"We've never heard of this disease before. The hardest thing is being told it's chronic."

Barcelona"Mar was very small, 16 months old, and had only been walking for a month when she was diagnosed. In her case, it started with knee inflammation that prevented her from walking. In three weeks, we had the diagnosis: juvenile idiopathic arthritis, a chronic, lifelong disease," explains Helena Soler, Mar's mother, who now... In her case, the diagnosis came quickly: the pediatrician referred them to the Sant Joan de Déu Hospital and after some tests, in less than a month, they had the diagnosis. But, on average, children with this type of disease take two years to be diagnosed after the first symptoms appear, according to data from the Platform of Patient Organizations.

"When you get the diagnosis, they give you all the information. They tell you not to search online because you'll find everything. They suggest you seek psychological support and mention some associations, but then you get home and say... what now?" explains Helena. For these new parents, the news was a difficult shock to accept, and the feeling of loneliness faced with the diagnosis was also difficult. "We had never heard of this disease; the hardest thing is suddenly being told it's chronic. We didn't know anyone around us who had it, or who had suffered from it as a child; for us, it was a huge shock," she recalls.

"The moment of diagnosis with this type of disease is stressful. To explain it, I use the metaphor of a tornado or a storm that suddenly appears and seems to sweep away many important things in our lives," explains Laura González Riesco, a clinical psychologist at the Sant Joan de Déu Hospital. In Spain we love That nearly 19% of children under 14 years of age—more than 1,300,000 boys and girls—suffer from a chronic illness, the consequences of which impact their quality of life. "The word chronic is very relevant, because it tells us that the stressors are ongoing: hospitalizations, outbreaks... Many are unpredictable, so the emotional impact must be monitored, detected, and treated. When we can't cure, supporting and caring for them is even more important," explains González.

Between hope, denial and acceptance, the emotional process

Like many chronic childhood illnesses, Mar's illness causes flare-ups. The first one was in her knee, and to treat it, she was sedated, underwent surgery, and had the fluid accumulated in the joint removed. At first, Helena and her partner thought it would be a one-off. "We assumed 'this was just a sporadic flare-up, our daughter won't have anything, it was just that scare' because you don't want to believe it," she says. The second flare-up, three months later, affected both knees. Then that initial hopeful reaction began to crumble. "The worst was when the second flare-up came, when we realized it was serious, that she had an illness, and perhaps it would be a long road," she says. At that point, when the idea of a chronic illness became more real, they sought second opinions and other experts, believing they would find a solution or a treatment. "Then came uveitis, which is an eye inflammation that can cause pain or discomfort in sunlight, directly related to the disease, and very soon it recurred. "After this, we entered the assimilation phase; we told ourselves we had to face it and keep going. It's like nausea, vomiting, and discomfort. "Starting medication was another big change," Mar's mother recalls to González. The diagnosis directly affects the child, but the entire family system suffers socially and psychologically. This uncertainty is felt because "you never know what will happen and when another flare might occur." Many studies indicate that parents of children with chronic illnesses are twice as likely to suffer from mental health problems. Furthermore, when this discomfort is not detected or treated properly, it can make it difficult for the child to adapt to their illness.

The psychological impact on the child, now chronically ill

The child's maturity will be key to coping with this diagnosis with greater or lesser awareness. "The child's age and stage of development are key to how they will understand the illness and the medical process, as well as their reactions and how they will cope with the disease," explains González, also coordinator of the consultation and liaison team at the Sant Joan de Déu Hospital in Barcelona.

For example, between the ages of 3 and 6, children will tend to think that anything that happens to them (good or bad) is related to their behavior. "It's important that they don't feel any personal guilt about the illness, and it's also very common for children to be afraid and resist medical treatments, to cry, rage, and despair, or to exhibit regressive behaviors as a way of reacting to stress," explains González. Mar, although she doesn't yet understand that she suffers from a chronic illness, knows that she has to go to the doctor and she accepts it. "She's aware that sometimes her knee hurts and sometimes her eye hurts, that we go to the doctor to have it treated, and given her age, because she's very young, we've never hidden it from her. She comes into the office, shows the dolls to the rheumatologist, and when they have to look at our eye, it just feels like a mess," says Helena.

During the period from 6 to 11 years old, children already understand the concept of illness. "At this age, they are very involved in school achievements, participation in activities, and making new friends, and this has a significant impact when we talk about a chronic illness, because they often have to miss time off to go to the hospital and may miss out on leisure and social opportunities, or they may face academic impacts." According to the psychologist, this is a time when children at this stage may express sadness and anger.

"Adolescence is a particularly complicated time due to its vulnerability," says González. During this stage, the search for one's own identity and the need for affirmation and belonging to a group are very important. "One of the greatest concerns of adolescents with a chronic illness is the impact of the illness on their social and emotional life, their relationship with their body image. If the illness is physically visible, it causes more distress," adds the psychologist. In some cases, during this stage, they may express rejection of the illness, become more irritable or isolated, or even stop taking their medication. "For other families of theReu+ association This is a very pressured stage. Children want to hide their illness; they don't want their friends or their school to know, and they don't want to take their medication. I think it's a long-distance race," Helena reflects. According to González, around 25% of children with chronic illnesses may have a mental disorder, primarily related to anxiety and affective symptoms.

The invisible burden: social and economic challenges

"Suffering from a chronic illness carries an added invisible burden, a double vulnerability, related to the stigma and the loss of academic, leisure, and social opportunities. We know that educational and social experiences improve the quality of life of children with chronic illnesses, as well as the opportunities to socialize and, moreover, learn like everyone else." Trying to offer as normal a childhood as possible while also needing to care for the illness is one of the greatest challenges for these children's families. "Socially, we've had to slow down a bit, try to always do activities with her in mind, and in times when we don't see her well or when it seems she might have an outbreak, we cancel plans at the last minute and stay home." With the medication, Mar's immune system is lower, making her more prone to contracting viruses, and this, in part, limits her in certain social and family activities. "There's a fear page because it's still an autoimmune disease. If they catch a virus or any other illness, it can cause another outbreak, so it affects us. If a lot of people have a plan, we prefer to shut down and opt out," she comments. Studies show that 73% of families experience a significant socioeconomic impact due to the costs associated with their children's care and treatment, and that 64% report feeling socially isolated.

"In the family setting, it's difficult. You try to minimize the illness and its effects because you know that otherwise, the grandparents will suffer and worry. But at the same time, we try to get everyone involved and see that it's an illness, that we must follow the doctors' instructions, and that they shouldn't downplay it," Helena comments. Not asking too many questions or downplaying certain decisions are some of the situations that become normalized in the family setting. "Parents may face reactions from their immediate surroundings that add to their discomfort, such as a lack of understanding and support from their closest circle," González comments. In the workplace, Mar's regular medical tests force her parents to miss work every two weeks for tests and check-ups, like many families in this situation. "At work, it's been tough because she's checked very frequently, and it's not just a one-hour visit, but we have to travel to Barcelona, ​​get the tests done, etc. Luckily, both of our jobs have been very understanding and welcoming," she explains.

Community support

"One of the things that has surprised me the most throughout this whole process is the human aspect," says Helena about the support they have received from the association. Reu+"I was very reluctant; I thought I didn't need to be part of it, but when uveitis [inflammation of the eyes] came, I thought I did. It was hard for me to make this decision, but I think finding the support of people who have experienced or are experiencing the same thing has helped us a lot," she explains about her experience and brings together people with whom she seeks to inform, educate, and train.

"Knowing the disease well, trusting the medical team, asking family and friends for help when necessary, and creating a social support system—in which family associations play a key role—are good strategies for managing parents' distress," says González. Research shows that social support helps reduce stress. For the psychologist, creating spaces and having people with whom to share experiences, emotions, and related concerns is essential to dealing with this situation. "In the end, healthcare professionals, no matter how tactful they are, see many diagnoses every day, but it's the family who takes all this home and asks themselves: 'What do I do now?' That's why the human aspect is fundamental," says Helena.