By Janis Arnold, LICSW, The Celiac Disease Program, Boston Children’s Hospital
Celiac disease is a common autoimmune condition involving the small intestine that is triggered by the ingestion of gluten in genetically predisposed individuals.
A chronic childhood medical condition is a family medical condition. Children are more than their guts. Celiac disease affects every aspect of a child’s life, and that child is part of a family, and is often a sibling.
The adjustment of siblings to a celiac-friendly home and lifestyle can often be under recognized, amidst the dizzying logistical, emotional and educational demands of the child with celiac disease.
Meeting all the needs of your child with celiac disease can seem to use all your energy and focus. However, being the sibling of a child with celiac can have its own effects, and with attention, can ultimately be a growth-enhancing experience.
Demystify the celiac disease as much as possible. The “D” word can sometimes be scarier than it needs to be.The impact of the demands of celiac disease on siblings can yield mixed responses. Sibling can easily become forgotten, and harbor resentment about not receiving as much attention as the child with celiac, and could even have fantasies about how they may have wished or even caused their brother or sister’s condition. However, research also cites positive influences on self-esteem, resilience, and family closeness, resulting from rallying as a unit to manage the daily demands of incorporating a gluten-free diet into a home and lifestyle. Often, sibling concerns and issues fade over time, after the initial adjustment to a new celiac diagnosis. However, the reaction of siblings to learning that their brother or sister has a lifelong medical condition can indeed evoke a range of emotions. These can vary from potential fears about what this means for the sibling’s long-term well-being, to concerns about their own or their parents’ vulnerability to illness.
Reactions of SiblingsReactions and experiences can be as unique as your child, but there are some recurrent themes and common experiences of siblings:
Guilt: the power of imagination sometimes leads younger siblings to have beliefs that angry feelings toward a brother or sister caused celiac disease. Many parents sometimes assume that talking about the celiac will unnecessarily upset siblings and enable ongoing unease. Avoiding the conversation can often only reinforce that it is something very negative and that siblings are not entitled to know about it.
Anger: the demands associated with the constant vigilance and parents’ preoccupation with various needs, including ensuring safe food choices and avoiding cross-contact, can be at the root of siblings’ anger. Deliberately planning separate and protected times with siblings can help your other children feel compensated for medical demanding periods or daily surveillance.
Resentment: siblings can feel resentful if they are asked to make compromises for the brother or sister with special dietary requirements. They may feel that it isn’t fair that just because a sibling has celiac, they have to live as though they do as well.
Fear: having a brother or sister with celiac disease can shatter a sibling’s myth that serious health conditions or demands happen only when a person is old, and a sibling may lose a sense of their own invincibility. Siblings often develop phobias that even the smallest symptoms may be serious, recalling the abdominal pain or discomfort that lead to a brother or sister’s diagnosis of celiac. Sometimes the fear is legitimate; we all know the potential that other family members could test positive for celiac. It is important to explore these fears, while not providing false reassurance, should a sibling wind up testing positive as well.
Jealousy: It is not uncommon to have some siblings secretly wish they had celiac, as it would surely mean the same amount of time and attention from a parent. Siblings may develop physical complaints, such as sleep or appetite disturbances, or abdominal discomfort, and these can often represent anxiety about becoming ill or the wish to have a medical condition, if it will result in what is perceived as imbalanced attention.
Younger siblings, in particular, usually need basic information about celiac—how did my brother get it? Did I have anything to do with causing it? Will this happen to me or someone else? Is it contagious? Direct and clear information is the most useful. Most children engage in magical thinking, and siblings, who often don’t come to the doctor visits or have frequent access to the same explanation that you or your child with celiac do, often have myths about cause and effect. It is striking how frequently siblings pick up bits and parts of the story from phone conversations, reading materials, anecdotes, and make up their own story, which is often worse than the real story affecting their brother or sister. Children often adjust best when they feel a sense of mastery over the information; including siblings in the daily management of the celiac demands is a great way to involve them and demystify the experience. It can also help prevent the sense that there is a conspiracy to keep this medical “secret” between just the parent(s) and their brother or sister.
Communication is keyThere is no reason to present highly medical or technical information or explain frightening scenarios about what would happen if your child didn’t follow a gluten-free lifestyle; again, sharing basic information that a sibling can use is the best route. What siblings don’t know is often scarier than what they do know. Encourage siblings to talk with your child with celiac and ask questions directly of their brother or sister – they can ask what having celiac is like, how he or she is feeling, what it is like to go see the doctors.
Demystify the celiac disease as much as possible. The “D” word can sometimes be scarier than it needs to be. Invite sibling to come to doctor’s appointment or lab visits, so they can see what the office is like and get a better familiarity and comfort level with their sibling’s experience.
Boston Children’s Hospital
Give siblings something to do to help with the demands. Involve them in cooking new recipes, going grocery shopping at specialty food stores, involve them in gluten-free taste testing. This will make the demands a positive family activity. Research also shows that children who are exposed to appropriate levels of caretaking at early ages are likely to develop a healthy sense of empathy.
Try to normalize days as much as possible. As you well know, adjusting to a diagnosis of celiac disease can bring about a sense of loss – loss of the anticipated childhood, family kitchen, and lifestyle. It can often feel like things are spinning out of your control – which gives you a sense of how it may feel for siblings and children. Restoring or establishing routine and predictability are important, when practical.
Given that your child can only eat certain foods safely, every family makes different decisions about whether to make entire home gluten-free. This is a very personal decision for each family, and there is no right or wrong answer. It is important to be realistic, and note that siblings without celiac disease are siblings without celiac disease. Many may feel punished if forced to adhere to the same strict diet, for no immediate or concrete personal reason. This can often lead to additional anger or resentment. Often times, families find it helpful to have separate shelves in the pantry for each sibling. If your child with celiac has their own “supply” of safe food, siblings do as well, so as to increase feeling of equity; everyone has access to foods from which no one else will take.
Responding to siblings’ efforts to understand celiac disease can often lead to a greater sense of control, and prevent them from needing to seek it out elsewhere.
Celiac disease and the associated demands and lifestyle bring about a monumental change to predictability, daily routines, social life and family relations – this is all very normal. Working as a family to respect and explore sibling considerations can help a family make steps toward not having it inevitably affect its long-term quality of life.