There are many losses to grieve in life including the quality of one’s life. In her groundbreaking 1969 book, “On Death and Dying.” Dr. Elizabeth Kubler-Ross describes the five stages of grief that patients experience as they approach physical death. The Red Skin Syndrome (RSS) patients experience the same five stages of grief as their condition worsens and their lives become unbearable. RSS patients, despite starting with a benign disorder, eventually develop a severe malady and endure all the inevitable phases that the author describes. Their suffering is completely unnecessary and their grief is totally avoidable.
Only one who is in pain really senses nothing but himself
The five phases are:
In the first phase of grief RSS patients try adjusting to the idea of a severely altered lives. Despite being told that the disease is chronic and for life they really don’t accept it. They entertain fantasies of things somehow working out. They see hidden glimmers of hope. This is the phase when they are most susceptible to reaching out to any and all who will listen.
Anger is expressed in many different ways. Anger can be directed at God or the Universe and expressed in comments like, “Why am I cursed?” “Why can’t anything ever work out for me?” Anger can be directed toward other people who don’t understand or agree with their anger. Anger can be directed at the Internet, health gurus, or the medical profession. Anyone or anything can become victims of their rage because no matter where the patients turn they continue to get worse and their anger mounts.
Bargaining often accompanies denial. RSS patients have the vague hope that through negotiation they can make this awful thing go away. They bargain with The Powers on High promising to be a better person, giving up favorite foods and pleasures and often going the route of the mystic. During this stage they may take up a new interest in astrology, tarot cards or any type of black magic that promises to alleviate their severe discomfort. They search for a wide array of alternative medicines because traditional professional medical care has failed them.
Depression surfaces in varying forms just like anger. Patients will stay in bed all day, will not go to work, will not socialize and continually exist on the verge of tears if not outright crying. There is an overarching feeling of hopelessness and their sleep is severely impaired.
In this phase RSS patients accept their fate and either continue going from doctor to doctor or they may stop seeking medical care all together. They are making peace with their problem.
The traditional professional medical community has failed RSS patients and facilitated their grief by being unwilling to acknowledge that Red Skin Syndrome is completely curable through withdrawal from steroids. These patients need not grieve.