One of my most difficult challenges in dealing with a chronic illness is simply finding a place to "be" and breathe within the expectations and opinions and ideas of those around me about the illness. These swirl through my head with my own notions of where exactly to fit in everyone else's "stuff", what I "should" and need to be doing to stay healthy, and how best to beat the undercurrents of negative thinking that pull me under and make the illness seem stronger than me.
The people who have some of the most important roles in my life have such fixed and different ideas from one another, all valid and useful in some way, yet also conflicting. From believing wholeheartedly that allowing an illness to *be* incapacitating is part of what makes it so, to seeing times of increased struggle for me as their own personal failure or as proof that I won't ever get better, to evaluating my every action and word to measure the need for caution- the combined ideas of those who love me can make it much more difficult to cope. So many opinions, taboos, better nots, better to's, have to stops, have to starts. They encourage me to seek support, but then they filter what I bring to them by reacting to what they want to hear and pushing away what they don't. It ends up hurting my head and sinking my heart.
I'm whining, I know, and I know that I am so deeply grateful and lucky to have so much love and support. At times when I am feeling overwhelmed, though, my worries about disappointing or alarming or alienating everyone else or what I might or might not be doing that will make things worse or affect someone in my life just add to the problem. The jumble becomes so scary and isolating... Who can I go to for support when so much meaning is attached to what I need support for?
Sometimes I just want a place to let go and sit with my own feelings, let whatever is happening in my body and mind just take form for a bit without worrying about shoulds and shouldn'ts. Sometimes I just want to "be" to figure everything out for myself. I crave permission to stop fighting, to rest, to hide, to collapse. I crave validation for what *is* rather than for how well I'm managing, how I appear to be coping, how well or unwell I am, what my thoughts and feelings about everything mean and how to change them to maximize my health. I guess , though, that validation ultimately has to come from me.