A shocking event.
A child in a hospital (Photo: ShutterStock)
A chronic or ongoing illness is a shocking event for everyone, an event that changes world orders and the daily routine of those who are dealing with the disease, but in many cases also the lives of all family members.
The technical struggle is joined by a difficult mental and psychological struggle, of the family together, and at the same time also of each one separately.
Havi (pseudonym), a sweet and smiling 6-year-old girl, is dealing with chronic arthritis, as a result of which she is required to receive regular medication that includes an injection given at home by one of the parents, every two weeks.
Although the frequency of the injection is relatively low, the injection burns and hurts the experience and causes her great discomfort, which leads to resistance on her part to accept it.
The solution the parents found was to let Havi choose a reward every time she cooperates and gets the shot.
The award did bring some peace to the parents and helped them give Havi the medical treatment she needed, but it created a problem for them in another arena - her older brothers, aged 9 and 11, became very jealous of the attention Havi was receiving and demanded to receive an award as well.
The parents, at a loss for advice, decided to apologize and give them prizes as well, but this solution also came back and presented them with another difficulty with Havi, who wondered: "Why do I have to get the shot if at least they get a prize? They get without any shot."
"Even happy events become difficult"
"The case of Khoi and her family illustrates for us a little bit of how families deal with an illness in one of their children. A family that deals with a chronic illness or an unusual medical condition in one of the family members is a special family - dealing with the situation affects in one way or another every member of the household As individuals, and also for the entire family unit," explains Dorit Ben Gad Elbaz, a medical and educational psychologist and an instructor in the mental health system in the Jerusalem district of the United Hospital Fund.
"The disease has an effect on the daily routine, and even happy events such as holidays and vacations can be experienced in a different way due to the need to deal with limitations or difficulties," she added.
"The development of a chronic disease in a child is a transition from a situation of "being like everyone else", to a situation where he is unusual, different from others and sometimes has to deal with physical difficulties and mental stress for many years," adds Ben Gad Elbaz.
"When a child is diagnosed with an illness, the focus is naturally around the child, and the family's life becomes around the illness. As a result, the unity between the body and the mind is violated, because most of the attention is directed to the needs of the body."
Havi's parents sought professional counseling, and as part of parental guidance and close supervision, a plan was built together with them for each of their children, so that each child received a reward according to his personal needs and difficulties.
More in Walla!
Not only for mothers: a new boarding house for sick children and their families was established in Ichilov
To the full article
Emotional support is needed for the supporting circle.
Illustration of treatment (Photo: ShutterStock)
The story of Havi and her family is one of many stories, an example of one of the many struggles of families who face together an illness of one of the family members.
Many families show inspiring creativity in their dealings with a child who has a chronic illness.
For example, a family with a child with Crohn's disease, who requires a special diet, decided to invite the entire extended family to light Hanukkah candles, prepared special donuts and thus allowed the sick child to eat them as well and allowed him to feel equal among equals.
Another family decided to turn dealing with their daughter's skin disease into a fun family trip to Switzerland, for all family members.
"Each member of the family may experience the disease in a different way"
"In medicine today, we try to work with a solitogenic approach, that is, a health-focused approach," explains Ben Gad Elbaz, who, as part of her work at the United, meets many families who are dealing with a chronic illness of a family member and are looking for advice and guidance that will help them with the mental and family coping that accompanies the physical and technical coping with the disease.
"As part of this approach, the sick person is treated as a whole, and not just the symptoms of the disease. The holistic view of the person, and certainly of the sick child, must include a look at his support systems, and first and foremost the family system. Therefore, it is very important to look at both the parents and siblings, As those who may develop emotional difficulties as a result of dealing with a sick family member, and on the other hand also as those who can experience growth and development as a result of dealing with it."
"14-year-old Yael (pseudonym) came for psychological treatment while her family was waiting for her mother's life-saving transplant surgery," shares Ben Gad Elbaz.
"After the surgery went smoothly, Yael shared that the support and psychological treatment she received during her mother's illness allowed her not only to cope with the difficulty, but also to know herself better, to be able to ask for and talk about things she previously did not dare to, and in many ways to move from a state of worry and contentment towards the parents to a situation where she can grow up and change. All this, even within the situation of the mother's illness. As a psychologist, I often see how crisis situations, including medical crisis situations in the family, are an opportunity for closeness, development and growth."
When a person is dealing with a chronic illness, in many cases he goes through a process of grieving the loss of his health.
The same thing happened to Doron (pseudonym), a 13-year-old boy who was diagnosed with autism.
The parents decided to seek counseling following Doron's outbursts of anger, as well as a drop in mood.
"After several meetings, we realized together that Doron's maturation also affects his understanding and his perception of "albinism", and that he is undergoing a process of reworking his condition," explains Ben Gad Elbaz.
"The mother's connection to the feelings she experienced in the past, in the days when she received Doron's diagnosis, helped her better understand his current situation and help him deal with it."
In the case of a sick child, the parents also go through a kind of process of loss and reconciliation with the existing.
Many times the child and his parents are at different stages of the process, and sometimes a teenage boy or girl who is dealing with an illness goes through stages of coping that their parents already went through when they were little.
"The awareness and understanding of the parents that the boy is in a different place from them, helps them a lot to stand by his side, accompany and support him," points out Ben Gad Elbaz.
When a family has to deal with an illness of one of the family members, it is very important to treat each of the individuals that make up the family unit, and not treat them as a single unit.
"Each member of the family may experience the disease in a different way, and as a result, his or her coping is different. Families that manage to deal with the difficulties, maintain open and honest communication around them, can certainly grow and develop, even from a place of crisis and enormous difficulty," concludes Ben Gad Elbaz
health
psychology
Tags
chronic disease
parenthood