Living With Chronic Pain

What Living with Chronic Pain Means to Me

How many times have you been shamed into doing something you knew would exacerbate your pain? Or felt guilty because you couldn’t participate as much as you’d like, or slowed others down when you did? Pushed yourself beyond your comfort zone because you didn’t want to disappoint?

I’d hazard to say a lot. I know I do.

Why is it so hard for us to honor our bodies and needs? Why is it so hard to say,

“I’ve had enough”?

I resist acknowledging my needs and using a cane when I’ve surpassed my capacity. I begrudgingly get into a wheelchair when I pushed too far and there’s nothing more to give, because I feel old and frail when I do. It’s not so much that appearances matter, although I sadly admit to that vanity. In my head I’m still the younger version of me. The one who did back flips in gymnastics, rock climbed, slept on the floor of a train to see Europe, and jogged 2 miles a day. Letting go of that version and accepting my new one is a daily struggle that has lessened with time. Each day I get better at accepting where I’m at now, and appreciating what I can do. Until the cane or wheelchair is needed! It’s a bright, shining signal that reinforces my challenges, and more often means I’m slowing others down or asking for their assistance. A fate worse then death- asking for someone’s help. I have to keep reminding myself that they want to help, they don’t want me to suffer, but all I feel is a loss of independence.

Even the whiff that I’m imposing shuts me down and throws me into,

“I can take care of myself” mode.

Too often it’s really my own perception and belief I’m imposing, reflected onto the person offering, not their true perception. If not stopped in its tracks this usually led to anger and arguments they never understood. And rightly so, it was all one- sided! It was my own hurt pride talking.

I remember when my daughter was 6. We were visiting Orlando, Florida and she desperately wanted to see all the parks. I didn’t want to be the Mother who couldn’t participate in such a momentous experience. Who wants to deprive or miss that first look at Disneyland? But after one of my back surgeries, I struggled at Universal Studios just to get from one ride to the next. As we approached, a young man came over and very nicely informed me that handicapped people could use a different entrance. I was shocked and a bit appalled he thought I was handicapped! Yes, I was using a cane, but that was going too far. He politely made it clear that the new disability act demanded anyone needing additional assistance be given aid, by allowing easier access. The label initially disturbed me but rapidly diminished when I realized the wait time dropped from 2 hours to 20 minutes and a 5 block walk dropped to nothing when a shuttle was used. I was in heaven. I could finally enjoy more of the park, longer and with less agony. An outcome that enriched everyone’s day.

That was the day I realized how much I valued the way others saw me. I didn’t know the young man at the park, but I’d rather be in agony, suffering a greater level of pain than admit I was done, needed assistance, or had to rest. I was better than that. I was stronger than the pain. It wouldn’t win. I finally started to wonder exactly who was the winner? It certainly wasn’t me.

I was on a New Years cruise with my daughter one particularly difficult time. I was adamant I could tolerate the pain in order to enjoy the holidays, so surgery was postponed to January. There we were, all decked out, looking fabulous, until the pictures were plastered all over the communal photo boards where you pick which to buy. I honestly didn’t know my smile could look like that.  It was more a combination scowl, please make this stop and if I have to pose one more second, I’ll die-face! Needless to say we had few pictorial memories from that trip. It was then I had to take a long, hard look at myself. Worrying how others saw me was a losing game. One I needed to stop playing.

Years later, I had low back surgery and 2 weeks after, foot surgery. Since I couldn’t bear weight on the foot for weeks, I was forced to use crutches outside the house and a scooter inside. I was amazed at the difference. Now I was approached constantly and asked what kind of accident necessitated the crutches? The attitude changed to one of comradely, as they shared their own “crutch story”. No longer the invalid or old lady needing assistance across the street, I was an equal to everyone who’s been hurt and survived. Crutches symbolized strength, not weakness. They’re a badge of honor depicting a hard fought battle that was lost. They require endurance and energy to use, not so, a cane or wheelchair. Clearly my perceptions were not so far off. I wasn’t treated the same way I was with a cane. I hadn’t changed. My issues were the same. Yet, others saw vigor instead of fragility. Ironically the reality was far different. I was more fragile on crutches. They took such a toll on my arms and back I could only tolerate short distances.

But that doesn’t stop the emotions and acceptance required to admit that. I had to stop being angry at physical limitations I couldn’t control and be happy with ones I could. My body wasn’t the enemy and neither was I. Through no fault of my own fate had brought me to this point.  I’m not sure how, or even why, guilt sneaks into the mix, but it does. It’s not uncommon to internalize restrictions as a weakness to push through. As though toughing it out will bring different results. And when it doesn’t, self loathing and feelings of inadequacy ensue.

At that moment we need to stop, take a deep breath and give ourselves a break. Agonizing over “why me” needs to change to focusing on what is next. Mourn the losses, but understand pain does not define who we are. It doesn’t negate all our other attributes. It’s just one small cog in the wheel. I’m still me. I choose how I deal with it. I can choose to participate in a way that doesn’t worsen the pain. And those who care about me will understand. More importantly, I needed to understand. I needed to give myself a break and let the anger and frustration go. Otherwise, everyone will be miserable. Once I moved past my perception of what I should be able to do, wanted to do, and accepted what I could do, I had fun. I let go of me and my issues and joined the excitement of the day’s activities.

dsc_0323-1    –Dr. Courtney

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