Multiple Sclerosis: How to break the news to your children?
Published Sep 21, 2023 • By Alain Lagreze
Telling your children about your diagnosis is a delicate yet necessary step. There is no "one-size-fits-all" method to prepare for these sensitive discussions.
Nevertheless, Alain Lagreze, an expert from the LFSEP (French League Against Multiple Sclerosis), offers some guidance in this article. As a multiple sclerosis patient himself, and a father of two children, he reflects on his own experience. Having completed the Patient Expert training program at LFSEP, he currently collaborates with the teams at the Timone Hospital in Marseille, France, to conduct Therapeutic Patient Education workshops, addressing the concerns of patients who are preparing to disclose their illness to their children.
In this article, he addresses the following questions:
Why should you inform your children about your illness? When is the right time to do it? How can you prepare and adapt your message according to your children's ages?
You'll find all the answers in this article!
Why disclose your diagnosis to your children?
Multiple sclerosis is an unpredictable disease, making it difficult to grasp and understand. It's also a "family" disease because as the disability evolves, the lives and activities of the entire family will be affected.
Children can sense that something is happening within their family: they feel their parents' worry and stress, and they seek to understand the source of it. It's important that they are not anxious or discouraged from asking questions and discussing sensitive and important topics that may concern them.
Announcing the illness opens up a dialogue, encourages discussion on the subject, and helps to avoid worries, taboos, fear, or uncertainty (the feeling that something is being hidden). By making them understand that discussing the subject is possible, children will feel empowered to ask questions when they feel the need.
Regardless of the age group, it's also an opportunity to explain the treatment process and procedures (whether they are done at home or require a hospital stay). This helps to demystify frequent hospital stays and integrate them into a regular care process.
"Illness is part of everyday life, but everyday life should not revolve around the illness."
When should you inform your children of your illness?
From the parents' perspective, the preliminary steps before the announcement are as follows:
- Parents feel ready to talk about their illness.
- They have acquired basic knowledge about the illness.
Many therapeutic patient education (TPE) workshops are available in healthcare facilities and hospitals all across the country. They can be a very useful tool to assist parents in overcoming these two preliminary steps.
How to tell your children about your disease?
Every family is unique and has its own habits of exchange and communication. Adhering to the usual parent-child modes of communication within the family when discussing illness helps avoid solemn or unusual contexts that can be stressful or worrying.
Announcing the illness is a special moment that needs preparation to precisely define what you want to say and how to say it.
What should you say?
The explanation of the illness and its impact can be limited to the different symptoms that currently affect daily life, without delving into possible or future consequences, as they are unpredictable.
It is important to address major concerns about the illness:
"It's a disease that will always be there, we can't cure it, but we won't die from it."
"It's not contagious."
How to tailor the announcement based on the age of the children?
The illness and treatments can be explained with simple words adapted to each child's age, their level of understanding, and maturity.
Following these explanations (either promptly or a few days later), questions may arise from the children. Here are some examples of questions that might be asked:
TODDLERS (up to 6 years old)
Children in this age category primarily need reassurance that their actions do not influence the illness and that their parents will always be there for them.
"Sometimes I'm tired because of the illness, it's not your fault."
CHILDREN (6 to 12 years old)
A detailed explanation of how the illness works is not necessary. A simple explanation of the illness and how it affects everyday life situations is more relevant.
"Can I still invite my friends over to the house?"
TEENAGERS (> 12 years old)
You can explain how the illness works and its effects more precisely.
Inform children about the care process, ensuring that the child does not get too involved so that they can maintain their adolescent activities and not become a caregiver.
"Am I going to get your illness?"
How often should this disclosure process be reiterated?
Symptoms and treatments will evolve during the course of the illness, so it is likely that the disclosure process will become a recurrent part of family life. For example:
"I'm going to start a new treatment... I'll be using a cane... I'll need to use a catheter to go to the bathroom."
Each time, the "Explain," "Reassure," "Answer Questions," and "Adapt" process established after the diagnosis can be reused.
Treatments and hospital stays are also recurrent processes. They can be announced in advance:
"Tomorrow, I'll be at the hospital all day for my treatment... you know, like usual, every X months."
Addressing a serious illness within the family, especially when communicating it to children, requires compassion, understanding, and a tailored approach. Each family is unique, and there is no one-size-fits-all method for discussing the illness. Instead, it's crucial to adapt the conversation to the child's age, comprehension level, and emotional needs. Honesty, reassurance, and simplicity in explanations are key principles to follow. Additionally, as the illness progresses, the discussion may need to be revisited periodically. Through effective communication and support, families can navigate the challenges posed by illness while fostering understanding, resilience, and a sense of togetherness amongst all members.
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