A friend's 5-year-old daughter was recently diagnosed with coeliac disease. What was meant to be a precautionary blood test turned out to be a life-changing event. The news triggered memories of my own daughter's diagnosis, reminding me of how lost I felt trying to adapt our life to a gluten-free diet, at a time when there was little awareness of coeliac disease.
When my daughter was diagnosed, I struggled to help her understand why some new foods had to be included in her diet and others had to be left out. As my anxiety and fear of being misunderstood grew, I wondered why children and parents are not offered any psychological support when diagnosed.
In physical illness, we tend to focus on healing the body and often forget about healing the mind. I asked Steffi Savona Ventura about the psychological effects that diagnosis of celiac disease and other similar conditions can have on children.
Steffi Savona Ventura is a health psychologist. She works with adults and children who either suffer from a medical condition and need further help in coping or whose anxiety or stress is manifested in physical symptoms. She explains that where there is a need for life-long restricted diet, there are many psychological implications for the child and family and addressing them is crucial to the child's well being.
Although awareness of the more common conditions is increasing, proper support is still necessary. Some conditions are still not well known and there is little understanding of the needs of the sufferer. In children, the psychological impact can be distressing because it can make the child a target for bullying and labelling, a common occurrence in many schools. Steffi says this happens mainly because people don't know enough until such conditions affect their own family.
As long as food limitations remain a reality in some social situations, children especially will continue to find it even harder to adapt because of the lack of available options. In such cases Steffi recommends consulting a professional, such as a psychologist, on how to handle the situation and help support your child.
"Communication is the key to understanding how the child and the parents feel about the diagnosis," she says. "This is even more relevant for a parent who needs to manage their own emotions and not project them onto their child."
Psychological effects of diagnosis
Health psychologist Steffi Savona Ventura lists the psychological effects children usually experience and how parents can help.
Mixed feelings
Being diagnosed with coeliac disease or any other food intolerance may generate mixed emotions. For some children who experience numerous medical evaluations and misdiagnoses, a confirmed diagnosis of coeliac disease or other food intolerance may provide a sense of relief and an explanation. For those who experience the subtler symptoms of the disease, diagnosis may be unexpected and confusing.
Health implications and fear of the future
Realising that you have a chronic illness that requires a life-long restricted diet can be a challenge. This is particularly true in terms of the health implications of not keeping to that diet. This realisation may trigger fear and anxiety about the future, particularly when the child and parents do not understand it or how to handle it.
Lack of control
Once the diagnosis has been established, children and their families must constantly monitor their food intake. For some, this may cause anxiety, fear and resentment. Ultimately, we cannot control everything and managing a condition or allergy can exacerbate feelings of being out of control, and therefore increase anxiety.
Rebellion
Children may try to rebel against this forced restriction to regain control over their environment. Rebellion may be expressed in other areas of their lives and not solely in their eating habits, e.g. by resistance towards school, disobeying certain orders, and so on.
Social impact
Allergies or food intolerances have a significant social impact. As many social activities involve food and eating, these situations can be a source of stress for children and their parents. It's common for children to feel socially isolated or different from peers due to their diet.
Low self-esteem
Children may experience low self- steem as they perceive themselves to be different from others. This feeling is exacerbated when children have siblings that do not suffer from the same condition, or when they participate in school activities and events.
Shame and guilt
Very young children may not understand what's happening and may then feel that they are being punished for something wrong. This could make them feel ashamed or guilty without knowing or understanding why.
Separation anxiety
Diagnosis may create separation anxiety in children who feel highly dependent on their caregiver for protection, and who may sense that something is not quite right. Like with all chronic illnesses, adherence to treatment can be difficult for children. For some, keeping to specific diets can involve anxiety about accidental consumption of the allergen, future health concerns, fatigue from maintenance over time, and negative emotions such as frustration, disappointment, and sadness. Their emotional reaction may make them more dependent on their parents or caregivers.
Family issues
Another social impact of coeliac disease and other gluten-related conditions is in the family. Decisions about whether to integrate a gluten-free diet for individuals or the entire household, the effect on siblings when parents have to give more attention and time to one child, or parents' guilt about late diagnosis or misdiagnosis for their child are examples of some of the concerns that may arise.
How can we help children cope better?
- Acknowledging, and normalising feelings is a good first step to helping children cope more adaptively and begin to find ways to take control of their disease and health.
- Explaining to the child as simply as possible what is wrong and what the condition means helps them make sense of the situation. This means they will be less likely to think that they have done something wrong to deserve this "punishment", helping to eliminate feelings of guilt and shame.
- Psychological effects are highly dependent on the coping skills of the parents and family members in terms of their illness perception. Parents who take the condition in their stride, contain their own anxiety, and are problem-solving and empowered, help the child develop similar qualities. On the other hand, parents who are evidently anxious and fearful may instil in the child high levels of anxiety and stress.
- Regardless of age, it's helpful to include children in decisions about sharing information with others (who will be told, what will be disclosed) to help them maintain a sense of control.
- Role-playing can be a concrete way for children to practice how to speak to others, for example, about having a gluten-free diet or how they feel about having a gluten-related disorder
- There may be a tendency for parents to try to shield food-allergic children from adversity and risk. However, although a food allergy may restrict a child's social interactions, aim to provide as normal a childhood experience as possible. Excessive or long standing restrictions such as isolation at meal times or limiting the child's participation in celebrations, could result in increased social isolation and associated feelings of depression or social anxiety. It is important to provide as inclusive an environment as possible for the food-allergic child to foster these developmental stages. All children must be given the opportunity to make new friends, develop more autonomy, expand their social skills, and improve their problem-solving skills in social situations.
- Children's needs may vary according to their age and developmental functioning. For instance, younger children may need help to practice what to say and how to respond to questions. Adolescents may benefit from help in being assertive with others about maintaining their diet.
- For younger children, expressing feelings may be better achieved through play, drawing or acting. Children may also express themselves through engaging in enjoyable activities to help them vent their frustrations.
- For families, communication is important and parents set an example for encouraging expression of feelings and ways to do so.
- Physical activity that the child enjoys help to instil the value of good health and fitness, and may generate good feelings and a sense of achievement and self- worth.
- On more practical terms, planning and preparing foods in advance, having appealing food alternatives available, and engaging in a whole family lifestyle change also help better adjustment.