Fibromyalgia and Kids: What to tell them about your condition (and how they can help)

No matter how young they are, it’s important for your kids to know about your condition of fibromyalgia and how they can help you with it, too. Here is what your kids need to know about your fibromyalgia and how they can help.

Fibromyalgia and Kids: how to tell them about your condition (and how they can help) #fibroparenting #beingfibromom #fibromyalgia

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Trial and Error

Living with fibromyalgia can be hard. Your whole lifestyle changes such as what you eat, your activities, how you sleep, etc. It’s a hard adjustment learning what is okay for your body and what is not okay as well as learning what causes your fibro flares and what prevents or eases them. And when these flares do strike, it’s hard to function especially when you have little monsters children to care for.

Everything is trial and error with fibromyalgia. There are up days where you are feeling well enough to get out of bed or off the couch. Going to the store or being social with friends is a major accomplishment.

And then there are the down days where getting out of bed or off the couch requires too much energy of which you have none. Going to the store? No, thanks. I’ll eat what I can find. Friends? I don’t want anyone seeing me this way.

It takes a lot of preparation, self-discipline, self-teaching, trial and error, and self-awareness when living with fibromyalgia. It can be draining figuring out the illness. But what about the others in your life? A large percentage of people living with fibromyalgia do not live alone. We have parents, caretakers, siblings, close friends, spouses, and – gulp – kids.

KIDS?!

Yep. Kids. You know  – those little people running your house making your life lovingly chaotic? They are the ones that demand just as much attention and care as your fibromyalgia.

This is when I’d like to give you the secret spell to making fibromyalgia and kids so easy to balance. Alas, there is no such spell, but there is a way to create some balance. An additional way to cope with fibromyalgia and prepare for the not so good days is by telling your kids about your illness.

Word of caution here – do not give them all the details. Give them the basics and tell them in such a way that they can understand it.

Fibromyalgia and Kids: How to Tell Them About Your Condition (and how they can help)

10 Tips when talking to kids

#1 Avoid using big, confusing words they may not understand such as fibromyalgia, chronic pain, fatigue or digestive issues. Break it down into terms they know and are familiar with. Also, consider their age. Older kids can readily understand being exhausted or having stomach discomforts. For younger kids, use phrases like ‘being sleepy/tired a lot’ or ‘having an upset tummy’.

#2 Give a quick, short summary of the illness. Fibromyalgia is overwhelming with how much the condition affects the body and all it encompasses. Keep it brief and explain more as they ask questions. You’re starting the dialogue, but let them ultimately guide it with their questions. A great way to do this is by using the book, Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. There is even a coloring book to go along with the story. Color and talk about it as you go!

View

#3 Embrace them while you talk. Kids need to feel loved when talking about something important because they may have unknown or big feelings about it. Body language is important when discussing a serious subject. And hugging during this time will help them to feel less scared.

#4 Kids sometimes feel at fault for the way their parents feel. Let them know they did not cause your condition and are in no way to be blamed for the way you feel. Yes, you’re tired, but that is not because of them or what they have done/are doing.

#5 Ensure they understand you have good and bad days, just as they do. Tell them what your bad days are like: more tired than usual, upset tummy, etc. Remember – keep it simple and let them ask the questions if they need more understanding of what you are saying.

Download a FREE copy of the three-page full-color guide on

Simple Tips to Being a Rockstar Fibro Parent.

Simple tips to be a rockstar fibro parent #beingfibromom #beingfibromom

#6 Let them know you love them regardless of your illness. Tell them their love and the love you have for them is what helps you to feel better. Ensure them your love does not lessen on your bad days.

#7 Let them know they can help. Kids love to help others. It gives them a sense of independence. More further down on how they can help.

#8 Explain to them how hugs can sometimes hurt. Show them how to give gentle hugs and touches to you so they don’t hurt you, but you can still give them love and they give you love. This is important. We don’t want our kids to be scared to touch or hug us.

#9 We will inevitably have flares in our symptoms, so it’s important we have our flare kit for us. But it’s important the kit includes a box of goodies for them, too. This helps them feel included on your bad days and gives them attention while you get the rest you need. More on that further down.

#10 Last, but not least, ask them what concerns and questions they have about your illness. They may have asked questions throughout your conversation, but ask if there are any more. Conclude with letting them know they can ask questions any time they are confused or want to know more about how you are feeling.

October 2019

How They Can Help

Kids love to be helpers, so by allowing your kids to be involved with the solution will make them feel included and important. Some ways your kids can help with your fibromyalgia are (chore charts will come in handy here):

  • picking up their toys
  • putting away the clean silverware
  • vacuuming (for older kids)
  • sweeping
  • putting dirty clothes in the laundry basket

Ask them how they want to help the family, too. This will give them a chance to feel heard and included.

Flare Day List of Activities

Making a flare day list of special activities can be fun for the kids and a great way to make the flares a bit more manageable when caring for your kids.

Activities include:

Ensure your activities:

  • do not require your every second watchful eye (this is based on ages; babies and toddlers should always be watched)
  • no mess to clean
  • are special activities that are only done on flare days (it keeps them special and interested)
  • quiet and peaceful
my oldest daughter made a cartoon cutout for her younger brother during one of my flare days
My oldest daughter made a cartoon cutout for her younger brother during one of my flare days.

It’s an ongoing conversation

Do not limit this conversation to your kids. Include all those close to you and that you would like to have in your support system. Again, avoid the big words and keep it short.

Living with fibromyalgia can be a very private matter and telling others about your condition can make you feel vulnerable; however, telling those close to you about the basics of the illness and the unpredictability of it will most likely grow as well as strengthen your support system.

Join Fibro Parenting

The Fibro Parenting group is for any parent or guardian looking for support while parenting with fibromyalgia. Fibromyalgia is an intrusive illness that can be complicated enough to care for without the added stress of parenting. However, YOU ARE NOT ALONE! There are so many others battling fibromyalgia and trying to be the best parent/guardian we can be.

fibro parenting facebook group #beingfibrommom #fibroparenting #fibromyalgia

Brandi

Hi, I’m Brandi, the writer and creator of Being Fibro Mom and My Fibro Journal. Aside from my work on Being Fibro Mom, I run a group called Fibro Parenting on Facebook. I've been writing for the Fibromyalgia Magazine since 2016 and recently became the Secretary and Fibro & Families program director for International Support Fibromyalgia Network. Facebook-+-Twitter-+-Instagram

10 thoughts on “Fibromyalgia and Kids: What to tell them about your condition (and how they can help)

  • January 2, 2015 at 11:23 am
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    Really great tips and it is such a hard subject to explain to kids.

    Reply
    • January 2, 2015 at 1:12 pm
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      It is difficult to explain, but I hope my tips will help with that conversation. Have a great weekend!

      Reply
  • January 2, 2015 at 3:08 pm
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    I have a couple friends that have fibro, I don’t have it but I do have some chronic conditions of my own, Autoimmune Hepatitis and Graves Disease. Life with chronic conditions and fatigue can be very hard and people don’t always understand. Thanks for this post!

    Reply
    • January 2, 2015 at 3:22 pm
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      People do not understand, but it’s up to us living with the conditions to spread the understanding, awareness, and knowledge to everyone. Thank you for reading! Have a great weekend!

      Reply
  • January 7, 2015 at 5:32 pm
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    That must be so hard! I can’t even imagine.

    Reply
    • January 8, 2015 at 12:55 pm
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      It is which is one of the reasons I have become much more reliant and dependent on my spiritual side.

      Reply
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