Alcanza Clinical Research

5 Essential Parenthood Tips for Spoonies

1 – Be Honest with Your Kids
Communication is a cornerstone of any healthy relationship. While we typically talk about communication in regard to marriage and romantic relationships, it’s just as important to uphold similar standards with your tiniest family members.

Trying to hide your invisible illness isn’t a good idea for a multitude of reasons. First, you won’t be able to hide it forever. Children are intuitive and inquisitive. It’s only a matter of time before they discover your medicine, unexpectedly overhear a conversation between you and your spouse, or start asking questions. It’s best to tell them yourself so you can control:

what information they receive,
at what age,
and in what environment.
Things are always easier when they’re communicated by Mommy and/or Daddy.

Second, being honest with you children from the start can help them better understand the nature of your illness. It helps ensure that they won’t misunderstand or think you are dying. As life marches on, your child will inevitably be exposed to the ideas of fatal illness and death. When that happens, their clear understanding of your illness will prevent them from putting you in the same category as their friend’s grandparent who died of cancer, etc. This hypothetical friend’s parents probably told their own kids “Grandma was sick” and if your child already understands that you are a different type of “sick,” it will help prevent potential fear or panic for them.

Give Your Kids Some Credit
Kids are often tougher than we give them credit for. They take things at face value, and this purity can help facilitate open communication. They learn new things constantly, so “Mom/Dad has a sickness that makes me tired sometimes, but I love you even when I can’t play,” could be digested far more readily than you may expect.

We seek to protect our little ones from everything under the sun. However, being overprotective can easily backfire. Raising courageous and compassionate children includes gradually making them aware of the world’s troubles and imperfections when appropriate. Seeing one of the people they love most fight a battle with invisible illness will likely make them braver in their own struggles and kinder to others in their life.

Remember to remind your kids that your condition should never hold them back! If they ever try to take care of you or want to slow down to your pace on a day you’re holding limited spoons, gently remind them you want them to have fun and be a kid.

2 – Get Creative with Activities
There are going to be some days you send your little ones off to the park with their other parent or have a babysitter take them from school to soccer practice. And there is absolutely nothing wrong with that! (We’re actually going to talk in an upcoming section about how important it is for you to take time for yourself.)

That being said, there are also plenty of “happy mediums” and ways you can bond with your kids on a day you’re suffering from a flare-up, have a migraine, or are feeling too dizzy/exhausted to leave home.

Read
In our age of electronics, reading a good book is becoming a bit of a lost joy! But reading is just as entertaining, intellectually stimulating, and cozy as it’s been for centuries. You can read outloud to your kids, or even have them read to you. Storytime is a family bonding experience your children will treasure forever.

Color
Coloring is another fun indoor experience for children of any age. Who knows, letting your own creativity flow may even help you distract yourself from your pain. Pass the crayons, please!

Play Board Games
A classic when it comes to family time, a good board game can keep kids captivated for hours. Relax on the couch and put the game on the coffee table for some fun that will keep you off of your feet.

Watch Movies
Not only are movie nights–or days–always cozy and entertaining, they’re also the best option for times you’re doing too poorly to move Monopoly pieces around the board or even speak much. Any spoonie has been there, and probably already knows how perfect some Disney and snuggle time can be in this situation.

3 – Spend Your Spoons When You Have Them
Just as any spoonie can relate to a painful zero-energy day, many spoonies can relate to those glorious “I feel normal and energized” days too. When those occur, spend them on your kiddos! You might be tempted to catch up on some work or housework, but living in the moment with the little ones you love so dearly is an irreplaceable experience. (And who knows, you might still be feeling good enough to clean the kitchen after they’re in bed.)

Newborn baby and toddler brother lie next to each other in bed

4 – Take Care of Yourself
One great analogy is when it comes to parenting, especially if you’re a parent with limited spoons, is to “put on your own oxygen mask before helping those around you.”

(We borrowed this phrasing from this great article for fibromyalgia moms. Take a peek if you’re interested!)

In the same way that you can’t help someone put on an oxygen mask if you’re suffocating, you will have a hard time taking care of your loved ones if you’re only hanging on by a thread.

Rest When You Need To
When you have an invisible illness, rest is not an option; it’s a necessity. Make rest and “me-time” mandatory activities on your calendar. It can help to have designated days and times, especially if you are married and/or coordinating multiple schedules.

Here are some options that may appeal to you:

• Institute “Wellness Wednesdays” with face masks, at-home pedicures, and magazines
• Hire a babysitter once a week
• Designate certain days/evenings on which your spouse takes the kids out and you have the house to yourself
• If you have a willing parent nearby, schedule a block of “Grandma/Grandpa” time each week. (Just make sure your parents or in-laws don’t spoil those grandkiddos with so many sweets they come home bouncing off the walls, reversing some of that relaxation!)

Remember, taking care of yourself isn’t just something that spoonie parents should do! Every parent needs time to recharge her or his batteries– both for their own good AND their kids’ good.

Utilize Meal Prep
Good nutrition is an important part of battling any illness, invisible illness included. Not only can good nutrition prevent your fibromyalgia flareups, but it can also boost your entire family’s health.

Prepare large batches of healthy food when you’re feeling up for it, and then reach for an easily microwaved option on bad days. It’s a lifesaver! When you struggle with invisible illness and consequently have less available energy than the average person, it can be really easy to fall into the domino effect of a poor diet. You don’t feel well, so you order a pizza because it’s easy. The pizza makes your symptoms worse long-term, so you’re more frequently in pain… and ordering pizza again.

This is why meal prep is so important: it gives you proper nutrition without having to cook every night. That way, you can have your broccoli and eat it too!

Bonus: Unless you’re meal prepping lobster and steak, this method of eating at home also usually saves money!

Join Support Groups
One of the hardest parts of chronic pain and invisible illness is feeling alone. You may face confusion from people who say you “don’t look sick” and a general misunderstanding of your condition. While more efforts are being made to shed light on invisible illnesses like fibromyalgia, Crohn’s disease, arthritis, and depression, we still have a long way to go.

Plus, even if your spouse is wonderful, your best friend is sympathetic, and your mom is a gem, there’s nothing quite like talking to people who are going through the same thing and can fully empathize.

Here are a few groups and sites you may want to check out:

“But You Don’t Look Sick” Facebook page
“I Told You I Was Sick” Closed Facebook Group
Men With Fibro
Living with Fibro
Lyme Disease Support Network for online support
Lyme Disease.org to find an in-person support group
Crohn’s support group search, a feature of the Crohn’s and Colitis Foundation site
Arthritis support group search, a feature of CreakyJoints.org
Depression/anxiety support group search, a feature of Anxiety and Depression Association of America
As you can tell, some of these are online chat rooms and Facebook groups, while others are search engines that can be used to find in-person support groups near you. And this list just provides a few of many! We encourage you to find a number of great communities that are best suited for your mental and emotional needs.

5 – Kick Guilt to the Curb
Speaking of mental and emotional needs, don’t feel guilty for having them! Everyone has them, and let’s be real: life dealt you an above averagely tough hand.

Parental guilt is common across the board, and spoonie parents are hardly an exception. In fact, guilt is often compounded because of the limitations your illness puts on you.

Feeling guilty? Read the last part of that sentence one more time: the limitations your illness puts on you.

You didn’t ask for your illness. You didn’t do anything to bring it upon you. You never hoped to miss soccer games or school plays. Your illness is a hurdle that you’re overcoming day by day, and your loved ones are probably prouder of you than you realize. It’s not always easy, but you’re making significant strides.

How can we tell? Because you just took the time to read an article on parenthood tips for spoonies! Give yourself credit for doing this type of research. Give yourself credit for how much you love your kids. Try to love yourself as unconditionally as you love them.

Conclusion
We hope you’ve enjoyed and gained value from our blog post! Invisible illness is far from easy, but hopefully one day soon it will be an issue of the past. Here at Avail, we’re working hard to do our part in this endeavor. Not only do we strive to cure these illnesses, we also research medications and therapies that can potentially make life easier, happier, and more comfortable in the meanwhile.

We are currently conducting clinical trials on fibromyalgia and have room for a few more participants. If you are interested in playing a proactive role in your health while helping in the fight against invisible illness, please feel free to get in touch via the form on the website.