Living With Chronic Pain

Graded Exposure Therapy

Living with chronic pain is overwhelming. We learn quickly to do whatever it takes to avoid pain. Can’t walk more than a few yards? Then only walk a few feet before resting. Can’t bend down to pick something up off the floor? Then leave it or use a device to help. Struggle with stairs? Never use them. Trouble getting out of the house? Stop all together. Scared to interact with others for fear of what they’ll think of your limitations? Isolate.

We believe that by avoiding situations we are helping to not only prevent pain, but let it heal. In reality we are doing the opposite. 

The more we avoid activities that trigger our pain the more sensitive we become to the possibility it will hurt and the less we do.

Until we stop doing anything at all.

Like the mime’s box that gets smaller and smaller until it crushes us altogether.

It’s a natural reaction. No one wants to hurt. And we certainly don’t want to make it worse.

Too often, caring friends or family will even encourage that belief.

When my mother was alive she used to routinely ask what I did to cause an exacerbation. Which just made me feel guilty and convinced it was my fault when I tried to push the boundaries of my enclosure.

It isn’t.

I didn’t run a marathon,

I didn’t lift a fifty pound box. 

I just went to the park and played with my little girl.

Or vacuumed up a mess.

All part of life. All part of what I had to do to not just survive but enjoy life.

In fact I was doing exactly what I needed to do- work through the pain and live with it.

Attaching guilt, fault and shame is never appropriate.

Too often it’s the fear of pain that stops us, not actual pain. We worry that a particular activity will make it worse, we anticipate that outcome and then it happens. This is called “catastrophizing.” In layman’s terms, we get what we expect. A poor choice of labels that implies histrionics and pretense. Our pain is neither. Pain is pain. Period. If you feel it, if it impacts your life, don’t let anyone deny it. As I’ve shared, we’ve only recently learned how pain can persist long after an inciting event is gone because the pain itself changes our nervous system and perpetuates it.

Eventually we believe the agony will never go away so we become hypervigilant, trying to figure out what triggers it. We start to focus entirely on our body, trying to assess how it feels, when, where and why, scared and sure anything will make it worse. And then everything does. Eventually the brain becomes sensitized and conditioned to these fears and thoughts until they alone can actually create the very pain we’re trying to stop.

Avoidance becomes the ritual of the day. In the short run it feels good to be in control and diminishing our concerns and ultimately our suffering. But in the long run we are just reinforcing the avoidance behavior and telling the brain those activities should illicit pain whether they will or not.

The more we avoid, the less we do. The less we do the more we avoid. It becomes a vicious cycle that spirals into worsening depression, anxiety, inactivity and ultimately isolation.

When my daughter was four I had already been through multiple low back surgeries. My neck didn’t come until decades later. After one particularly difficult surgery where a couple of levels were fused, I swore I’d never have another one. I’d be extra cautious, preventative in all activities. If I even thought it would hurt, I wouldn’t do it. I went to work, came home, took care of my baby and rarely did anything else. I realized pretty quickly this was no way to live or raise my daughter, so I looked for more appropriate means to deal with my pain. 

The obvious, but much maligned, option was to start exercising to improve strength, endurance and mobility. For most of us living in chronic pain exercise is a four-letter word. We hurt already, how can pushing our bodies further be of any help? After a ten hour workday the idea of moving any further, let alone exercising, was nauseating. Clearly it was ridiculous. But it was time to put it to the test. Prove once and for all something else had to be the answer.

On a quiet Sunday I got on my treadmill and walked for twenty minutes. Within an hour I was in bed wondering how I was going to get through the night.

“See”, I thought, “I knew I couldn’t do it!”.

Armed with proof, I reassured myself avoidance was the truest path to keeping pain levels lower.

As I’ve said. . .beware, FEAR- false evidence appearing real.

Not the fear that keeps us protected and out of harm’s way, rather than one we turn to when we want to stay away from potentially difficult situations. The FEAR we encourage when facing the truth is too hard a task.

By the next weekend I’d had time to work through my issues and admit walking a mile the first time was the problem, not the attempt to walk more. That day I only walked for three minutes. 

I survived.

After a week of walking every night for three minutes I went to four.

Each week I felt safer, stronger, more confident.

Eventually it became a part of my life. The way I decompress at the end of a long day. The way I get my entire body working as it should, in unison, to strengthen, stretch and move all my muscles, surging nutrient filled blood to all areas. Coursing pain relieving endorphins to my brain. It’s the only time everything feels in sync. My limbs, back and head finally moving together as they should. 

After multiple neck surgeries I switched to an elliptical to decrease the impact on my spine.

Now I use it 30 minutes a day.

On those rare occasions when I don’t feel up to it I give myself a break.

This is how graded exposure therapy works. It starts with baby steps, attacking situations that elicit the least fear and working through them. Then slowly increasing to bigger ones. For those of us suffering from chronic pain accepting it won’t miraculously resolve is the first step.  Then the goal becomes- learning to live with our pain

Next week I’ll discuss how you too can benefit from graded exposure therapy.

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