Posted by so on June 12, 2005, at 18:38:04
In reply to Lou's response to Dinah's post-:B » Dinah, posted by Lou Pilder on June 12, 2005, at 8:31:39
Lou,
I want to acknowledge that your interest in this matter led me to independently explore information about lupus and the prognosis for people suffering the disease. I learned that the mortality rate for people diagnosed with Lupus has decreased in part because a larger number of people are now diagnosed, due to the recently aquired ability to diagnose less severe forms of the disease. For those suffering more severe forms, the mortality rate has decreased because the disease is sometimes controllable, but is not yet considered curable. But for a certain group of people with the disease, the prognosis for long-term survival remains poor. I believe it is compassionate to recognize that some people must face the expectaton of death, either their own or that of loved ones. Though I hold no opinion about who should say what to the person whose personal experience led to this current discussion, I find that compassion, or "suffering with" a person can involve sharing their burden with a solemn realization of the inevitable, along with perhaps expressing a hope, albeit sometimes only to become adjusted to the futility of hope, for more time to live.
I don't concur with an opinion expressed elsewhere that anyone "earns" a right to discuss difficult aspects of a disease by having the disease, or by having a family member who has the disease. If that is so, we must all face death, so we have all "earned" the right to face the inevitability of death.
Nor do I concur with an opinion that holds only "positive" information about a disease is compassionate in an educational forum. Part of the difficulty of facing a potentially fatal disease is confronting the inevitability of death in some cases.
Having reviewed this thread about how discussion of a sometimes fatal autoimmune disorder can be compassionately discussed at this forum, I have begun to wonder why so few, if any, people suffering from aquired immune difficiency syndrome have presented here for support and education related to the mental difficulties associated with that disease. I am familiar with the battlefield comfort offered in the phrase "everything's going to be alright" spoken to a dying person, but for those with more time to contemplate the reality and inevitability of death, I wonder if an assertion that "everything is going to be alright" is sometimes insufficient to support their needs in the face of likely death.
Further, because these diseases are increasingly controllable, recognition of the risks the diseases pose can assist those suffering from or supporting those with the disease in making intelligent either/or choices about what activities might be worthwhile or safe for them to pursue.
For my part, as my time on Earth becomes shorter, I realize that avoidance of discussion of death might serve those with more time to avoid the topic than it does those of us whose time is approaching. Among those I know who have faced death at an old age or by disease, I recall that they broached the topic of death often as a way of preparing those who have more time to live for the moment when they must confront the departure of a loved one.
poster:so
thread:510946
URL: http://www.dr-bob.org/babble/admin/20050530/msgs/511685.html