Own the disease and your reaction. Do not become the caretaker of others who swoon or swing into inappropriate and certainly not helpful reactions over your news. This is your life. This is your trauma and trek; own it. This is a time in your life where the most frightening of all scenarios dropped on your doorstep. AND FOR THE MOMENT YOU ARE NOT IN CONTROL.
Understand the diagnosis and your morbid imagination trying to rip the helm from your hands. You have barely set sail and your disease is not, and shall not be you. Demand information and experience your feelings but do not let them define you- best anti-anxiety medicine in the work.
Muster up an army of at least one other who forms an allegiance with you to conquer ignorance and face fear. There will be personal issues needing attendance as well as the secretarial assistance needed to stay on top of all the tests, appointments their results and inevitable questions they will engender. . I encourage either a small hand held recording device or a trusted friend or family member who acts as a scribe to objectively write what was said, not felt, what needs remembering, not fearing.
Avoid blind trust. The relationship you want most, initially, is with the truth; the facts and figures expressed in as much detail in context and relationship to your diagnosis that help you understand what is your disease, what does that mean, what can be done and what decisions are next.
Never surrender autonomy.
Your scribe is a partner there to assist you so that through the frenzied fog of anxiety so that the light of your soul and informed hope do not merely flicker, but shine.
Author Jessie Gruyman, president of the Center for the Advancement of Health and survivor of many a life threatening diagnosis wrote, “After shock: What To Do When The Doctor Gives You-Or Someone You Love- A devastating Diagnosis. Read it.
- The anxiety mitigating impact alone on a now engaged and in control patient is God sent. The literature suggests the diminishing stress gained though being engaged may diminish overall suffering and positively impact quality of life. The more aware and in tune patient will bring in any new signs and symptoms to their team with greater precision and speed and that is always good.
- Patient and health care team are enmeshed in an intricate and not always predictable dance. Suggesting the patient should have no choreography or record of motions, moments, and meanings that give the dance its greater therapeutic meaning borders on cruelty. Listen, learn, engage, and if you cannot understand, bring in that specially selected scribe to help
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