If there is one thing you get good at when you have a mysterious medical condition, it’s the art of waiting. So much about having sarcoidosis is a waiting game. You have to wait in many a doctor’s office. You have to wait for test results and lab work. You have to wait for the doctor’s call. You have to wait for a proper diagnosis. You have to wait to see if treatment will help. You have to wait to find out if you’ll go into remission or be chronic. You have to wait to find out how disruptive the disease will be…what it will take and how it will change your life.
Waiting can be maddening and worry becomes a bitter enemy. It must be guarded against. We cannot make ourselves crazy with “what ifs”s or “maybes” or “could bes” because anything can happen with this disease and when we get caught up in the unknowns, we miss out on the life we still have to live. Learning to wait is very difficult in the beginning of the sarcoidosis journey and while it doesn’t get easier, exactly, it does become a skill we learn to hone. We learn to manage the art of waiting because eventually we accept that the unknowns are always with us once we have this disease. We never know what it will or won’t do so even as we learn to live with it, there is always a quiet part of us that waits.
If we let it, the fear of what’s to come could swallow us whole and we can lose ourselves in it. Learning to manage all forms of waiting is part of learning to cope with a chronic condition. A disease like sarcoidosis, ebbs and flows. It’s up and down and everything in between. Accepting its unpredictable nature is no easy task but without acceptance comes insanity. The trick is learning to keep living despite our silent fright of what else this disease might try to do to us.
There are a couple tools we need in order to master the art of waiting. We need distraction and we need gratitude. Distraction helps us think about something other than ourselves and our own pain. Distraction comes in many forms but finding healthy distraction can do wonders in restoring our sense of usefulness. Helping other people when we feel the most uncertain, is often the very best medicine in quelling our own anxieties. Doing for others restores our hope and gives us purpose. Practicing gratitude is also a powerful tool in the fight against angst and tension over what is already out of our control. Writing gratitude lists helps and so does focusing on what we have that is right and good in our world rather than on what we cannot understand or don’t have answers for.
Letting go of the worry that comes with waiting is a process. It is not a one time action. As this disease flares, it’s natural and right to be concerned but it is not healthy to be consumed by worry and to dwell on what is ultimately out of our control. Instead, we fare better when we take life a day at a time, love the ones we are with, take care of ourselves the best we can and try, no matter how difficult it may sometimes be, to enjoy the grace we given.