Explaining COPD to a Child

Telling Kids About COPD

You have spent the days since your diagnosis thinking about what your chronic obstructive pulmonary disease (COPD) means to you. You experience the fear, shock, confusion, sadness and anger that comes with a new medical diagnosis. You worry about yourself. You worry about how you will manage the changes that are coming.

Before long, though, you begin to shift your focus from yourself to the others in your life. Your spouse has been attending your appointments and you have talking to your friends.

But what about your kids? If your children are grown and have a good grasp on your functioning and the warning signs, they will likely handle the news well. But what about your kids’ kids?

Since COPD most often occurs in people over 40, communicating the effects of COPD to children and grandchildren becomes of paramount importance.

You may be thinking that the children in your life are too young or too immature to understand the situation. You may think that you are protecting them by not being honest with them.

But in actuality, even young children are more intuitive and perceptive than you give them credit for, and once children become aware of changes in their environment, they piece together the puzzle.

Unfortunately, if they do not have the correct information, they will be led away from the truth and often imagine a scenario worse than the reality.

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Talking to Your Kids

When you discuss the topic of COPD with your kids or grandchildren, good things happen. They feel less isolated and less disconnected from the rest of the family. They learn that they can trust adults, since adults are being truthful.

More importantly, they learn to trust their own perspective as they work through the emotional experience triggered by the situation.

Talking to the children in your life also benefits you as it forces you to process your own thoughts and feelings resulting from the COPD.

It becomes too easy for people with a medical condition to deny or ignore their situation. Staying in denial interrupts the grieving process and leaves you more likely to behave, think and react in ways that hurt yourself and the people around you. Communication is the answer.

Keep it CRISP

Assertive communication is the best type of communication. Whether you are speaking with your doctor, your boss at work or your grandchildren, assertive communication will allow you to express yourself freely and openly.

Your message will be received in a more positive way because you will be respecting yourself and the other person. C.R.I.S.P communication is assertive communication. Here’s how to keep it crisp:

  • Change your mind. Forget the idea that the communicating about your COPD will do more harm than good. People care about you and your thoughts, feeling and opinions.  They want to hear what you say because your information leads to better choices and a more complete understanding of the situation.
  • Respect yourself and them. Do not sell the children in your life short. Just because they act foolishly or speak immaturely occasionally does not mean that they are incapable of understanding the situation. At the same time, respect yourself by finding balance with the principles and beliefs you have.
  • I. The most assertive communication involves “I" messages. Saying, “I have a disease called COPD and I would like to talk to you about it," is a better strategy than saying, “You need to go look up COPD online." Be sure to include information about how you are feeling and how you expect them to feel. “I" messages allow the person you are speaking with to understand your feelings, which begins to serve as a guide for them.
  • Specific and direct. If you want to tell someone something or pass along a piece of information, be specific and direct. Making good eye contact and avoiding distractions will assist with this task. Have the conversation in a safe, comfortable spot. Work to be clear and concrete with your expectations. People using passive communication tend to say too little or too much. In either case, the point of your communication is likely to not be well-received. Take communication slow and simple.
  • Practice and Prepare. What is your goal for this conversation? What do you want to say to them? How do you want them to respond? What do you do if they respond in an unexpected way? You can never cover every contingency or situation that may arise, but with planning and preparation, you can begin to consider likely possibilities. One the best methods of preparation is to be well-informed about COPD itself. At times, COPD can be overwhelming and confusing for you. Imagine how your children or grandchildren feel. If you become well versed on the topic, you will be better able to explain it simply and effectively.
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Where to Begin

Starting the process is the most challenging aspect. You may be finding yourself waiting for the “right time" to do it or hoping that someone does it for you. Forget about what is easy and begin thinking about what is best.

What’s best is that your child or grandchild hears the information directly from you. Otherwise, there is a chance that your COPD becomes a topic that is never discussed and becomes the elephant in the room. Rather than look for the right time, tell yourself that there is no wrong time.

Starting the conversation with the children in your life gives you the power and control in this situation. If you wait until someone asks you about it, chances are better that you will be caught off-guard and will react in less desirable ways.

A general script looks like this: “I wanted to talk to you because grandpa is sick. I have a disease called COPD. It means that it is harder for me to breath. It makes me cough a lot, get dizzy and feel tired. As time goes by, it will be harder for me to breathe. One day, hopefully not for a long time, I won’t be able to breathe anymore, and I will die. I wanted to tell you because you are important to me and you deserve to know."

This approach may trigger some discomfort for you as well as the child. Do not fear discomfort, though. COPD is an uncomfortable diagnosis. The discomfort is actually helpful as it allows for change and progress to occur.

Open your Eyes and Ears

Communicating with a child is not about sitting them down to listen to your lecture. The best conversations are reciprocal and go on for a period of time.

Chances are good the child will experience feelings of shock, confusion, denial, anger and sadness in regards to the news. Keep your radar up by watching their reaction and listening to what they have to say.

If they look confused or say that they do not understand, give more information. If they begin to display or state feelings of anger, permit them to do so. Voice your understanding and that you feel the same way. There is comfort in knowing that other people feel the same way you do.

Too often, people fear expressions of emotion. They make them feel awkward and unsure of themselves. In this situation, emotion is good because it means that the child is processing the information.

Learning that their parent or grandparent is sick will make the child feel sad, but you cannot run away from their tears. Instead, choose to comfort them with a hug, a tissue or reassurance that you will spend the time you have left to its fullest.

Continue the Conversation

Starting the conversation is a challenge for many, while others find that maintaining the conversation is more difficult. People, especially children, require varying amounts of time to process information.

Perhaps the child will react immediately, or maybe he will not want to talk about it for days or weeks later. Check in with the child frequently to let them know the lines of communication remain open.

Another way to continue the conversation is by keeping the child aware of your progression, decline and treatment. You may want to invite them to a doctor’s appointment so they have a better concept of where you go and what the doctor looks like. This will give the child an opportunity to ask their own questions to staff that can provide clear information.

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Conclusion

There is no “right way" to have a conversation with a child in your life about your COPD. The only “wrong way" is to not have the conversation at all. As long as you are open, willing and honest with the information and your feelings, you can turn a negative situation into a way to bring your relationships closer.

If you use CRISP communication for explaining COPD to a child, and continue the conversation, you help the people you love, and they, in turn, help you.

Next page: using CRISP communication to talk with children, and where to start. 

Next page: the importance of listening, and continuing the conversation.

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