PARENTS AND TREATMENT

The adolescent’s ability to follow whatever treatment is prescribed depends on the attitudes of her parents. In general, children look to their parents to help figure out how they feel about new situations. If parents are positive and encouraging about treatments, the child is more likely to feel positive about the treatment and comply with the directions from their doctor.

Mothers who feel guilty because they feel it is their fault that their daughters have scoliosis often communicate this feeling nonverbally through body language or unspoken attitudes. The message to the child is that she does not need to wear this brace so much because it is so uncomfortable or so embarrassing. This nonverbal communication may often be contradictory to the verbal statements which support, "doing what the doctor tells you." The child who have trouble adapting to the brace can find unspoken support from their parents that she does not need to wear it.

A daughter’s attitude toward her brace is usually identical to the parents’ attitude. So if your daughter is being treated by bracing and you want her to wear her brace, be positive about it and encourage her.

Some women speak of how other members of their family dealt with their scoliosis:

My brother ignored it; my grandparents would talk about it with me. It was not until my brother read an extended memoir piece about my scoliosis (last year) that he admitted that he had chosen to ignore it and treat me with disdain when I would complain of pain. Now he listens and is supportive and accepting.

My family was completely supportive. I think it would be very hard if you did not have the emotional support of family. This is a life-changing event and you cannot face it alone. Just physically you need help at first. Recovery is slow, depending on the severity of your curve/s, because the operation is so drastic. For me emotional support was critical.

Coping with any physical disability is difficult, but it can be easier to achieve if the person has a supportive network of family, friends, and doctors. The psychological implications of being a woman with scoliosis depend on both how she is physically affected and emotionally affected. A physical condition like scoliosis can make a person feel that their self is injured as well. So a person with scoliosis experiences both physical and psychological pain.

Because adolescent idiopathic scoliosis is found mostly in females, and it sometimes runs in the family, it is important to look at the relationships between mothers and daughters in this context. Mothers who deal with the physical and emotional hurt of scoliosis are at risk to be hurt again through their children because they care about their children and identify with them. They are often anxious about their daughters developing scoliosis.

Having a child with scoliosis can be psychologically painful on two levels: the mother relives her own feelings and experiences with scoliosis as she helps her daughter, and she also may feel guilty about "giving" scoliosis to her daughter, which can make her feel like she is not a good mother. Sometimes a parent must take care of two or three daughters with scoliosis. When one child is diagnosed in a family, it is usual to examine and x-ray the other children.

One mother who had scoliosis herself had two daughters with scoliosis, and talked about her profound sense of sadness and disappointment in herself:

"I try to be such a good mother, but I can’t fix this for them. In fact, it is my fault."

Daughters have an understanding of how their mothers are responding to the situation, and it affects how the girls themselves respond. One adolescent reports,

"Every time my mother looks at me she cries; she doesn’t want me to have what she has".

This situation makes it more difficult for the daughter to cope with her scoliosis in a healthy way. When the mother is suffering because she is upset, the child is left to cope on her own and with the responsibility of trying to comfort her mother.

A girl who shares the diagnosis of scoliosis with her mother identifies with her mother but often also feels angry or resentful, wondering, "why did I get it? You could have given it to my sister instead." Strong feelings of resentment usually fade because the child needs the parent’s support, and also fears that she will be a source of sadness and disappointment to her mother since most children have strong needs to help their parents feel that they are good parents. One girl said,

"My mother understands about this because she has it also. "

Another said with some pride,

"All the women in my family have it."

her message was, "this is a way that I can identify with my family, see the similarities between myself and them, and feel that I am one of them. " (Fostenzer & Roye, 1989)

Mothers who have made a healthy adaptation to their condition can provide their daughters with a working model of how to adapt. The interaction between a daughter and her mother impacts how the daughter will be treated and how much she complies with the treatment. Mothers who have had scoliosis use their experiences as part of the mechanism for making decisions regarding their daughters. In one study, Mothers with scoliosis were especially interested in their daughters having surgery, because they saw bracing as ambiguous and surgery as a more concrete solution (Fostenzer & Roye, 1989).

A few women write of their experience with scoliosis, and how their parents reacted. (from the scoliosis survey posted on the scoliosis mailing list)

My mother used my scoliosis as a topic of conversation wherever she went. I'm not sure if it was to elicit sympathy or not, I always got that impression though. I begged her to keep my medical history private and she never complied with my wishes. It was a very difficult time growing up in that arena because teenagers are so private to begin with. It was terribly violating for her to do this and it took an aspect of control away from me. She was my only family member whom with which I had contact during this time.

My mother tried to be understanding & felt really bad about all I was going through. But being an adolescent, I rejected most of her care & remained very independent. Many times when she visited the hospital, I would tell her to go home--I felt it important to rely upon myself & I suppose was a little angry at her, too (through no fault of her own). Also, my mother did have a job as the sole breadwinner of the family at that time, & I knew that the 2-hour trip to the hospital was a real burden for her. So, while initially she planned to visit at least every other day, I wouldn't let her. I think I hurt her feelings, but she was relieved, too.

EMOTIONAL RESPONSE TO SCOLIOSIS

Parents are responsible for helping their child process her emotional reactions to scoliosis and treatment. A girl who is diagnosed with scoliosis can feel hurt, her self esteem can drop, she might be afraid of what will happen, and she may be worried that she will not be able to manage the situation on her own. If your daughter has scoliosis, talk to her about these feelings. Her ability to adapt depends on the presence of an understanding and supportive adult.

Scoliosis is a chronic condition that has long-term implications a person’s sense of self. A girl who has been diagnosed with scoliosis will have to deal with issues of immediate and ongoing loss, and will struggle to incorporate the experiences of scoliosis into her self-image.

Some environmental factors that influence how she is able to deal with scoliosis include how mature she is, how much her personality allows her to adapt, what her situation at home is, and how her parents respond. If her parents are supportive and positive, it makes it easier for her to understand her situation and adapt in a healthy way.

Parents might feel that they have lost the "perfect" or "well" child that they had, and this can make it difficult for them to be supportive, because they may feel sad, angry, or guilty. If the parent cannot be as supportive as they want to because they are upset, the child is then forced to adapt to both situations: scoliosis and a less supportive parent.

In a study of 72 girls with scoliosis between the ages of 12 to 15, it was found that :

• The more positively a mother views scoliosis, the more positively their child views scoliosis
• Positive perceptions of scoliosis by both the mother and child correlate with less depression, anger, fatigue, and confusion in the child.
• Positive perceptions also correlate with higher self-esteem in the child.

(Kahanovitz and Weiser, 1989)