King of Pain

It may seem a bit obvious to say, but living in chronic pain is incredibly difficult.  If you, like me, find yourself in this situation, you know whereof I speak. If you don’t, I think it is difficult for you to understand what it truly is like to live a life wherein each step one takes is a painful one.  

I think part of the perception comes from how those of us with chronic pain are perceived.  If we have a cane, or a walker, or other obvious signs of a life lived with discomfort, it is easy for others to have empathy. They see the struggle, they imagine how they would feel if that was them, and they understand on some level how hard it would be.  They may even be motivated to help, or feel gratitude for their own good health.

When the chronic pain is less obvious, when we don’t always show the overt signs of living in pain, such empathy seems harder to come by.  This is understandable–we don’t appear to be in pain. We aren’t groaning, moving slowly, straining so much tears pour out of our eyes. How much pain could we be in?

This is a reasonable question, and frankly has no simple answer.  It is complicated by the fact that people may not believe you are truly in pain; perhaps you’re a whiner, a big baby, a wimp.  Suck it up. Be a man(advice sometimes inexplicably offered to females)! Shake it off! Medical professionals may also doubt you are in the level of pain that you proclaim.  It is understandable why medical professionals may be skeptical–they certainly have their fair share of patients who may be craving attention, hoping for an opioid prescription, or just afflicted with Munchausen’s Syndrome.

Being aware of why someone may not take your chronic pain seriously doesn’t make it any easier when someone doesn’t.  This is why it is important to have an understanding as to why many of us in constant pain don’t seem to meet your presuppositions of what it is supposed to look like.  There is a simple reason for this disjunct between expectation and reality:

We’ve gotten used to it.

Before I continue, I want to unequivocally reject the term “Chronic Pain Warrior.”  I once used this term myself; I suppose there was a certain dignity in it. I don’t think warrior is a good metaphor for this type of condition.  First of all, wars are fought by choice. There is a moral argument made by both sides during a war–the reason a soldier is fighting in war is an ethical one.  For a good reason, perhaps, but most likely for a bad one. Either way, being a warrior is a role that one chooses for oneself. I never chose my pain, and never would have.  So I am not a warrior.

What I have become (and there are so many like me) is one who has figured out how to adapt.  Being in chronic pain forces this type of adaptation. You develop an ability to cope. First you start by ignoring the pain.  When that doesn’t work, you find ways to distract yourself from it. Then, when that no longer accomplishes what you need it to, you finally reach acceptance. I am in pain.  I am always going to be in pain. I need to make peace with this, or I will cease to live, and my life will be replaced instead by a melancholy existence.

When you reach this acceptance, something remarkable happens.  Your brain finally understands what you want it to do, and your synapses continue to function in spite of your pain.  It’s always there, and you always notice it. But it doesn’t stop you from climbing out of bed, from showering, from climbing in and out of your car, from doing your work.  From walking and exercising. Yes, all of it hurts, and maybe you still wince from time to time, but you realize much to your surprise that you can cope with it. Why? Because you have to.  You have no other choice.

My pain comes largely from Parkinson’s Disease (I have other neurological issues that contribute to the pain, but that is too much to discuss here).   The aches and pains in my joints and extremities on some days can feel intolerable. The strain of constantly coping with the discomfort of Parkinson’s on my nervous system and muscles adds to the pain.  Indeed, my body developed a largely inexplicable back and leg pain that was originally assumed to be a herniated disc. I was given three cortisone injections, a facet injection, sent to physical therapy, a chiropractor (who succeeded in making my pain worse, while his office manager hounded me for payment before ever sending me an invoice).  Nothing worked. I was convinced it would never improve, and struggled mightily to reach acceptance.

Of course because nothing was working, medical professionals I consulted seemed to doubt I was in the pain I claimed.  The disc was not sufficiently herniated; and if it were, one of the treatments would have certainly worked. My orthopedist–who was perhaps the most empathetic of all of my doctors–suggested I take an EMG to ascertain the levels of which my nerves appeared disrupted by the pain.  The EMG was unpleasant, but the results were clear; I was in a great deal of pain. With no other option, a neurosurgeon got the brainstorm to treat my symptoms, and not continue to search for an underlying cause. I was prescribed a nerve pain medication, which worked remarkably well.   This meant I had damaged nerves in my lower back and legs, but from what? The only answer appeared to be the strain on my body from Parkinson’s.

Even though the nerve pain has receded, my good ol’ Parkinson’s pain remains.  This is a truth of chronic pain–you are never pain-free, there are just levels which are easier to tolerate than others.  This can be complicated and frustrating, because a medical professional will ask me whether something hurts–yes, of course it does.  It always hurts, whether you do what you’re doing or not. It just hurts more or less. The other strange side effect of being in constant pain is you don’t realize immediately if you hurt yourself.  You are constantly trying to figure out where any cuts and bruises originate, because you didn’t realize what you had done. Why is my elbow bleeding? Where did that bruise on my knee come from? Sometimes you can figure it out, but otherwise, you throw a band-aid on it and get on with your day. (By the way, the person who finally invents a band-aid you can open one-handed will become a billionaire.)

I know many with chronic pain can no longer function well, and have lost the ability to cope.  They tend to live very sedentary, probably unhappy, lives. I understand this completely–it takes a great deal of energy to be in chronic pain.  There are days when I don’t want to get up and face it. One of these days, I may become like them.

I don’t know when that day will come.  For now, I cope. But please, don’t call me a warrior, or some other New Age trope.  I’m in pain, and I’m alive. And if you aren’t able to see it or understand, I’m afraid my life is under no obligation to make sense to you.  It just has to make sense to me.