Kindergarten? Relearning How To Live After a Life-Altering Diagnosis #AtoZChallenge
When one learns of the diagnosis a significant chronic illness or injury, oftentimes they must learn the basics of life again. What do I mean, you may ask? Let me try to explain.
In kindergarten learn how to live and function among our peers and in the world as a whole. We learn increased balance and movement, more effective communication skills and how to use words to convey our thoughts appropriately. We learn how to work and play well with others. We learn the importance of self-care through naps. The last one may sound silly but bear with me.
When we are diagnosed with a life-altering illness or injury we are suddenly faced with a number of challenges. First, we need to learn how to live and function again, given our new situation and our new limits on our ability to function as we have become accustomed since we were young children.
We must learn to communicate with both our peers as well as those who are charged with our care. We must learn to do so in a clear, concise, way. While we are trying to learn how to communicate things our mind and body have never fathomed before, we must also learn to do so in an entirely new language. A language whose subtleties often elude those who have studied it for years to become the professional charged with your care. Not only are we, as patients, expected to learn and use it proficiently, but one without so much as a tutorial, Rosetta Stone, or even Cliff Notes. Further, our family and friends who participate in our care are also required to learn it, and use effectively use it to help us describe our symptoms that frequently even our physicians fail to understand fully.
We must become experts at pleasing our caregivers in order to achieve an appropriate diagnosis, treatment, and care. While we may become so frustrated with our inability to communicate the symptoms that we don’t truly understand how to describe, we may become so extremely frustrated that we feel like throwing a tantrum. However, we learned in kindergarten that this behavior is not appropriate nor acceptable. Pleasing our caregivers can apply to submitting to treatments you may not want in order to be able to rule out the provisional diagnosis so that you can get back on track towards finding the proper diagnosis.
We must deal with the very real loss of many of our former friends who fail to have the capability to understand or deal with our current medical situation. We must further learn how to make new friends who not only accept us as we are but often have a firsthand knowledge of our predicament. We must learn how to deal with the frustration, anger, denial, and flood of other negative emotions through constructive means. These may consist of talk therapy, biofeedback, stress management, or even such things as art or music therapies. This consists of learning a whole new way of life. A life we learned how to live when we were young children. Now, it seems, very little of that pertains to your new life.
All of the things we once took for granted as normal from a very young age, suddenly seem to have little bearing in our lives. Suddenly we find ourselves struggling both emotionally and physically to function from one day to the next. Then as if the injury isn’t enough, we are further insulted by being unprepared to manage our health in a system that requires us to be our own best advocate by doing our own research. This is one of the primary reasons I am so passionate about patient self-advocacy and empowerment.
Do you have a story you’d like to share about how you adapted to a new lifestyle after a life altering diagnosis? Please let us know in the comments below.