Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Back in 2012 when I was early into diagnosis and treatment of MG and wondering if I would ever get a reasonable level of functionality back, I was told that one should treat a chronic disease like MG the same way one treats a loss or death. One view of this process is the 5 stages of grief steps. MG chronically changes most of our lives for the worst and the steps we go through include:
From Wikipedia
Denial As the reality of loss is hard to face, one of the first reactions to follow the loss is Denial. What this means is that the person is trying to shut out the reality or magnitude of his/her situation, and begins to develop a false, preferable reality.
Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
Bargaining "I'll do anything for a few more years."; "I will give my life savings if"
The third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live.
Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time" People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?" when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it is a matter of life or death.
Depression "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the grieving person begins to understand the certainty of death. Much like the existential concept of The Void, the idea of living becomes pointless. Things begin to lose meaning to the griever. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and sullen. This process allows the grieving person to disconnect from things of love and affection, possibly in an attempt to avoid further trauma. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It is natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Oftentimes, this is the ideal path to take, to find closure and make their ways to the fifth step,
Acceptance.
Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begin to come to terms with their mortality or inevitable future, or that of a loved one, or other tragic event. This stage varies according to the person's situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. This typically comes with a calm, retrospective view for the individual, and a stable mindset.
****
When those of us who have haunted this discussion group for a few years see newly diagnosed folks come here, scared, shocked, and trying to figure out what their future will be, we do see evolution in many that does seem to follow the 5 steps listed above.
I wrote often about this at my blog including my attempts to work through it at 6 months when the future seemed tenable but not desirable and I was contemplating suicide. I didn't really seriously consider it as it would have been selfish when my wife was simultaneously in a fight for her life with stage 4 cancer (she got through it too).
My own view of the 5 stages and my decision to persist with an MG altered life:
http://riverroadrambler.blogspot.com/2012/11/skipping-through-stages-of-grief.html
My many comments and progress reports in 2012,2013 leading to full remission from MG a 15 months ago that is still holding. If there is any value in these, it is that, for whatever reason, the path I took through MG treatment has put me in full remission and was guided by the World's Number 1 hospital system -- The Mayo Clinic (I spent most of my life working there in medical research and medical systems so am rather pleased with US News and World Reports 2014 #1 ranking!)
https://www.google.com/search?q=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&oq=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&aqs=chrome..69i57.32055j0j4&sourceid=chrome&es_sm=122&ie=UTF-8#q=myasthenia+gravis+site:riverroadrambler.blogspot.com
Good Luck
From Wikipedia
Denial As the reality of loss is hard to face, one of the first reactions to follow the loss is Denial. What this means is that the person is trying to shut out the reality or magnitude of his/her situation, and begins to develop a false, preferable reality.
Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
Bargaining "I'll do anything for a few more years."; "I will give my life savings if"
The third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live.
Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time" People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?" when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it is a matter of life or death.
Depression "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the grieving person begins to understand the certainty of death. Much like the existential concept of The Void, the idea of living becomes pointless. Things begin to lose meaning to the griever. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and sullen. This process allows the grieving person to disconnect from things of love and affection, possibly in an attempt to avoid further trauma. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It is natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Oftentimes, this is the ideal path to take, to find closure and make their ways to the fifth step,
Acceptance.
Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begin to come to terms with their mortality or inevitable future, or that of a loved one, or other tragic event. This stage varies according to the person's situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. This typically comes with a calm, retrospective view for the individual, and a stable mindset.
****
When those of us who have haunted this discussion group for a few years see newly diagnosed folks come here, scared, shocked, and trying to figure out what their future will be, we do see evolution in many that does seem to follow the 5 steps listed above.
I wrote often about this at my blog including my attempts to work through it at 6 months when the future seemed tenable but not desirable and I was contemplating suicide. I didn't really seriously consider it as it would have been selfish when my wife was simultaneously in a fight for her life with stage 4 cancer (she got through it too).
My own view of the 5 stages and my decision to persist with an MG altered life:
http://riverroadrambler.blogspot.com/2012/11/skipping-through-stages-of-grief.html
My many comments and progress reports in 2012,2013 leading to full remission from MG a 15 months ago that is still holding. If there is any value in these, it is that, for whatever reason, the path I took through MG treatment has put me in full remission and was guided by the World's Number 1 hospital system -- The Mayo Clinic (I spent most of my life working there in medical research and medical systems so am rather pleased with US News and World Reports 2014 #1 ranking!)
https://www.google.com/search?q=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&oq=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&aqs=chrome..69i57.32055j0j4&sourceid=chrome&es_sm=122&ie=UTF-8#q=myasthenia+gravis+site:riverroadrambler.blogspot.com
Good Luck
Thanks for words of encouragement and tips to get throught.
Love and hugs. XOXO