with little to no relief.
• Then think about this happening for the rest of your life.
Pretty overwhelming, wouldn’t you say?
2. There is a Code
I will often attempt to downplay the extent of my pain with the language I use.
Not to be deliberately deceptive or non-communicative. It’s to shield. I know how much it hurts those closest to me to know that they can’t take my pain away.
Examples of my ‘code’ include:
• My legs are a bit sore = My legs are driving me nuts.
• I’m having a bad day = I am in a world of pain so don’t mess with me.
• I’m having a flare-up = Houston we have a problem!
Sometimes there are no words to adequately describe how I am feeling and it is easier to just say “I’m fine” even if I’m far from it.
3. A good set of ears
I don’t want to be seen as a complainer so I tend to iinternalize my feelings. If I reach out, please take a moment to stop and really listen. You don’t need to say anything. It is not answers I seek. Compassion and connection are enough.
4. Help us out with the low hanging fruit so we can save our energy for the big stuff
Daily activities can become monumental undertakings. For instance:
- I struggle to twist the cap off a bottle of water.
- My arm burns when applying make-up or straightening my hair.
- Buttons and zippers present quite the challenge.
But if I avoided all activities that caused me pain I wouldn’t do anything. So it’s all about prioritizing (hint: it won’t be housework!) and pacing my activities. And learning to swallow my pride and accept support when it is offered, rather than struggling along.
5. The Yo-Yo effect
Pain is so variable and different parts of my body can be in more/less pain at any one time. Just because I was able to swing from the rafters yesterday doesn’t mean I can back up the performance today. Sadly I am no Katy Perry!
So please, think twice before hitting me with the “But you did it before” pep talk.
Understanding and respecting physical limitations goes a long way in showing that you care.
6. Looks can be deceptive
The pain itself is invisible; we only see the reactions to it.
I have lost count of the number of times I have heard “You look fine” when inwardly my body is screaming at me.
My sense of style didn’t turn off when my pain turned on. I like to look as ah-mazing as possible. It helps me feel better about my situation and is one of my many coping mechanisms.
I work hard to not let pain define my life and I choose to be happy. It doesn’t mean that my pain is gone, just that I have found a way to survive.
So please, no throwaway lines:
“You don’t look like you are in pain.”
“Just deal with it.”
“You will eventually get over it.”
No “faking it” comments either.
I am doing the best I can.
Love elephant and want to go steady?
Author: Bree Hogan
Editor: Renée Picard
Image: TheeErin at Flickr