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The Child is Angry/The Parents Feel Guilty-Chronic Illness

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ReAdSaLoT On September 23, 2019




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#1New Post! Mar 03, 2009 @ 01:10:56
Since this was brought to my attention earlier, I thought I'd just share a few points. When I was two my health began to deteriorate very quickly; my parents were about to lose their minds. Medical advances were happening, but not like they are today. In the beginning it was thought that I just had eczema; I don't. Time went on and I was ill constantly with bronchitis, pneumonia, esphophageal problems, allegeries, etc.,etc. Hard as they tried , my parents could not find a doctor to help me. Apparently, my tests were normal, but they knew that an otherwise happy child from a loving family had a physical not mental ailment. Until the day she died, my mother apologized for bringing me into this world and asked if I was sorry that I was ever born. Far from it; I've had a wonderful life, this is what I have, not who I am. Children don't see their parents cry at night and pray that their child gets well. They also don't see their parent's guilt. I did a little research and this is some information that I got from the Health Care Industry by Bernadette Mazurek Melnyk, Nancy-Fischbeck Feinstein, Zendi Moldenhouer, and Leigh Small 200l.
National estimates of the prevalence of childhood chronic illness (i.e., a prolonged illness or disability that interferes with daily functioning) indicate that approximately 31% of children under the age of 18 have one or more chronic illneses. In contrast to acute illness in which parents have hope for a "cure", the main theme in chronic illness is "care". Despite the knowledge gained from a wealth of studies that have identified the multiple stressors and needs of children, evidence-based srategies to enhance coping outcomes over time in this population are limited.

Stressors experienced by parents of children who are chronically ill usually are multiple and ongoing. Although these stressors vary over time, they are categorized as such (1) at the time of diagnosis (2)
during developmental transitions (3)that are related to ongoing healthcare needs of their child, (4) as their child experiences ongoing exacerbations and hospitalizations.
Parents frequently find themselves unable to deal with their guilt and go through many emotional upheavals often misunderstood by the child. Parents experience a loss of a formerly taken for granted world and fear the potential loss of their child. Being at a loss for knowledge they find being able to care for and protect their child to be extremely stressful. Parents will feel like failures, and lash out in unexpected ways.
While disclosure of the diagnosis gives them some sort of closure, they still are at a loss for how they can cope, or help their child cope.
Parents fear telling other people about their child's condition, also a part of the guilt. They go through shock, disbelief, denial and anger. Additional responses may also be despair, depression, frustration, and confusion. Feelings of guilt, decreased self worth and lack of confidence also are common responses. Parents don't mean to do harm, they lack knowledge and feel helpless.
I was finally diagnosed when I was fourteen and it was a relief to know that I was not crazy. My mother and father sobbed with joy and fear. Today I live a full life; I'm 53, have been married for 30 yrs. and am a mother. I've enjoyed college, graduate school and a long teaching career. I don't care to name my illness, it's personal and I do my own thing to help others who have it. If you were to see me, you would never guess that I was anything but totally healthy.
I am no longer able to maintain a fulltime job, so I work from my home, keeping hours which suit my problems. With this I freelance write( this is the type of writing that pays the bills, not my poetry), I have a small card business which I am slowly discontinuing, I see patients for couseling when I choose to work, and I sing in clubs in the city whenever I can. My friends know what's wrong with me and I have a great deal of support. If my parents were still alive, I would ask them to stop blaming themselves. This illness is genetic, but there were no tests for it, it's an "orphan disease. " Luckily, my son could be tested and he is healthy. There may never be a cure, but there have been many advances and I am grateful for that. I'm no hero, I cry plenty, I just find that keeping busy is the best medicine for me.
I'm writing this for any parent trying to cope, a dear friend, and myself. My dream is for a world where everyone is healthy; without your health, nothing else matters.
squirt_aka_casey On April 21, 2018
BCW-Ant Destroyer





That place, Ohio
#2New Post! Mar 03, 2009 @ 01:22:31
Well, I hope that you mom got to see that she was the light of your life and her guilt was lifted by you.

It's very difficult to deal with children who have chronic diseases. I've been blessed with two very healthy children, but know several mothers and fathers who have to deal with it everyday. Thank you for sharing all of this, because it is important to know that you cannot be the guilt bearer of somethings that there can be nothing done for it.
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