Teaching Children About MS

Ash and I haven’t had many conversations about how we would explain my MS to Jai, mainly because it hasn’t come up. The time is coming where one of us will need to sit down and explain why Mommy isn’t like other Mommy’s despite all that I try to do.

Because I haven’t had a conversation with Jai, I did some research and compiled in one place how to effectively speak about a parent with a disability/chronic medical condition. Unfortunately, the internet is surprisingly sparse about how to have a conversation with a child about a parental disability.

If you’ve already had the conversation with your child and want to share how it went, please comment with your story and suggestions below.

Conversation Goals

Before stepping into any serious conversation, deciding what the end-goal needs to be one of the first considerations. Is it important to teach the child about the disease first? Explain how the parent feels because of the condition? or just reveal the diagnosis and leave it at that?

Because I came into motherhood already diagnosed with MS, I will be raising Jai from the beginning to be aware of my disease. If I received my diagnosis after he was born, I would want to keep in mind what information he was capable of handling before entering the conversation.

Ultimately, the goal will always be: I have MS and here’s the important information about the disease.

Compiling a short list of conversation goals would be the most effective way to handle the conversation. Children, no matter their age, have short attention spans. Tailoring this list to the length of their ability to concentrate would be helpful: if they can only sit for two concepts, keeping it to two would be best.

Remember, there will be plenty of time for longer conversations later.

This requires knowing the child and what information they are able to handle. If the child is going through a particularly insensitive period of time, i.e. teenage years, then the goal may be a quick primer about MS. When the child is ready for more information they will sit down and ask more questions at another time.

This leads me to the next concept to consider when sitting down with a child.

Managing Your Expectations

While Jai is never responsible for my reaction to his reaction to a conversation, managing my expectations before starting is key.

If a child is going through a particularly insensitive period or they can’t sit for more than five minutes at a time, then expecting a drawn-out conversation about a diagnosis would be unreasonable for the parent.

Please note that I am not saying unreasonable for the child. 

It is more unreasonable for the parent because there might be a desire for a particular response that the child is incapable of giving at that time. Anything less than the expected response will hurt and can cause an avoidable conflict.

Manage the expectations of what the child can handle. If I sat down with my toddler and tried to explain all there is to know about MS – not only can I expect him not to understand, I shouldn’t expect him to understand.

If a child is not fully receptive to the conversation, it’s still important to give them the information about a parent’s health, but expect them to brush it off as part of their reaction. It won’t hurt less, but it won’t be surprising.

Remember: the child is processing the information just as much as the parent. If they don’t have the ability to manage their emotions in a more mature way, how they react will be normal for their developmental level. Keeping in mind that they don’t have the tact or life experience to be more sensitive should help manage the parental emotional response.

Do not feel responsible for a child’s reaction. It is not a child’s responsibility to comfort the parent. Providing them with information that will eventually impact their lives is extremely important and shouldn’t be avoided, but know that they are not required to comfort a parent at any point during the conversation.

Starting the Conversation

The diagnosis discussion is not going to be a single talk. It’s going to be a conversation that occurs over many years and through various developmental stages of a child’s life.

The initial conversation will depend on the parent’s comfort level. It should happen almost immediately after receiving the diagnosis because a child has a right to know, but all that goes into the conversation will depend on the parent.

I probably won’t have an official conversation until Jai either asks or I feel he’s ready to handle the information. I will, however, plant the seeds of a bigger conversation before then: when we are at the park, instead of just saying “Mommy is done catching you on the slide” I am going to say “Mommy is tired and needs a rest.” This will naturally lead him to ask the question “Why are you always so tired?” when he’s ready.

Without talking down to a child, try having a gentle approach to the conversation. Begin with: “You may have noticed that I have been behaving differently lately and I finally am able to explain why” may be a good starting point. Being calm is another way to help ensure the conversation goes smoothly because it will put the child at ease and feel comfortable to ask questions.

How much to Divulge

Determining how much information to provide will depend on a child’s developmental stage and parental comfort level with the disease. If the parent is still working through the stages of grief, it may not be wise to reveal much beyond the diagnosis.

Ash and I talked briefly about it: we are going to be completely open and honest about my MS with Jai but we are going to tailor our responses to what he needs to know at that particular moment.

For example, how we will explain MS to him:

  • When he’s 3: Mommy has a condition that makes her tired all the time.
  • When he’s 8: Mommy has Multiple Sclerosis which is a disease that makes her tired. It means her body attacks itself like it attacks a cold.
  • When he’s 15: Mom has MS which is a disease that attacks her central nervous system and affects many of her motor functions and day-to-day abilities. At this point, there is no cure but plenty of ways to manage the disease through drug and lifestyle therapies.

Consider a child’s processing abilities. Telling a child the more negative aspects of the disease may cause undue stress particularly if there’s nothing noticable at this point in time. As they get older and become more familiar with mortality and illness, providing them with the darker aspects of the disease may be more appropriate.

I am not recommending to sugarcoat the conversation. Being completely open and honest is the best policy, but taking their mental and emotional health should come first. This is to prevent undue conflict and emotional stress between the child and parent. If the child asks a question, then they are probably ready to handle the answers provided they are tailored to their emotional development level.

Answering Questions

If questions come up before, during, or after the conversation, answer them as much as possible and to whatever the comfort level may be.

Tailor the answers to a child’s understanding helps: if a teenager wants to know what MS is, the response will be more nuanced and thorough than if a young child asked the same question. Be sure to answer all the questions as much as possible and don’t be afraid to say “I don’t know, but we can find the answer together” if necessary.

Remember that a child hasn’t had the same life experience or social learning as an adult, so the questions may be brutish and straightforward. Gently directing them to sensitive wording will help ensure a greater compassion in future questions.

Understanding that they are processing the information too so they may be reacting by asking harsh or unseemly questions. Remaining calm and comforting throughout the process will help set the child at ease if they are upset.

Dealing with the Reaction

The response can go one of three ways: grateful for the information, non-responsive, and a negative reaction.

Unfortunately, while the parent may be in a place of trying to deal with their own emotions over the diagnosis, it is imperative to be a parent first and MS patient second. A child may not act like they need it a the time, but they are going to want comfort from their loved one, especially the one diagnosed.

Remember this: a parent has been a child’s solid foundation in which they’ve grown up on and now something created cracks in that foundation. This may be their first experience with mortality. While MS is no longer a death sentence, it does draw in sharp relief the fragile nature of existence and that will be particularly painful if it’s a parent. A child will need that parent to reassure them so expect to provide comfort after the initial conversation.

While it is not a child’s job to comfort a parent, they may want to as a means to comfort themselves. Receive this comfort with gratitude and comfort them in the process. Remind children that it isn’t their job to comfort or take care of the parent.

If a child has a negative response, it may be necessary to provide them with a safe space to work through their emotions. They may lash out in anger so it will be important to not respond in kind. Allowing them space if they ask for it will help too, so do not prod them for a response or their feelings on the matter. Letting the child come to the parent when they are ready and remaining calm will help ease any tension or feelings of pain.

Teaching Tools

There are very limited resources out there for talking to children about a parental disability (gratefully there are plenty of materials out there for teaching about disabilities in general), but here are some books I’ve found on MS. I haven’t purchased them yet so I cannot vouch for their content, but it might be a great starting point in helping explain MS in a parent.

Tips on how to start conversations about disabilities (from a general standpoint):

The following links are affiliate links. Read more about it in my disclosure policy

Talking to children about an MS diagnosis may be one of the hardest conversations to have so it will be important to remain calm, understanding, and open to all possibilities.

Remember that it won’t be a single conversation, but the first one of many conversations throughout their childhood.

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