In order to understand the entire psyche of the Scoliosis Patient, an examination of the culture surrounding this disfiguring condition as it has developed through time is in order.
Historically, societal intolerance for people with the curved spines of Scoliosis has created a psychological outlook inexplicitly bound up primarily with the condition's deforming aspects--while neglecting the serious internal health problems crooked spines produce that can even be fatal.
Literature and film abound with examples of the reviling nature of the upper back "hump" and the distorted bodies and walking gaits that curved spines produce. Everyone is familiar with some version of "The Hunchback of Notre Dame" with its titled Scoliosis victim pilloried and otherwise vilified as describably the ugliest creature that ever lived. Even more realistic films such as the critically-acclaimed "Europa, Europa" has a striking scene with a crooked lonely woman galumphing hideously after the only person to befriend her--a young Jewish outcast in World War II Poland--when he is rounded up. Then there is the small hero in "The Secret Garden," who fearfully took to bed as a cripple just in dread of the thought that he might develop a scoliosis hump like his father's.
While modern society has made great strides in separating frightful-looking medical conditions like Scoliosis from evil spirits, religious condemnation, and the like, it will never entirely be able to discard its prejudices in the face of seeing crooked bodies that cannot move normally. The unfortunate fact is that until Scoliosis can be effectively prevented and/or treated in a relatively unobtrusive and more successful way, judgmental behaviors will remain. This is particularly true because the great majority of cases of curved spines are attributed to Adolescent Idiopathic Scoliosis, making the cause of 80-85% of the cases unknown. With nearly 10% of the teenage population found to have at least small degrees of Scoliosis, and most high schools of any size having at least one if not more students with severe curvatures needing extensive surgery, the threat of Scoliosis becomes real and unpredictable to others.
Some people in the general population can only handle such fear for themselves and/or their children with avoidance of the victims of Scoliosis, granting them only pariah status. It is difficult enough for Scoliosis victims to have to fight societal ignorance throughout all stages of life, but worse is the fact that they are usually discovered to have shockingly distorted bodies right on the cusp of adolescence, a stage of life already fraught with identity crises and insecurities. Particularly because of the fragility of time in their lives when most Scoliosis patients are first diagnosed, they can develop unhelpful, defensive coping strategies that become a part of their permanent behaviors. These aberrant behaviors have been defined by the author as Scoliosis Overcompensation Syndrome.
Scoliosis Overcompensation Syndrome (SOS) is often seen most severely in Adult Scoliosis Patients who had spinal fusions for Scoliosis as adolescents, particularly in the early years (1960s and 1970s) when the emotional consequences of such a deforming condition and its treatment was not deemed important to recovery. It is caused primarily by a strength-from-adversity outlook on life, developed as a result of patients having to face what are now recognized as barbaric Scoliosis treatments such as weeks at a time in halo-femural traction preceding surgery. (In halo-femoral traction, the bed-bound patient had his or her back stretched with ever-increasing traction weights connected to screws that were inserted in the knees and skull.)
These treatments often resulted in adolescents feeling abandoned and powerless for months at a time in painful situations in locations isolated from family and friends. Youngsters had to learn to be submissive, compliant, and suppress their emotions in order to avoid experiencing what we might today regard as abuse in these settings, with punishments such as denial of pain injections or even basic hygienal aid if they cried. SOS is also accompanied by patients' rejections of the memories of the physical deformities that accompanied their spinal curvatures, and a mistaken belief that the spinal fusions they had that provided cosmetic correction "cured" their conditons. Decades ago, this attitude was reinforced by Scoliosis doctors, who often told their post-surgery spinal fusion patients that, upon recovery, they would have absolutely no limits on their activities.
Many SOS patients recall that they developed great strengths of character during the trying times of their Scoliosis treatments at ages 14, 15, or 16 that paved the way for them to become highly motivated, successful adults. They often express that they learned "what was important in life," which was not popularity, material possessions, looks, or the like. Thus, they often came out of their travails seeming more mature and focussed than others their ages, traits that were thought to be societal pluses. However, they found that they no longer fit in with their peers. Unfortunately, it also meant that some Scoliosis patients never went through the normal growing experiences of adolescence that produce more well-rounded adult individuals.
What most Adult Scoliosis patients do not talk about much are the feelings they had when their bodies suddenly started twisting in frightening ways at the brink of adolescence, a most crucial time in their psycho-social development. Since most were diagnosed with Adolescent Idiopathic Scoliosis (AIS is Scoliosis of unknown cause), the acquisition of this deformity that came out of nowhere was often a great burden to bear, especially as they had to watch their spinal curvatures worsen right before their eyes. It seemed to them--and to their parents and friends as well--that they were normal kids one day, and misshapen and even monstrous in appearance the next. The first line of treatment--clumsy bracing contraptions with protruding neck supports and pokey metal rods, which had to be worn to school under clothing many sizes too big--often just added to their self-consciousnesses. Ironically, there was no accompanying pain to the spinal deformity, as is typical in AIS. (Pain is usually only a component of Scoliosis in adults.)
With a lack of psychological counselling, these adolescents who had spinal fusions to correct their curvatures were able to go into complete denial about their "former" deformities. Even though the surgical correction could not (and still cannot) produce perfectly straight spines, it greatly lessened the imbalances in shoulders, waists, and hips. Thus, many were able to dress so that they could "pretend" that they never had Scoliosis, and some went to great lengths to hide their remaining crookedness from others. Scoliosis doctors, again, fostered this approach by complimenting their patients on their cosmetic improvements and encouraging them to feel they were "all better" and need never think about limiting themselves in terms of their activities and future plans. Some young women even had reconstructive breast surgery to reshape growing adolescent breasts that had been crushed by months in bulky plaster body casts.
Adult Scoliosis Patients who were surgically treated as Adolescents, especially from the early days of spinal fusions when less efficacious treatments were performed, often display multiple symptoms of Scoliosis Overcompensation
Syndrome, which can include:
Counselling by psychologists or social workers familiar with medical problems, disabilities, and pain control can help Scoliosis Patients with SOS learn to express their feelings better and develop more productive ways in dealing with their families, employers, and medical professionals. They can also aid in stress and pain management, teaching patients behavioral modifications that can allow them to pace their activities and workloads. Patients can also be instructed in how to listen to their bodies when they need to conserve strength and energy to prevent or alleviate long-term physical complications of Adolescent Idiopathic Scoliosis.
Spinal surgeons (or the hospitals in which they have privileges) often can recommend such medical professionals to work with their patients in ameliorating the effects of Scoliosis Overcompensation Syndrome. These professionals can also help SOS patients prepare for any medical procedures that may become necessary in the future with a more positive attitude to ensure better success.
The information in this article is based on anecdotal reports of Adult Scoliosis Patients, particularly those currently in their 40s and 50s, who experienced spinal fusions for Scoliosis when they were adolescents. Although, based on their accounts, it is clear that Scoliosis Overcompensation Syndrome (as defined by the author) exists in some form and in many patients, there is little known about its incidence and severity in the Adult Scoliosis community. There is a great need for more extensive study and scientific documentation of SOS in order to be able to go forward and provide better help for these patients.
Written by Elizabeth Mina