I have Chronic Fatigue Syndrome and my young daughter is exhausting

Q: I have lived with chronic fatigue syndrome for 10 years. While I feel like I manage my fatigue pretty well through planning, pacing and a supportive partner, I’m often depleted in the moment by the normal, frequent boundary testing of our only child, a bright, creative and busy 5-year-old.

I often find that just negotiating breakfast and putting on shoes on time drains my energy for the morning, and undercuts my ability to provide positive attention and follow-through with fun and productive activities. Our evening routine of dinner, play and bedtime seems to be one fight after another.

I would love your long-term view: Which battles at this stage are important for parents to win? Where can we say “yes” to encourage our daughter’s independence without being too permissive or expecting too much? How can we help her see my physical limits as a reality to accept rather than an excuse?

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A: Thank you for writing in. To begin, our culture struggles with understanding that invisible disabilities and diseases are as valid and disruptive as visible ones. And this is not surprising: Humans tend to trust what we can see, whether it tells the whole story or not. People who live with chronic fatigue syndrome (CFS) encounter doubt and unhelpful advice when it comes to their condition. Folks believe it, but there’s a tinge of “willpower issues” when discussing it, and this can easily seep into the psyche of the person who is living with CFS. (“I can work harder, be less tired, push through. I look fine. What’s wrong with me?”)

It doesn’t have to be that way, and I’m so sorry that it may be for you.

Let’s start with this: Even without CFS, the typical parent can find themselves exhausted by getting a 5-year-old out the door every morning. This age is one of tremendous growth and fun, as well as challenges that come in the form of strong individualism, big ideas and mood swings.

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The cool thing about this age is that while they are little, they are capable of great empathy and age-appropriate responsibility. Ask any kindergarten teacher and they will tell you how up to the challenge most 5-year-olds are! Every child is different, but if you switch your perspective from “getting her to do things” to “working with her,” you may find a world of options will open up. It won’t always be easy, but more cooperation is possible.

Your essential question — “Which battles are important to win?” — is not a useful one, but your second question around independence and permissiveness is. “Win” or “lose” language will put you in more battles with your child, but finding proper boundaries is respectful of your own physical limits as well as her developmental needs.

First thing, call a meeting with your partner and detail the pain points: morning, evening, whenever they may be. As your child develops, you need to have these meetings more often, not less. You and your partner can figure out a new plan, find new options and more importantly, feel supported by each other. Do you need a morning nanny or evening help? What can be done at other times? What can be streamlined or simply dropped?

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Next, you are going to begin family meetings. I know you are tired and I’m adding to your list, but the family meetings should be short, focused and based in connection. The meetings go something like: “This is the Smith family meeting. We are going to begin with appreciations. Tasha, something I appreciate about you is …” You begin with appreciations because they make humans feel good, and everyone in the family gets a turn.

Then, you are going to say, “Tasha, what do you know about mommy’s all-the-time sleepiness?” You want to ask because I usually find that kids know more than we think they do. When you get a sense of what she knows, you can determine how the conversation should go. Then you can describe the syndrome in plain language, and answer as many questions as she has. Finally, end the family meeting with a treat or a dance or a game. Something easy! The reason family meetings work is that they offer a strong dose of connection in the simplest and powerful ways: eye contact, listening, smiling and respectful communication. And then a little fun to top it off.

The following family meetings will revisit what she understands about CFS and creating a “new morning plan.” Lay out what is needed, and let your daughter solve some of these problems. You may be surprised by how helpful and creative her solutions are. By working on solutions rather than finding rules or choosing battles, you are increasing cooperation and fun. I strongly encourage any use of visual art, pictures or photos, as young children are more likely to remember what they need to do when there are visual reminders.

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If you stick with the very simple, very clear family meetings, you may find that the boundaries you create and hold align with your values, and you won’t have to create them haphazardly. Five-year-olds are keenly aware of fairness, so your child will respect that everyone in the house is expected to help, clean and work toward common goals. She may rise to the occasion and love her place in your family’s world.

Of course, there will be dissension from time to time, and tantrums will be thrown and bad days will happen, but the family meetings will create connection, fun and appreciation for everyone’s needs, including yours. They will also serve as a reset if things go off the tracks a bit. You will hold some rules and build your daughter’s resilience, and sometimes you will realize that the battle you’ve chosen is to not teach anything.

Stay flexible, stay value-driven and work with your child cooperatively. Good luck!

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