Chronic confusion

So here’s the thing about chronic pain:

It’s a very lonely thing. And yet it is with you constantly. Every day to some degree. Some days more than others. Most of the time you ignore it. It takes years to hone that skill but when you get it, man, you are so proud. You get your life back. Well, a life. Not the life you had before the whole pain thing became your norm, but at least a life worth living and one that brings joy and happiness even if it isn’t in the form you always imagined.

When you really get good at it -- at managing the constant jabs and aches and reminders of a body less than ideal -- the people around you forget. That’s when you know you’ve really got it down, when your friends forget you have back problems because you “seem so normal.”

It is a bizarre juggling act, those times when the pain makes you cross-eyed and want to fall to your knees in tears. The last thing you want is to be dramatic or to draw attention to yourself…your less-than-perfect, less-than-able-bodied self. So during those times, the times when you are looking around to see who is wielding the knife or cattle-prodder, during those times you get quiet. So very quiet. Because you know if you speak, it will be through tears. So you withdraw and only really speak when spoken to. You pray that nobody will ask how you are feeling for fear that you will collapse in confession. But you also secretly hope that somebody will notice your withdrawal and seek you out privately, quietly, to ask what is wrong. Because something is wrong. You are consumed by fear.

Like Eskimos with snow, those who live with chronic pain can describe the tiniest variances. Electrical. Sharp. Stabbing. Deep. Shallow. Muscular. Tingling. Spasmy. You eventually learn which adjective requires which med. You get to a place of confidence, that you know your body and you know your pain and you’ve got it all under control. But then you get smacked with something new and the fear takes your breath away.

You are reluctant to mention the new pain since it only brings a slew of well-meaning suggestions. Everyone has a story, if not at least an opinion. We all want to help; that is the beauty of being human. But when in the throws of pain-induced fear, a list of “you should”s only adds to the anxiety. You just want the pain to go away. The thought of researching chiropractors or acupuncturists or herbal remedies or something on an informercial or orthopedic shoes or a new mattress is just so overwhelming. You don’t want homework; you just want to be able to see straight. So you keep quiet, to avoid the helpful hints. Yet you are grateful for the hints because they come from love and care, leaving you wracked with conflict about loving the messenger but hating the message.

I wish I had a clear road map to give to those whose loved ones live with chronic pain. Being the support system has got to be one of the most confounding, unpredictable, frustrating, and emotionally draining roles you never hope you’ll be challenged to take. Those of us in pain often naively think we are the only ones suffering when in reality our ripples are far-reaching. Unfortunately, when in the throws of heightened pain, it’s hard not to think selfishly. And so I am especially grateful for the grace and mercy extended to me by friends and family, whose faces show such concern and love and helplessness. Thank you for your love. Thank you for your suggestions. And thank you for your patience.