Part 1 of 2 When a chronically suicidal person is diagnosed with a life-threatening disease only to face Medical Inequality coupled with family mobbing
As the scapegoat member of a narcissistic family dynamic, I have been chronically suicidal since the age of 14. With each of my suicide attempts, some of my family members have exhibited anger toward me while others have been deeply saddened and still others showed no emotion either way. At the age of 60, I was diagnosed with a life-threatening, treatment resistant disease. The reactions of family members to this news have been very disturbing; especially, since I am faced with barriers to medical treatment.
Despite providing documentation of lab results, medical visit notes, and citations from medical journals with statistical analyses of the disease and it’s treatment prognosis along with cost-effectiveness practices of medical providers and insurance companies, my family members have expressed to me either their annoyance because they think I’m crying wolf, their satisfaction that they will finally be rid of me, or the usual apathy about anything that relates to my life. The most frustrating of these is being called a liar.
To be clear, I have no fear of death and would welcome it’s arrival sooner than later. What is upsetting to me is the attitude that my life doesn’t matter; which, is being exhibited by family members and medical practitioners. It’s one thing when one chooses death for themselves. It’s quite another when others choose death for an individual.
I have already addressed in previous articles the medical inequality faced by those who are elderly, disabled, low-income, or on Medicare. I have touched on gender bias among medical practitioners. This article is about the experience of being perceived as ‘the boy who cried wolf’ and the bizarre phenomenon of lifestyle bias as it relates to receiving life-saving medical treatment.
Based upon the results of diagnostic tools, there is no doubt in the minds of medical practitioners nor my family members that I have this disease. The seriousness of this disease is being questioned by family members. The problem seems to be their lack of comprehension of the term ‘life-threatening’. The first aspect of this ignorance is the questioning of the fact that pneumonia, a complication of this disease, could be considered life-threatening. The second aspect is the misconception that ‘life-threatening’ is the same as ‘terminal’.
Let’s look at the second part first—the medical definitions of the two terms:
medical-dictionary.thefreedictionary.com/Terminal+illness: “a progressive disease where death as a consequence of that disease can reasonably be expected within 6 months”.
pallipedia.org/life-threatening-condition: “a condition for which curative treatment may be feasible but can fail.”
What makes my life-threatening condition even more serious is that the curative treatment is being denied. An www.verywellhealth.com/curative-care-2615157
states, “With curative care comes hope. Typically, when a patient receives curative care, it is an indication that there is a belief that the patient may potentially recover, or will at least be able to continue living at a reasonable quality. Curative care may take many different forms, but all have the same goals. Aggressive care is a form of curative care and represents a proactive approach to medical treatment. This care aggressively aims to eliminate medical issues, rather than simply minimizing their impact. A patient that is receiving aggressive care will typically receive medication, have access to technology, undergo surgery, and take any other measures that could be considered effective approaches to treat an illness. When it no longer appears that the patient has a legitimate chance to recover or continue to live with a decent quality of life, doctors may suggest ending aggressive care.”
The doctors are already aware that the www.ncbi.nlm.nih.gov/pmc/articles/PMC2387295 for my diagnosis is poor. What my family fails to acknowledge is that the prognosis of this disease with treatment failure is even worse with a www.sciencedirect.com/topics/medicine-and-dentistry/fusariosis in certain studies.
As for my family members’ misconception regarding the seriousness of pneumonia, the www.ncbi.nlm.nih.gov/pmc/articles/PMC4612842 The mortality rate of disseminated fusariosis when there is physical interstitial lung capillary blockage www.ncbi.nlm.nih.gov/pmc/articles/PMC2176050 even wit