There are many things that lead to a negative or distorted body image. One that I have found very little research on is the effect of deformities on body image. This can include countless medical conditions and complications caused by accidents such as burns, amputations, muscular dystrophy, and spinal conditions. This is an area of which there have been few studies done, yet these conditions greatly effect body image.
What is it Like to Grow Up With Scoliosis
Starting at nine years of age, I started to go for six month scoliosis check-ups at DuPont Children’s Hospital. I had a very slight curve that, due to my sister’s severe scoliosis, was being monitored closely.
At 14, likely due to growth during puberty, my curve increased to 25 degrees, which required a back brace to slow the progression of my curve. I have a lumbar curve, which means that my hips are uneven, my waist is uneven, and I have a rib hump in my back when I lean over. At the time, unless I pointed those out to others, it was difficult to see and could be hidden by clothes. However, I knew that I looked different and was uncomfortable with my less than perfect body.
Like many girls my age, I was already struggling with feeling awkward and not liking my appearance. At that age, and even much earlier, most girls have some struggles with body image. According to statistics from the National Eating Disorders Association, 42% of girls in first through third grade want to be thinner.
Wearing a back brace was tantamount to a death sentence. At 14, I did not want to leave the house. It was physically uncomfortable to wear the brace; a hard plastic shell that started just below my collarbone and went down below my hips. The brace was hard to hide with clothes. My loathing of my body increased, and I refused to leave my house with it on.
At one point, my orthopedic doctor informed my father that they would put me in a body cast if I continued to refuse to wear my brace. I began to comply. My agreement was that I would not wear it to school but I would wear it as soon as I got home and would wear it until I left for school in the morning. This meant that I only left the house for school and that was it. I shut out friends because I was ashamed of how I looked.
One thing that I noticed, when wearing my brace, is that my stomach muscles started to feel mushy. I did not have the toned stomach that I was ‘supposed’ to have. That also led me to become more self-conscious. I started to watch what I ate more and started to restrict my food intake.
The next year, my back brace sentence was lifted and I was excited to be able to rejoin the real world. However, I still was acutely aware of my ‘deformed’ body. I was uncomfortable in a bathing suit and did not want others to see my body. My doctor continued to follow the progression of my curve, and by the time I graduated high school, my curve had not progressed enough to require surgery. However, I asked the doctor if I could have the surgery, so that I would only have a scar but would not have the other deformities. Of course the doctor said no.
My body image disturbance and depression followed me into young adulthood along with alcohol abuse and an eating disorder. Alcohol abuse, eating disorders and depression are caused by many underlying issues. For me, one of the underlying issues was the distorted body image and isolation I experienced during my adolescence and scoliosis.
Many years later, I am an adult that has lumbar curve of over 40 degrees. I have severe degenerative disc disease and have had two disc surgeries. Although I have overcome my eating and alcohol issues, I am still aware of my deformities. When buying a bathing suit or dress, I have to find one that hides my uneven waist or my rib hump. However, these issues no longer lead me to depression and maladaptive coping skills. Through the help of my surgeon, I have found that my body can do more than I realized and I am grateful to feel strong.
Studies on Scoliosis and Body Image are Limited
According to a study in the Journal of Bone and Joint Surgery, “Adolescent idiopathic scoliosis is characterized by a progressive spinal deformity that can cause substantial disability if untreated. It can also cause disfiguring appearance changes that can be difficult to conceal. It negatively impacts psychosocial functioning and may affect adherence to treatment regimens. Low self-esteem, mood disturbances, low self-image, worry over peer relations, suicidal ideation, and alcohol consumption have been reported in patients with this condition” (Auerback JD et al, 2014).
This study utilized the BIDQ-S (body image questionnaire) to study the significance of adolescent idiopathic scoliosis and body image disturbance. Compared to the controls, those with scoliosis had a significantly higher score indicating increased body dissatisfaction.
I am so thankful that there is a lot of support today. There are many peer-led support groups that can give patients and parents a place to receive support. Curvy Girls is an international group that offers support all over the world! My hope is that these groups can help prevent the depression and other issues that come along with scoliosis.
Not only are we dealing with body image, but all of the stress and pain associated with medical appointments, bracing, or surgery. If body image disturbance persists and significant depression exists, the support of a therapist can also be helpful.
I would like to continue to address body image and eating disorders in those with scoliosis. Approximately one in 40 adolescents are affected by scoliosis, so we need to do even more the help support them! I am here to help and will continue to get more involved.
Photo courtesy of April Johnson on flickr