Building self-esteem in pain

Fifty-eight percent of chronic pain patients I surveyed say that they have not gotten used to their pain. The other 42% responded with, "depending on the pain, you can get used to it." But what does that mean, exactly? For most people it's not that they can get to a point where they can ignore the pain. That was actually a rare occurrence for folks. What was more common was the learned ability to do activities in spite of the pain. If pain is forgotten, it's only momentary, and far too fleeting. And there are always still days that overwhelm. Most all respondents expressed some self-censorship. Other people, healthy people, don't want to hear about our pain. We learn the hard way that when we're asked how we're doing, we should have a polite answer ready and not use the real answer.

So that I'm not actually lying, I'll respond, "Hanging in there." It sounds positive enough, and it's true. That's one of the things most isolating about something that only we are suffering. I lived through the great Midwest flood of 1993. There were parts of St. Louis that became islands, as bridges and roadways were under water. Everyone knew the need to share about this trouble or that catastrophe because it was too much to keep it bottled inside. Everyone knew someone affected and could commiserate in the loss. Everyone had a sense of despair. When we mourned, we mourned together. The shared sadness was a bonding experience. We were a community, crying in one anguished voice.

Chronic illness is its own private hell. If you look good, healthy people can't understand what all the fuss is about. If you don't look good, people will treat you as though you have contagious, even when you don't. It's primal: we're hardwired to avoid sickness and seek health. People may not even know they're reacting that way, but it's in body language and tone of voice. Healthy people become stand-offish. Worse still, some of us experience bullying and name-calling during physically low times. It's sometimes really difficult for other people to understand our limitations. We're not saying, "I can't..." for attention. We're saying, "I can't..." because there are nasty consequences on the other side if we even try.

What I've learned to do is bow out gracefully. I thank whomever for the invitation, and give some polite reason like, "I think I should rest up a bit tonight." I only ever mention I'm in pain if there's something that I want done about it right now. Oh, to be sure, I have the occasional whine and moan, but it's brief. I've learned over the years that I can't afford to be self-pitying. It becomes too easy for me to make excuses as to why I shouldn't be responsible and keep my room clean or do the dishes in a timely manner. Yes, it almost always feels better to rest. But nothing gets done that way. When I adopt a "get 'er done" attitude, I may pay for it in increased pain and decreased energy, but I feel better in my soul.

I always feel better about myself when I treat myself with respect, when I act responsibly, and when I take care of my business. I heard a motivational speaker phrase it as, "to build self-esteem, do esteemable acts." I would add the caveat, "when no one is watching." It's one thing to do the right thing when there's an audience to cheer your heroism. It's quite another thing to be good for the sake of goodness. Yes, making my bed every morning is a pain in the butt, but the whole room looks nicer and I feel better about myself and my environment when I make the extra effort. Vacuuming my bedroom may take an entire afternoon and evening's worth of energy, but it's those constant little reminders of "I'm doing the right thing" that allows me hold my chin up.

I once had a vision when I was in a level 10 migraine. The pain was excruciating, and I was soaking my neck in hot water to try and get my shoulders to unknot while holding an ice pack on my head to keep the pounding at bay. My vision went white, and I saw myself, as an adult, walking hand-in-hand with me as a child. I told myself, "You do understand that this child is within you, right?" I was a strong believer of the inner-child methods in psychology. Working with them had helped me a great deal through the years. In the vision, I nodded yes to myself. My other-self got really stern and demanded, "then how the hell can you tell this child that it's okay to be in that level of pain?" It was then that I finally stopped toughing it out and I took the pain pills.

It's the same way with being responsible towards myself. When I don't clean my living space, when I don't take care of my appearance, when I don't behave as a responsible adult, I'm telling my inner child that's the best she deserves. When I break a promise to myself as adult (because sometimes it happens) I make sure to stop and explain to myself why I made the decision to do that. I know I'll feel sad for not keeping my word, but sometimes it can't be helped. I tell myself, "Go ahead and feel bad... take the hit. We screwed up. But it happens. Dust yourself off and do better next time." I do that so that my inner child understands not to take it personally. We're not doing bad because we are bad. Sometimes bad stuff happens to good people. The point is to keep trying. That's something to be proud of.

As my dad likes to remind me, "It's not the mistakes we make that matter... It's how we recover from them that counts." Yes, I'm in chronic pain. Yes, of course it impacts my mobility, my activities, and how I live my life. No, I don't talk about it as much as I would like. I remember a time before my disease and the powerful woman I was. That still hurts to be reminded of when I can't do something. But today I'm learning how to be powerful in more subtle, and I believe, more substantial ways. Where I've lost the ability to be exuberant, I've gained a lot of wisdom to take it's place. I can hold myself in esteem despite the pain.