Have you ever been the recipient of a well-intentioned comment like, “You should just…. (take a walk, meditate, pray, take antidepressants) and then you’ll feel better?” The well-intentioned person is usually speaking from some form of personal experience, probably not a personal experience with chronic pain.
I call that getting “shoulded on.”
With any chronic illness or injury, including mesh injury, it’s just not that simple. If the suffering person could do this “something” that he or she “should do,” it’s likely that person has already been there, done that. And it’s likely whatever “it” is didn’t work. Sometimes, these well-intentioned “you shoulds” make the chronically ill feel a sense of shame and failure.
A common and natural reaction I’ve observed in response is:
“Well, don’t you realize that I have tried EVERYTHING, and if it were that simple, I would be doing what you say I SHOULD do, and I would feel better, and of course, I’d keep doing the very thing you’re suggesting I SHOULD DO because it would work!”
Again, well-intentioned suggestions are just that, but most people would be surprised at the lengths the chronically ill have already gone to, to remedy the pain and loss their condition brings.
Most people who suffer with a chronic, debilitating condition live life day by day, or often, hour by hour, minute by minute or second to second, struggling and coping.
In the reality of chronic illness, when asked, “How are you doing today?” many sufferers shudder at the thought of what response you might be expecting, and the only honest answer is, “I have good days and bad days.”
So on the bad days, here are five things I do for myself and with those I love. I don’t think you should try them, but if you want to, you can.
5) I look for a distraction/diversion – Chronic is a full-time job. That means pain, fatigue, depression, discomfort and all forms of illness never take leave fully of their victims. Can you imagine having to feel and cope every single minute or every single day? Even a second of distraction is worth any amount of effort. Example: Today, God gave us the good fortune to witness a swarm of honey bees settling down to begin building their comb and hive. What a miraculous diversion. I’ve never seen a swarm of honey bees. It was a delightful distraction.
4) I Learn Something New – about anything other than illness or how to cope with it. Chronic illness narrows our experiences so much that it can sometimes feel like there is nothing more to live for, nothing left to gain from life. A hint of the extravagance, vastness and the majesty of the universe awaits in a single new thought, word, or path. Learning something new can be the springboard for new experiences when we’re well enough to leave the hospital, the bed, or whatever kind of incapacitation with which we suffer.
3) I Call a Friend – This idea seems trite, but it isn’t. It works. The trick is to call the right friends. Call someone who loves you, someone who has walked through your journey with you, someone who’s a good listener, someone with empathy. Sometimes chronic illness crowds out the blessings of life. None of us can make an old friend. Someone who’s stuck by you through your illness obviously loves you. Give them the chance to show that love by calling and asking for help through a hard day.
2) I Get Creative – You really don’t have to be Rembrant or Andrea Boccelli to gain joy from artistic endeavors. A pad of art paper, a lap desk, and a set of pastels can go a long way. Science has proven that changing up the way we express our emotions can help to reset the mind and our negative thought patterns. Listen to a new type of music with headphones. Draw the colors you hear; draw the shapes you feel; create an image from the music or lyrics. Self expression through art is surprisingly rewarding, and surprisingly unrelated to how good you are at it!
1) I Show Gratitude – Some days are just bad. We all know it. When nothing works to relieve the pain and discomfort of chronic illness, sometimes our best option is to just get through the day the best way we know how. On days like these, I pray. I thank God for the good I have in my life. I try with all my might not to ruminate over what I don’t have or what isn’t fair, how things could or should have been, or the dreaded “why me?” Instead, I thank God for my husband, my mother, my home, my sweet dog cuddled up next to me. If I’m feeling a hint better, I write notes of gratitude to others. I tell them what I love about them and that I’m grateful for their friendship. On some days, all I can muster are spoken words or thoughts, interspersed with “thank you.” In other words, I try to ruminate on joyful thoughts and the blessing I have.
And honestly, some days none of the above works. I still feel horrible. I still can’t get out of bed, but that doesn’t stop me from trying. When I’m at the bottom of the bottom, there is literally only one direction to go, so I move away from the bottom, and the more skills I have to do so, the better.