There are a lot of things that kids need to help them grow up into thriving adults. There are plenty of books out there on healthy diets, developmental child psychology, and strategies to help your kids do well in school. There is very little information available on how to help kids who have an invisible chronic illness like pain, navigate life and the healthcare system. Here are a few tips for helping kids with pain reach their potential and become confident and successful adults.
Validate their experience. Your child needs to hear from you that you believe their pain is real.
The adult test: If my child were an adult and I were their boss, would I let them call off of work because of their pain today?
Teach them the difference between things that hurt, and things that are harming them.
Acknowledge that their pain is not fair, but remember that belonging and hope are powerful.
Establish reasonable expectations: Let them know that you will do what you can to help them, but establish the expectation that doctors cannot fix every problem. Doctors spend their whole lives in school. They are always learning.
1. Validation is Key
It can be incredibly damaging for kids to hear that their pain is "all in their head", to be called a "wuss", accused that they "aren't trying hard enough", or even accused of trying to get out of doing something they don't like. Sadly, your kids are likely to hear all of these messages. As much as most parents desire to shelter their kids from these hurtful things, even if your child doesn't hear them as a kid, they will eventually hear them as an adult.
The challenging thing is that if we are honest as parents, we have to admit that sometimes it can certainly seem like some of those things are true of our kids. To provide a personal example, I once suffered from a chronic cough as a child for months that perplexed my pediatrician. When my mother asked if there was any time I noticed coughing more, I replied "during math." My mother didn't think much of this reply because in fairness, I didn't like math as a child. I had a history of trying to avoid doing math homework because it was difficult for me. I had faked stomach aches at school, for my mother to come arrive to pick me up and find me miraculously recovered because it was now time for lunch and recess.
What my mother didn't know at the time was that my teacher was holding math class in the computer lab in the basement of the school. Unfortunately for me, it took an ER visit with chest x-rays to diagnose pneumonia, and a subsequent allergic reaction to penicillin (the antibiotic they prescribed me to treat it) to solve the mystery. We later discovered that I was in fact having an allergic reaction to penicillin mold in the school basement that was causing my symptoms.
The truth of the matter is, that parenting is a hard job. I didn't know how to give my mother the information that she would have needed to make the connection to solve the reason for my persistent coughing.
My own mother, and lots of other well intentioned parents, sometimes struggle to tell if their child is trying to avoid doing something they don't like. Sometimes kids are whiny and being a little bit dramatic. Sometimes when kids are truly hurting, it's hard to muster up the energy to try hard at something, because they're just exhausted from dealing with pain.
The most important thing a parent can do isn't to prevent their kids from hearing negative messages, it is to help them identify and correct the messages, even if there is sometimes some truth in them. What your child really needs to hear is that you believe in them, even if sometimes you can't believe everything they say. While not everything your child tells you will be true, it is important that they know the pain is not all in their head. Acknowledging that your child's pain is real, and that it is hard to deal with is key. When in doubt, it's better to validate the experience. You can validate their experience and tell them you are sorry that they are hurting.
2. The Adult Test
That does not mean however, that you have to allow them to use that experience as an excuse. Your child's headache may be real, but it does not change the fact that their math homework is due tomorrow. that's where the "adult test" comes in. Parents have to ask themselves: "If my child were an adult and I were their boss, would I let them call off of work because of their pain today?"
As a parent who wants their child to thrive as an adult, your child is going to have to learn to shoulder the responsibilities of working, raising kids, and going to social events, while they are in pain. Millions of adults go to work with a head cold, the flu, back pain, or migraines every day. If your child's pain is something medicine cannot currently cure, it is our responsibility to teach them how to cope as best they can.
If your child is permitted to use their headaches as a reason not to do their homework now, it will become a reason not to get a project done at work as an adult. If they are called out of school for it now, they will likely call off of work for it as an adult. It's important to raise kids with a healthy balance of understanding that sometimes, adults do call off of work because they aren't feeling well, but they also only get so many sick days a year. This can help parents set boundaries for their kids. It can even teach them budgeting of their time. If your child knows that they are only going to get 7 sick days a year that they can ask you to not go to school because of their pain, they will have to choose wisely. It may be helpful for you to think of it in the context of your own job's sick policy, or even Family Medical Leave of Absence (FMLA). A person is guaranteed up to 12 weeks of FMLA in a year that their employer is required to hold their job for them rather than letting them go and hiring someone new.
Considering what your child's life will be like as an adult should they choose to become a parent is an even harder standard. Mom's and Dad's don't get many sick days. Sure, they can occasionally ask the grandparents to come and help watch the kids for a little while or hire a sitter, but there are limits. Consider that you are going to be that grandparent your child calls for help later on, and if your child has trouble working because of their pain, the money for hiring a sitter may be limited.
Putting the adult-test question to your current situation can help you set the tone of what is appropriate now, so that your child is able to cope as an adult and function in a work/family world.
**Pro Tips - keep sick days as true sick days. Think about what you let your child do on days they stay home from school because of pain. While it is tempting to want to comfort your child and distract them from their hurt when they stay home sick, it may not help them in the long run. If your child gets to stay home, watch movies and eat junk food all day, they will be motivated to stay home from school. If on sick days you tell your child that they are expected to stay home in their bed, to sleep, and do the homework they are missing from school, they are less likely to stay home unless they really don't feel well. Most kids with pain feel better when they are distracted and moving, which often means that being in school is a better alternative to laying in bed.
3. Hurt Vs. Harm
It's important to teach your kids that while their pain is real, it may not necessarily mean that they are in danger or are injured. In short, in a healthy body, pain is supposed to tell you about danger. If you put your hand on a hot stove, it hurts because they hot stove is causing tissue damage burning your hand and is dangerous to your body. Pain is supposed to get you to move your hand off the stove, and possibly to go to the doctor depending on how bad the burn is to get it treated.
For people living with chronic pain, there are plenty of everyday activities that hurt like sitting too long, a rainstorm blowing through, or even sleeping, that are not inherently dangerous. Learning to tell the difference between the pains that hurt (and the hurt is real), and the pains that are harming you (causing injury, and require medical attention), is important to helping your kids grow up and thrive as adults. This will help them to not waste money going to doctors for hurt pains that the doctors can't help them with, but also not to ignore harm pains, that if left untreated could be dangerous. For more on how to explain this to kids using the analogy of a car alarm, see Hurt vs. Harm & Car Alarms: Interpreting Chronic Pain.
4. Pain Is Not Fair
It's important for your kids to know that their chronic pain isn't fair. In most cases, your child didn't do something to deserve this chronic pain that they have. Many chronic pain conditions are genetically linked and neither you, nor your child got to choose your genome sequencing. It may help to explain to your child that almost every child has something about their body that they don't like. Some kids wish they were taller, or that they didn't need glasses. It is ok that your child wishes they had a body that didn't hurt and it's ok if they feel like it isn't fair.
If your kids are a little older, you might remind them of Harry Potter. Severus Snape famously tells Harry Potter that "life isn't fair". While Harry and Ron complain that Professor McGonagall doesn't favor them like Snape favors Malfoy and the Slytherins, it is actually to their advantage in the end. While Malfoy received special treatment in their earlier years, it doesn't make him a better wizard in the end. He struggles in potions in their later years at school. While life isn't fair, there are many examples of this in pop culture where heroes experience unfair hardships that they then overcome. Reminding your kids of this in some of their favorite stories may help to give them hope and to help them feel like even if they face challenges and adversity, they are not alone.
Like all kids who don't like something about their bodies however, they will have to learn that there are things about the way our bodies are made that we don't have the power to change. At least not yet. The most that a child who is near sighted can do is to wear the glasses to cope so that they can see. It may help your child to think of chronic pain in their bodies as just one more thing that we can't easily change, and we therefore just learn to manage it the best that we can.
It is also important to remember that we learn new ways to help all the time. Fifty years ago, your child's vision couldn't have been corrected surgically. Today, once their bodies are full grown, there are procedures like Lasik that correct near sighted vision for good. Even if your child has a pain disorder that is not curable now, that does not mean that a way to fix the problem won't be discovered in their lifetime.
5. Establish Expectations
Being supportive of your child and advocating for them is important, but you also need to establish reasonable expectations of yourself and their doctors. Let them know that you will do what you can to help them, but establish the expectation that doctors cannot fix every problem. Doctors spend their whole lives in school. They are always learning, and they do not know everything. Neither you, nor your child's doctors are all powerful. This can be a challenging thing to teach children, especially when they are very young. Children look at their parents as super heroes when they are little. They often believe that a kiss from mom or dad can fix every boo-boo and make it all better.
Sadly as parents we know that this is not true. As much as we want to be able to heal every hurt for our kids, we cannot. As adults we defer to doctors to be able to help us, and sometimes they don't have the answers either. Many well intentioned doctors struggle with where to draw the line in ordering expensive tests for your child to try and find a diagnosis that are unlikely to turn up much. There is a delicate balance of looking for answers thoroughly, without unnecessarily bleeding your wallet dry.
It is ok to grieve with your kids about it. It is a healthy thing for them to see you process that it is hard for you that you cannot fix their pain. It lets them know that you care and that you would take it away if you could.
Many children with chronic pain also have parents who suffer from chronic pain as well. It is worth considering how you respond to your own doctors who are unable to help and fix your health problems. When it comes to children, they say that "more is caught than taught" and kids are the mirrors that let you see more of your own short comings than you might like. Don't forget that setting a reasonable expectation of seeking support and how to accept it when none is available for you starts with the way that you model it for your kids in your own life. How you manage your own emotions and behavior matters.
In closing, one of the best things you can do as a parent to raise kids with chronic pain and help them thrive is to take care of yourself well. As you learn how to manage your own health, your kids will too. That might mean learning to eat healthy together, adopting an active lifestyle to the best of your ability, or seeking help from family, friends, or medical professionals when you need it.
This article is intended for educational purposes to help you think through your parenting approach, but it is not intended as a replacement for individual medical advice. You are encouraged to seek advice from appropriate medical professionals such as counsellors for mental/psychological health, and medical specialists for individual conditions as you need it. If you are interested in learning how to adopt a healthier, more active lifestyle with chronic pain, consider scheduling a physical therapy appointment for a physical therapist to evaluate your unique needs here.