I have been trying to wrap my head around how years of chronic illness may have subtly and not so subtly shaped my thinking. Recently, I stepped down as co-coordinator of San Diego Bisexual Forum and with all this free time, I’m pondering how to occupy myself.
Over the past few years, a pattern has emerged in my life. Summer-like weather is accompanied by a surge in energy and each year there’s a little more than the last. About the beginning of April, I start considering how I wish to spend this “excess.” The first time around in 2007, I simply enjoyed being able to do more than normal. In 2008, I became involved with Bi Forum. Last June I decided to start this blog. And this year? I’m having a crisis of confidence. Doubt fills me at every turn.
Nineteen years of chronic illness has taught me to discount whatever I want as soon as the thought pops into my mind. Noting perfect beach weather, I begin the list of cons immediately. Walking on lose sand makes my hips hurt. Cold water isn’t much fun. Sand gets everywhere. It takes energy to clean up stuff later and I’m already tired. Besides, it takes a car to get there. With all that, I no longer want to go to the beach. I want a nap.
As anyone in shoes similar to mine will tell you, doing too much or pushing yourself too hard risks making your symptoms worse. Unfortunately, there is no precise formula by which you can determine the value of “too much” or “too hard.” Moreover, those values change constantly based on what seems like an infinite number of factors. Educated guesses can be made, but it is no more an exact science than solving the chicken or egg quandary. Thus, if I don’t talk myself out of wanting to do something, I still have no way to know for certain that going for it will not worsen my symptoms.
And then there’s how chronic illness impacts confidence. The skills and talents necessary to build a group from the ground up are not those used to manage a chronic illness. While I was unable to get off my couch, any gifts I did not use to cope with that situation atrophied and as with a limb that has not been used for a prolonged period of time, the chance it will hold your weight at first attempt is miniscule. Until I actually try, I have no way of knowing if my abilities have vanished while I was in survival mode.
One of the ways humans know about their skills and talents involves affirming feedback. When we succeed, we not only directly see the positive effects, but also we receive accolades for our efforts. With chronic illness, there is no real way to shine. Getting off the couch, managing to shower, and et three square meals in one day is just not fodder for building self-confidence
Here I am contemplating endeavors I have never tried before. My mind is well practiced at generating all the potential problem areas. I have vivid images gained from experience illustrating how bad it can get if I push too hard or do too much. I’m hoping atrophied mental muscles will meet a challenge, though I lack concrete evidence. To top it all off, I have no recent evidence of success in the areas I am considering attempting.
Knowing all this is not the same as understanding a means of combating it. Acting in spite of fear and having faith are two possible techniques, but both require emotional energy and fatigue is incredibly insidious.
Besides, the couch and a good book have a power all their own. They call to me and say, “Why try so hard and struggle when you could choose something that makes your life easier? You can feel les tired, not do something that risks your health, and enjoy yourself. Isn’t that better?” It boils down to picking a wish that causes every instinct honed over years of living with a chronic illness to jump up and down with objections.
But my heart wants and I cannot totally silence it.