Parenting Chronic Pain: The Roller Coaster of Chronic Pain
It can be really challenging for parents to smoothly ride the roller coaster of their child’s chronic pain.
The treatments that give hope, only to be dashed. Your child’s mood swings. The ups and downs of the pain levels.
The unpredictability of family outings – sometimes they can miraculously happen, and the plans get scrapped at the last minute when your child is not well enough to go. The chronic morning (or afternoon) struggle of whether your child will make it to school.
The times when you’re the Energizer Bunny, researching treatments and being proactive with school and doctors, and the other times when you feel defeated, helpless, and worn down.
Friends come and go from your life and your child’s life. Your relationship with your partner regarding your child has ups and downs, sometimes bringing you closer and sometimes tearing you apart.
Waves of resentment or fear follow your empathy towards your child. The times when you feel the chronic pain has brought you and your child closer together, and other times when you feel it’s responsible for your conflict. The times when you are sympathetic towards your child in pain when she is acting out, and other times when you wonder if she is just a snarky teen.
Whatever your specific ups and downs, every parent with a child with chronic pain has experienced the roller coaster.
What can you do?
It feels very isolating to deal with this problem. While up to a quarter of youth deal with some chronic pain, it may seem like no one other than your child is experiencing this problem and that no other parent can relate.
Your friends and family who do not have a child with chronic pain cannot fully understand what you are dealing with. It can be very healing to join a support group, such as the monthly Parent CHYPchat or the 8-week Creating Bonds program, to get support from other parents who know the chronic pain roller coaster that you’re experiencing.
Make time to take care of yourself—even in very small ways—so your tolerance for riding the waves is higher. Not only is self-care and engaging in creative healing good for you but it also models for your child the types of activities that will be helpful for them.
When children see their parents doing good things for them, they feel less guilty about taking so much of their time. Also, your child may have to be a little more independent if you are not always available or learn to be more flexible if someone else is helping out who does things differently than you do.
Self-care
As the parent of a child with chronic pain, you are frequently in “fight or flight” mode. This means you need ways to intentionally relax both the body and mind.
Body
Take a walk. Ride a bike. Do yoga or stretches. Garden.
You may not have time for a long walk or an exercise class. But even if you barely have any time, whenever you transition to a different activity, take one minute to take a few deep breaths, stretch your arms up to the sky, and then relax your shoulders. It can be helpful to remind your body to breathe and relax several times a day.
You can even scan your body for tight muscles and consciously relax them as you take a few deep breaths. You can put an app on your phone that will ring gently every hour to remind you to do this.
Get enough sleep
Lack of sleep can increase anxiety and decrease tolerance for stressors. While you may be bingeing TV shows to unwind from the day, try to stop what you’re doing earlier in the evening to ensure more sleep.
Do something soothing, such as taking a hot bath or shower, doing a facial, sneaking in a quick nap, or breathing in a calming aroma in the room through candles or essential oils.
Mind
Listen to a meditation or guided imagery. Many good apps for this exist, including Insight Timer, Calm, and Headspace. Some of them have guided meditations as short as 5 minutes.
Journal in bed either at night before you turn the lights out or right when you wake up in the morning before getting out of bed.
Do a crossword puzzle, Wordle, or read. If you don’t have time to read, listen to an audiobook as you do chores.
Do something fun or silly, such as dancing around to fun music as you do chores or watching a comedy instead of a drama. Try listening to music or a podcast once in a while about something that interests you instead of watching or listening to the news. Try engaging family members in a game.
Do something you enjoy, even for a few minutes. Play an instrument, draw, garden.
Socialize
Aside from joining a support group, try to maintain a connection with family and friends. These relationships often suffer drastically when parents are dealing with kids with pain.
Trying to get your family or friends to understand what you are going through may be frustrating. Instead, let them help you take a break from it all. Go for a quick coffee or even just a phone call. Talk about other things, such as what you are reading or watching.
Go to church or temple, school meetings for parents, work events, or any other place where you can have time with other adults that isn’t about your child’s illness.
Ask for help
If you don’t have time to socialize or do anything for yourself, ask yourself whether you need help. Sometimes, parents feel that they have to be the ones to do everything for their children. But you cannot ride that roller coaster if you do everything yourself.
Ask for help. Ask your spouse, if you have one, to pitch in more. Ask a neighbor to pick up your other children. Ask your church or temple if other members can help bring meals over. Ask a friend to come to you so you don’t have to leave the house.
Don’t be afraid to ask for help. Your child will benefit from it, too.
