The Psychological Aspects of Post Club Feet

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.

The Truth Is Out There - But Finding It Is Another Matter!

The one seeming constant pertaining to all cases of children born with TEV is the assurances given to the child's parents - "not to worry, it can be corrected." Besides being patently a false statement, both in terms of what the long-term realities are still likely to be for the child, and in terms of the statement prima facie, it is also a very subtle form of distancing. Let's look at the last part of this statement first - "it can be corrected,"referring, of course, to the foot or feet so affected. Not "your child's feet can be corrected," but "it."

Of course, this means "the deformity." By de-personalizing the problem - de-linking it from "your child," it helps both the doctors and the parents see the TEV as an affront, and invasion, an alien artifact that can, and will, be eradicated, and thus, allow "your child" to live a normal life. I would contend it is this de-linking that permits the pediatric medical community to blithely proceed treating TEV as merely a positional deformity that can be "fixed" with no concern for looking more closely, at long-term outcomes, and how they may better inform pediatric treatments for future generations, and at the yet-to-be-explored elements of TEV that suggest there are more than mere positional elements involved with TEV. It is those non-positional questions that, in my view, come in to play later in life, that contribute to increasing pain, joint breakdown, muscle weakness, and a host of biomechanical compensatory mechanics that are playing havoc with many post CF people's lives.

TEV cannot be de-coupled from the child and adult who suffer from it. We live with it's effects every day. Are some luckier? of course. But the percentages that still suffer with the long-term outcomes are significant, and have been seriously disenfranchised by the medical community by the impact of this idea that our feet were "corrected" as children. This is a lie, and a damned lie, at that. Our feet may have been reconfigured, they may have been re-positioned, but they are not "corrected." It is time this term is fully dropped by the pediatric TEV practitioners out there, to stop lying to parents, who, by being so mislead, pass that lie on to the child, who when they do begin to experience problems as an adult, are often made to feel it is their own fault, that they somehow "broke" what the doctors had "corrected." The psychological impact of this practice hurts the child, the parent, and in my view, the entire medical community. The medical community is harmed by this practice because it causes them to have a false sense of power, a badly misguided approach to deepening the knowledge and research and improve the outcomes such children deserve.

The words we use about something matter, and this is the best example of this truism I have yet to find. While I understand the rationale behind the choice of this word, it is a patently false, and thus, harmful basis for continuing its use. Will parents be less convinced to proceed with treatment suggestions? I doubt that very much. Giving parents an honest appraisal of their child's future outlook will permit them to feel better prepared for any eventuality, and that, in turn, will help them better prepare their child for their more possible future options.

That the statement is prima facie false should be obvious, but only if the medical community really starts to do the substantial research required. recent research that shows there are significant changes to the muscles of the lower leg suggest that research needs further exploration. Does this change extend to the upper leg? Does this cellular degradation, grossly manifest in the atrophy seen in nearly all cases of TEV, bear any resemblance to other conditions? This question is especially pertinent in the face of newer knowledge about the chromosomal links to other conditions, and to the presence of TEV in other disorders such as spina bifida, as just one example. Until this research is done, the medical community cannot with any certainty dismiss the idea that TEV is far more than a positional abnormality, and thus, use of the term 'corrected" remains false on its face.

I call upon the medical community to begin this necessary work. Until then, I demand that this much-abused term "corrected" be dropped, that the truth be told - that "we do not with any certainty know what your child's long-term outcome will be. We can only speak of odds, not facts."

It is time to "correct" this problem.