Coeliac disease puts strain on daily life
text: Eeva Laine, Finnish Coeliac Society
comic strip: Tiitu Takalo
A strict diet as the course of treatment of a chronic disease poses challenges in social situations. The requirement of constant vigilance may be wearying. A person with coeliac disease is always a special case. They need to ask, check and explain. Their well-being is supported if the people around them understand.
The disease is the same for everyone: coeliac disease. The treatment is also always the same: a strict gluten-free diet. However, people have very different experiences of the disease.
Some people treat a coeliac disease diagnosis as a matter of mere practical arrangements. They find out what they can eat and reorganise their flour cabinet. For others, the diagnosis seems to shake the very foundations of their whole life. Their thoughts are filled with shock and despair.
Everyone has his or her own way of reacting and adjusting to a big lifestyle change. That, after all, is what chronic disease diagnosis means.
Strain of constant vigilance and caution
The treatment of coeliac disease is simple in terms of medical science but challenging in the daily life of the people suffering from it. The dietary treatment of the disease means that people with coeliac disease must remain vigilant and cautious every time they put something in their mouth. In practice, the challenges of day-to-day life arise in the grocery shop when reading ingredients lists, for example, or at the coffee table when one must check how the purportedly gluten-free pastry was prepared. Even the little things may become hard due to constant recurrence.
At everyday meals, for example, people with coeliac disease are in a different position to people without a special diet. A well-being survey of people with coeliac disease conducted in Finland highlighted that many find meals a source of uncertainly, annoyance or sadness.
Social situations vital for well-being
The treatment of coeliac disease is distinctively social and public. When diet is the treatment, meals are always a treatment situation. However, meals are not just for sating hunger. Often they are social situations where people share not just food but also closeness and a sense of togetherness.
Many other chronic diseases can be kept private if desired. People with coeliac disease must inform others of their disease in order to get safe food. Many people with coeliac disease find it hard having to put themselves on display due to the disease. They are rarely allowed to quietly be one of the crowd; instead, they must stand out, ask and check.
They are also exposed to constant disbelief and questions. It is really that nit-picky? What will happen to you if you eat gluten? Even if the questions are innocent, being forced to constantly explain things may start feeling stressful for people with coeliac disease.
Many people with coeliac disease say that sometimes they would like to be able to focus on other things at meals than their case history.
Forced to break social codes
There are unwritten rules connected to offering and accepting food at shared meals. It is customary to always serve the guest something to eat, typically something freshly prepared instead of yesterday’s leftovers. Guests are expected to taste everything offered and compliment the flavours.
People with coeliac disease are forced to break these unwritten rules. They ask about the ingredients of the food offered and its exact preparation method. Often they must decline to eat the food, and sometimes they eat things they brought with them.
In this, people with coeliac disease are forced to question the hospitality of the people they are visiting. However, they have no choice. They must act heedless of social codes in order to treat their disease. It does not always feel easy, and the people around them do not always make it easier. Sometimes they are asked ignorant questions. Can’t you have just a little taste?
Does difference bother others?
Difference may be the topmost feeling in discussions around a coffee table. The feeling of being different may be hard for some people to bear, and it may feel better to try to hide it. Young people with coeliac disease, for example, mentioned going for pizza with friends and only eating salad. Many pizza places do not offer gluten-free pizza, and young people do not always feel like making a big issue of their diet in a group of friends.
Sometimes people with coeliac disease feel like they are bothering others. Some find it hard to visit people because the hostess would need to reserve something gluten-free especially for them. It is so expensive, too! Others feel embarrassed when they go for coffee with a friend and need to find another café when the first has nothing gluten-free on offer.
The coeliac disease touches more than just the people with coeliac disease – it also impacts the people with whom they spend time. At worst, difficult experiences in social situations may cause them to withdraw from others and restrict social life.
How does it feel to go without?
Although awareness of the gluten-free diet is constantly increasing, people with coeliac disease inevitably end up in situations where there is nothing suitable for them to eat. Attitudes to situations like this vary. Some people always bring something with them, just in case. Others say that they see the humour in such situations – unless they are hungry. If they are hungry, it is not funny if all they can have is coffee.
When people with coeliac disease are forgotten or ignored, they easily experience difficult emotions. Am I important enough for others to take my diet into consideration? Why are others considered and not me? People with coeliac disease speak of annoyance and sadness. On the other hand, they also describe feelings of overwhelming joy when people have taken their diet into account in some situation, exceeding expectations.
Importance of people who understand
Because of the challenging situations of daily life and the emotions they spark, it is important for people with coeliac disease to have people around them who understand. If one receives occasional inappropriate comments, it is good to also have situations where others are supportive of dietary treatments.
Typically, home is the haven of people with coeliac disease. The realisation of a gluten-free diet is often a team effort at home, and family members take the dietary needs of people with coeliac disease into consideration. The person who understands may also be a friend or another person with coeliac disease whom they met through the local coeliac society. The most important thing is to have someone who understands.
The facts presented in the article are based on the work of the Hehkuva projects of the Finnish Coeliac Society in 2012–2016. The project was aimed at finding out what contributes to the mental and physical well-being of people with coeliac disease and what impacts it.
Experiences were collected, for example, through an extensive well-being survey of people with coeliac disease. They and their family members were asked to write about their experiences. The project also included meetings with hundreds of people with coeliac disease in group discussions and other encounters.
The project developed methods and tools for supporting the well-being of people with coeliac disease. The most central of them is the website for gluten-free well-being, Suunta. This website contains stories and blogs written by people with coeliac disease, psychologists’ perspectives, thought exercises and insightful comic strips and videos.