Fighting an Uphill Battle

Why is it so hard for others to understand that chronic pain actually exists?` In fact, 1.5 billion people suffer from chronic pain around the world.  Can you believe that one out of every six people has some sort of chronic pain?  In fact, as I was looking up the numbers to share here, I found The American Academy of Pain Medicine’s website; this is a wonderful resource for looking at the facts behind this general disorder.  While all of us have different diagnoses, it all comes back to the chronic pain.

Chronic Pain Website

While I will let you do the research yourself, it was interesting to discover I have three of the four most common types of chronic pain:  severe headaches, back pain and neck pain.  And since I’m on disability, I’m part of another statistic. Most Americans on disability under the age of 45 are unable to work because of back pain.  That’s me!  Diagnosed at age 39, soon to be 44.  This is definitely not the future I saw for myself.  Unfortunately, an experience I had years ago clued me into the fact that many Americans don’t believe this kind of pain exists.

In 2004, my mom was driving my dog Samantha and I back to their house in Owatonna when a teenage girl ran a stop sign.  She hit the driver’s side and forced the vehicle to spin 360 degrees, eventually landing in someone’s front lawn.  I knew how much money it was going to cost to get steroid injections in my neck and back for the rest of my life, and I couldn’t afford to pay for all the ongoing treatment I would need for the years to come.  So when we took the young woman to court, the other lawyer dismissed the only people who knew anything about pain from the jury pool, so that we were left with a jury filled with conservatives who didn’t believe in chronic pain.  Needless to say, the jury didn’t find in my favor (it didn’t help that my attorney turned out to be a dud too), and the teenage girl didn’t have to take responsibility for breaking the law, nor the consequences of her actions.  In fact, it was this trial that made me realize people need to be educated about the existence of chronic pain.  Because unless you have experienced it or know someone who has, it is very difficult to understand how anyone can be in varying degrees of pain at any moment of every day.  

Many of you may be wondering, did the accident cause the dystonia?  My physical rehabilitation doctor said it didn’t; that the symptoms would have appeared closer to the time of the accident.  So I’ve been accustomed to experiencing chronic pain for 10 years now, only it’s worse with the additional cervical dystonia symptoms of muscles spasming and the pulling of my neck.  

As I was talking with a friend last night, I thought back to an accident my Grandpa Shaw had back when he was working for the South Dakota Highway Department.  At the age of 50, he was still out tarring the roads.  Since both of my grandparents are gone, we have to rely on the memory of my dad, who was pretty young at the time.  He thinks that some tar or another hard solid object flew into his left eye.  For 2 years, the doctors tried to heal his eye, but it only got worse.  So they removed his eye and replaced it with a glass one.  Could he feel it?  Was he in pain?  How did this change his life?  No one knows how this affected him because my grandparents never talked about their misfortunes.  In later years, they had plenty to complain about, but they never talked about the incredible traumas they experienced earlier in their lives.  You’d never know my grandpa had a glass eye, just by looking at him.  But that’s the curse of the invisible pain syndrome.  Just because you can’t see it doesn’t mean it doesn’t exist.  And given the advances in medicine over the past 50 years, I can only imagine how much pain he must have been in all those years ago.

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So as my friend was dropping me off last night, I turned and asked her how it had affected her quality of life.  She had experienced a traumatic accident the summer before and lost one of her eyes.  I asked her if she suffered from chronic pain.  She described how she can always feel the glass eye and that it is irritated a lot.  But it didn’t sound like she thought of it as chronic pain.  “I just hope it gets to the point where I won’t notice it at all,” she said.  When she started talking about how careful she has to be with her eye when she takes certain medications for it or else she can give herself a black eye (just by accidentally rubbing it), I couldn’t help feeling like she was experiencing the fear of chronic pain.  With her incredible inner strength, it’s possible this is not how she feels at all.  I just know if I were wearing those shoes, I would be in fear of the chronic pain I could create with one simple body movement that would never affect anyone else if they did the same thing.  What else would you call this?  Chronic irritation?  Chronic awareness?  Chronic ability to accidentally injure your eye literally in the blink of an eye?  And she faces the same invisibility factors.  On the one hand, she looks better than ever, and you certainly can’t tell she has a glass eye.  On the other hand, what you can’t see really does make it appear nonexistent for many people.  How do we get people to understand that no matter how visible (or invisible) pain is, it affects over 100 million Americans alone, every moment of every day.  Chances are good that you won’t be able to recognize people with chronic pain.  We hide it well, which is a double-edged sword.  No one wants to look deformed and completely abnormal, which is exactly how I looked when I was first diagnosed with my dystonia.  Yet, people wonder why you can’t work when you look so good, and they really don’t get how we need to plan something as simple as getting a ride with a friend so that we can prevent the pain that goes with riding in a car from becoming unbearable.  

MY HOPE:  I hope that more people will share their stories on this blog so we can learn to understand what it’s like for a variety of individuals to live with and manage their pain.  I never would’ve asked my friend how her loss had affected her if I hadn’t been writing this blog.  She has all sorts of strategies and gadgets she needs to use in order to have the best eyesight possible at this point in her life.   

If one in 6 people in the world have chronic pain, then there’s a good chance you are meeting several of us throughout the day.  And most people want to have their stories heard.  My hope is that you’ll listen, and listen actively.  Talk with others.  Ask them questions.  Acknowledge their frustrations, yet realize they are living their lives to the fullest extent, even with a mural of pain as their backdrop.  The pain doesn’t define us.  We are constantly re-defining ourselves.

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2 thoughts on “Fighting an Uphill Battle

  1. These passages are so endearing and real and simply beautiful to read because of their openness and vulnerability. Your writing flows so naturally and it is very educational and informative to those who never encountered chronic pain. I think the word ” chronic” is the scariest and most misunderstood concept. All of us deal with pain occasionally and somehow we may hope that, even if something is chronic, its pain will diffuse and not affect us on a regular basis. I think it’s very important to constantly reframe that pain and discomfort into a larger context so that it can be a “part “of our lives vs our entire life. Keep on writing and hoping and being energized by all your small and big discoveries of the current reality. What stays true is that all of us deal with major challenges and pains at one point or another in our lives, so that human experience is a given. Your challenge remains finding ways to outgrow this challenge. As Wayne Dyer used to say, “we never solve our major problems, we learn to outgrow them”. It is so true, indeed. Love and hugs to you.

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    1. Thanks for your feedback, AB. I’m not sure what Wayne means about “outgrowing” a challenge, since the pain will never go away. I look at it this way. My pain is like the sky, always there hovering above me. Sometimes, it trickles rain. Sometimes there’s a downpour. Sometimes it hails, dime-shaped hail or golf-ball sized hail. Sometimes there’s a storm or tornado that destroys homes, businesses, and may even kill people. These are the degrees of my pain. I wish I could say it never started to rain at all, but at this point, the sky only serves as a conduit for the rain/pain. All the people who help when there’s damage during a storm are my support system. Although the pain is always in my life, it’s how I choose to speak up for myself and find alternatives regarding disability that really matters so that the pain doesn’t have to control me. Thus, I am the CEO of my life, and though I have to take the pain into consideration when making decisions for just about everything, I can bring in support systems to help make life and what I want to experience more manageable. I hope that makes sense. You may read that metaphor in the future because the more I think about it on this rainy day, the more it really fits with my situation. And it all began by thinking about your comment!

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