Where is your best step in an uncertain world? Let’s just walk through this maize together. You either have been living with “incurable” since you were very young or are suddenly a collection of symptoms begin raining down upon you. Yes, this is an over simplification of our pathway into a myriad of chronic incurable diseases, some of which? Have the tag of “But you don’t look sick?” As you initially begin dealing with an incurable chronic disease as an adult or almost adult? You are almost swept under by the tow of your diagnosis/s. If you are among the many who take the long and winding road to determine what “is going on?” Then to be suddenly told? We know what is wrong? Yet we have no truly successful treatments, nor very much besides addressing your symptoms. In the world of motility disorders? This means using alternative routes to hydrate and control nausea & vomiting. Then you address a large intestine not doing its job at all.. your bile is not leaving your body. The term “constipation” does not quite do justice to what happens to your body when it will not move the toxic waste out of your body.
We begin to slowly address each of these issues one at a time. Peeking into the “being chronic” future does not serve us well. Why? Because all of the “peeks” only cause worry, stress, and do nothing to solve our current situation. It only creates anxiety, which then creates more pain in your body it serves no purpose. It only has the effect of almost drowning yourself with each “peek” while “being chronic.” The other spectrum of anxiety is “peeking” backwards. Dwelling on the what was and your lack of “control”—We never truly had control. We can live in peace and in the moment while “being chronic” if we decide to not throw ourselves into a chronic twister of self-torture. Why would I phrase this so dramatically? “being chronic” does not have to define you nor keep you in a constant state of turmoil. If I chose to follow the current back & forth right now about “repeal & replace” it would take my “being chronic” to another level. Every bit if worry or stress creates a “wave” of negativity inside you. Which goes onto to “shake” everyone else around you.
Therefore “being chronic” can be the words on a tag line. But not how you define your life. As a patient/advocate dedicated to create change? We will always remember our “being chronic” hard earned lessons. We will also remember the true detriment it did to our lives when we held its hand,as if it were a part of us, and looked forward and backwards with questions — they were not ours to ask. We learned at a very high price in those moments, not to rob ourselves of our present day gifts with unknown questions & borrowing trouble of things which cannot be changed but can be appreciated as they are today -in this moment.