The Five Stages of Loss in Chronic Illness

Hello All,

When someone, or someone we love, discovers they have a disease or medical condition for which there is no cure, and for most part no treatments and that they will be this way for the rest of their lives and probably get worse as time passes and may even die from it; they most likely will endure a series of several stages of mental, emotional and psychological experiences. The realities of such a situation create feelings, fears and questions, which are quite common and expected under such circumstances.

The questions like “Why me?” or “What did I do to deserve this?” easily come to mind. “There must be a mistake,”  “There has to be a cure,”  “How bad will I get?” and “How can I get through this?”, will surely follow.

According to Wikipedia, the Kübler-Ross mode, also known as “the five stages of grief, is the series of emotional stages that someone experiences when faced with impending death or other extreme, awful fate. The five stages are denial, anger, bargaining, depression and acceptance... ...these stages are not meant to be a complete list of all possible emotions that could be felt, and, they can occur in any order. Her hypothesis holds that not everyone who experiences a life-threatening or life-altering event feels all five of the responses, as reactions to personal losses of any kind are as unique as the person experiencing them.”

Kübler-Ross, who worked with dying individuals, originally developed her five-stage model based on observations of those suffering from illnesses, which were terminal. Over time she believed this theory also applied to those suffering any form of devastating personal loss or upon learning the diagnosis of a chronic illness or disease...."

http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

After Kübler-Ross wrote her book, “On Death and Dying,” others have written on this subject and present a variation of the original five stages. Chronic illnesses present with different symptoms and characteristics but they are the same in that each individual experiences denial, anger, fear, hope and acceptance. Many other feelings may be a part of the cycle of stages. There is no special order that someone goes through these when someone is diagnosed with a chronic illness and it is not uncommon to go back and forth through them. This can happen as the health conditions worsen or improve.

It is suggested that no matter what stage a person may be in, they need to go with it. That is probably where one needs to be at that given moment. It is wise not to try to push it or try to hurry into the next stage. Let it naturally happen.

http://fibrofighter.tripod.com/17stages.htm

For those of us with various forms of Periodic Paralysis, the above information applies. We do first face denial. Periodic Paralysis is a very cruel and progressive illness for many of us. We experience the paralysis and muscle weakness and feel the pain associated with it. We read and study about it. We recognize what is happening. But, we do not want to believe it. We deny it.

 
As we lose our muscle strength, the ability to walk or to eat what we want, to do what we want or need to, lose our jobs and careers, the ability to drive, our independence and possibly even family members who do not understand, we face great loss. We become angry and sad.

While in paralysis we may not be able to move, see or speak. We have arrhythmia, fluctuating heart rate, fluctuating blood pressure, choking, and problems with swallowing. We can actually die during an episode from the arrhythmia, or respiratory or cardiac arrest. We became very fearful.

When we learn there are medications that may help us; diets that can reduce the amount and severity of our paralytic attacks and that avoiding known triggers will improve our daily life; we become hopeful.

 
Learning as much information we can about Periodic Paralysis; changing our diet, avoiding the triggers, making natural lifestyle changes; creating adaptations in how we do things; joining support groups and seeking out therapy or counseling and learning relaxation techniques can bring us to an acceptance of being in control.

As things change and our muscle weakness progresses, we suddenly develop more paralytic attacks, we must deal with an infection or the side effects of the medication we are given, more breathing issues develop or we become unable to do yet another simple daily activity, a new symptom begins or another grandchild ignores us; it is easy to slip back into a sense of loss, fear, depression or anger.

 
When this happens, communicating with friends in a support group who understand or a therapist can be the best way to slip back into hope and acceptance.

We must never give up our struggle and we must continue to have hope that there may be a new medication or a new form of treatment that may be developed for treating the dreadful effects of Periodic Paralysis. We must continue the fight for our self, our children, our grandchildren and our great-grandchildren. We must continue to bring awareness of Periodic Paralysis to our families and friends. We need to teach the medical professionals in our lives about it for better and faster recognition, diagnosis and treatment.

However, no matter which stage we may be at this moment; denial, anger, fear, sadness, depression, hope or acceptance; it is best to not try to push it or try to hurry into the next stage or feel guilty about it. Let it naturally happen. It is acceptable to feel sadness, fear or anger at each new step or loss. We each have a right to our beliefs, feelings and thoughts at any given moment.

We at the Periodic Paralysis Network are here for each and every one of you no  matter which stage you may be experiencing.

Until later…