The physical manifestations of post-club feet are well-known to most clubbys. But the psychological aspects are sometimes a bit harder to sort out. There are the elements related to the chronic pain, of course, and to the aspects of living with a handicap in general. But there are often other, better-hidden elements that might take years to erupt, or may be so entwined with other parts of one's life that they are harder to discern and address when they do make themselves known.
Like most children with a visible disability, clubbys are often the target of bullying and disparaging comments while in school, and outside school among their peers. These issues are getting better coverage in the press lately, but mostly in their generic aspects, i. e., any bullying of any child. While this is a good start, the impact of these attacks on a child with a disability is often a deeper and more insidious harm, and may need addressing by professionals who have taken the time to truly focus on such children.
Another psychological impact is that of the family of such a child. While many families are outwardly quite supportive and active in advocating for their disabled child, there are many behaviors that may be left unaddressed that impact their own child. There are special burdens, both fiscal and social, placed on such parents, and small resentments may end up being expressed in ways the child can poorly process, but does associate with themselves and their disability. Some of this may take many years before its impact is known even to the child, by then an adult themselves.
Even worse are parents who cannot make the necessary leap to seeing their child as worthy of the extra efforts and love most handicapped children need, who unconsciously or consciously reject their own child, or make no effort to hide their resentments of the amount of time and money and extra attention their child needs. The damage such parents can do is significant, and has great implications for future psychological dysfunction in the adult dealing with post-club feet.
There are of course many things that can impact any disabled person psychologically, such as the failures of the medical establishment for providing answers to chronic pain and continual progressive deterioration; the attitudes the disabled face from government bureaucracies; the roadblocks to mobility and access to the things most people take for granted; and the list goes on. For any person with a disability, these are common-place realities, and quite often, they also face disbelief on the part of the able-bodied as to the impacts of these roadblocks.
From feeling we may have "broken" what the doctors supposedly "corrected", to worrying about how we will meet the demands of aging with limited resources, while facing the very real probability we will need even more medical care than the typical "normal" person, the psychological impacts of Post CF are very real, and we need to find ways to address them, just as we seek ways to address the physical and social aspects of our certain futures. To ignore these aspects of life as a clubby is to sweep reality under the rug - one day, we are going to have to deal with what we swept under, before it sweeps us under first.
Like most children with a visible disability, clubbys are often the target of bullying and disparaging comments while in school, and outside school among their peers. These issues are getting better coverage in the press lately, but mostly in their generic aspects, i. e., any bullying of any child. While this is a good start, the impact of these attacks on a child with a disability is often a deeper and more insidious harm, and may need addressing by professionals who have taken the time to truly focus on such children.
Another psychological impact is that of the family of such a child. While many families are outwardly quite supportive and active in advocating for their disabled child, there are many behaviors that may be left unaddressed that impact their own child. There are special burdens, both fiscal and social, placed on such parents, and small resentments may end up being expressed in ways the child can poorly process, but does associate with themselves and their disability. Some of this may take many years before its impact is known even to the child, by then an adult themselves.
Even worse are parents who cannot make the necessary leap to seeing their child as worthy of the extra efforts and love most handicapped children need, who unconsciously or consciously reject their own child, or make no effort to hide their resentments of the amount of time and money and extra attention their child needs. The damage such parents can do is significant, and has great implications for future psychological dysfunction in the adult dealing with post-club feet.
There are of course many things that can impact any disabled person psychologically, such as the failures of the medical establishment for providing answers to chronic pain and continual progressive deterioration; the attitudes the disabled face from government bureaucracies; the roadblocks to mobility and access to the things most people take for granted; and the list goes on. For any person with a disability, these are common-place realities, and quite often, they also face disbelief on the part of the able-bodied as to the impacts of these roadblocks.
From feeling we may have "broken" what the doctors supposedly "corrected", to worrying about how we will meet the demands of aging with limited resources, while facing the very real probability we will need even more medical care than the typical "normal" person, the psychological impacts of Post CF are very real, and we need to find ways to address them, just as we seek ways to address the physical and social aspects of our certain futures. To ignore these aspects of life as a clubby is to sweep reality under the rug - one day, we are going to have to deal with what we swept under, before it sweeps us under first.
Great Blog post Willy! I had very little preparation from the medical community when it came to aging and the effects of CF on joint/muscle/tendon breakdown. Hopefully with more of us raising awareness on this (for the most part) unspoken (hidden) condition we will change that, and in turn change our lives as well. :))
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