When it comes to helping our kids with chronic illnesses, it's best to be proactive rather than reactive. If we take steps to normalize chronic illnesses for our kids, we may be able to teach them to cope with their condition, promote healthy social relationships, and avoid mental health struggles.
Most kids (and adults) experience feelings of isolation and struggle with not "fitting in" from time to time. According to the surgeon general, Dr. Vivek Murthy, the greatest public health threat in the United States today is not cancer, cardiovascular disease, drug overdoses, or even obesity. The epidemic that the country currently faces is loneliness (1).
While loneliness is challenging for all of us, for kids with chronic illnesses, it can be especially tricky to navigate. The truth is, there are things about all of us that make us unique and different from others. This is both a good thing and a bad thing. Our differences allow us to excel and serve others with our gifts. At the same time, our differences can make it difficult for others to understand us, which can be isolating.
Some of our differences are things we don't have the power to change. When a child has a chronic illness that cannot be cured, it can leave them feeling helpless, isolated, different, and misunderstood. It can be difficult for them to see their illness as having any kind of positive "silver lining".
Even if a child with chronic illness has a stable home environment with loving parents (who may even share in their genetic health conditions), and medical providers who validate their experiences, their healthy adolescent peers are often not able to understand the unique impacts of living with chronic illness. As kids make the transition into adolescence where they begin to value the opinions of their peers more than that of their families, feelings of isolation often increase. Their peers are growing and developing like they are. As they learn to see the world from more diverse perspectives than their own, there are bound to be misunderstandings and awkward moments.
If an adolescent doesn't have support at home, and doesn't receive support from their medical team, the effects can be devastating. Kids who experience gaslighting on all sides, (at home, from doctors, and from peers) are often unable to cope with the lack of support and their mental health suffers.
When kids feel there is nothing they can do about their illness, and that no one is listening, they sometimes begin to question their own sanity. Feelings of helplessness become hopelessness. Hopelessness is especially problematic because it is an experience that often leads to depression, and in some cases precedes struggling with thoughts of suicide. If you notice signs or feelings of hopelessness in another person or in yourself, it's best to be screened by a healthcare provider for depression to determine if referral to a mental health specialist would be advised. If you don't have access to a doctor, the National Mental Health Hotline is available to anyone in the United States by phone 24/7 by dialing 9-8-8.
So how can we be proactive rather than reactive? Here are some simple strategies for normalizing chronic illness for kids.
6.) Empower Change
Teaching Kids to Talk About Chronic Illness
Teaching kids that their illness is something they don't have to be ashamed of is important. Modeling talking about disabilities in a way that does not view that person as inferior can help. A disability is something that should be recognized and accommodated for, if possible. If you as a parent have the same disability as your child, or even a different disability, modeling talking about your own disability publicly in front of your child can teach them to do the same. If they see that you are not rejected and are treated well when you disclose your own disability, it will create a sense of safety for them. It establishes that the world around them is an open place, and that differences are both respected and ok.
Let's consider what kind of language can best help others understand your child's disability. You may also want to consider how much your child does and does not want to disclose to others.
For some kids, disclosing their specific illness may be too personal. For others, it may be vital. Making sure that the fast-food worker understands that you have an anaphylactic allergy, and that a mistake in preparing your food could kill, may be the shock factor that is needed to keep you safe and healthy.
On the other hand, it is important to respect that medical information is private, and it's unwise to pressure kids to disclose the information against their will for issues that are not life-threatening. Forcing disclosure without their consent or agreement can make them feel even more powerless about their condition. Allowing them to preserve their sense of control in who they do and don't share with is sometimes the better choice.
Perhaps a generic approach is best for your child. There are many people with "invisible disabilities" (see: The Invisible Illness: Why Can't My Doctor See My Pain?). Explaining this to other people may feel safer for your child. Help them to prepare a way to communicate with others generically. Helpful examples might include:
1.) Talking about needing glasses. Many school age children need glasses or wear contact lenses. When you look at a person wearing contact lenses, you may not realize just by looking at them that they need corrective lenses to see. Both the disability, and the treatment are essentially invisible. If a person isn't wearing their contacts that day, they might have trouble seeing the board in class and need to sit closer to the board. You may not be able to tell which days they are able to see and which days they are not. A teacher, however, would not refuse a child who asked to sit closer to the board on Tuesday so they could see, simply because they could see fine on Monday from the back of the room.
2.) Talking about cancer. Most adults can understand the concept that while cancer may be more common in people who are 90 years old, that doesn't mean that you can't get cancer when you are 3 years old. The funny thing about that is, that no one knows that 3-year-old has cancer right away. It isn't until they start chemotherapy and lose their hair that people notice; even though the cancer was there the whole time and even before they lost their hair.
An invisible disability means other people can't see their disability, but that also means they can't see the disabilities of others. Having a disability is actually far more common than people think.
Highlighting How Common Chronic Illness Is
It can be helpful for kids to know they are not alone. There are likely many other people who have the same chronic illness that they do. Searching for statistics on how common their disability is and sharing them with your child may help them to realize they are not the only one.
If, for example, your 15-year-old daughter is diagnosed with fibromyalgia, studies would show that about 3-6% of kids between age 15 and 19 have fibromyalgia (2). If there are 100 kids in her year at her high school, there are probably a few other kids like her. She just may not know who they are. This can be an opportunity to challenge your child to be brave and to be a leader. Other kids may be feeling alone, just like she is, because they are too afraid to speak up and let other people know they are different. She may have an opportunity to inspire other kids and make a positive difference. It is, of course, fair to acknowledge with your child, that not everyone will be accepting of them. All leaders are going to be disliked by some people. To be a leader inherently comes with a certain degree of inevitable backlash. If your child has a social media account, it may be relatable to encourage them that even the most popular social media influencers have to deal with trolls who make negative comments. It may help to highlight some of those individuals for them specifically and how those people deal with negative reactions.
Find Famous Role Models with Disabilities
Famous people are people too. While they are all talented and successful in their various spheres of life, that doesn't mean they haven't had to overcome adversity to attain success.
As kids grow up and seek out people to follow that aren't their parents, helping them find positive role models can change how they see themselves. Finding a famous person who has the same condition they do can be inspiring. It encourages the thought that "If they can do it, maybe I can do it too."
Many celebrities have taken their success as an opportunity to advocate for their diseases and disabilities. A quick Google search might give you a list of people that your child can relate to. Here are a few to get you started:
Fibromyalgia: Lady Gaga and Morgan Freeman
Lupus: Selena Gomez and Nick Cannon
Ehlers Danlos Syndrome: Lena Dunham and Harry Houdini
Postural Orthostatic Tachycardia Syndrome: Halsey and Katie Ledecky
Rheumatoid Arthritis: Lucille Ball and Terry Bradshaw
Migraines: Serena Williams and Ben Affleck
Complex Regional Pain Syndrome: Nicole Kidman and David Beckham
Chronic Fatigue Syndrome/ME: Cher and Justin Bieber
Lyme's Disease: Shania Twain and Ben Stiller
Bell's Palsy: Angelina Jolie and George Clooney
Pelvic Pain/Vaginismus: Megan Trainor
Many of those people have utilized their fame to advocate for their conditions. You may be able to find interviews where they discussed their illness, or perhaps they have written a book.
Search for Peer Support
While having understanding parents is important, peer and sibling support goes a long way too. Do you know anyone else who has the same condition as your child? If the condition is genetic, it may be worth asking around about your nieces and nephews to see if any of them can relate.
Is there a support group available in your area that you can help them connect with other kids their age with the same condition? If your child sees a medical specialist for their condition, they may be able to connect you with some resources. You might even find that your child can make friends with someone that has the same condition while sitting in the waiting room before their appointment with their specialist.
Plant Seeds of Hope
Unfortunately, a short coming of the medical system is that doctors are short on time. They do their job and deliver the news that a person has a medical condition, and the potential options for treatment (or lack thereof). Typically, however, they deliver that news while frantically attempting to document the appointment to meet all the legal requirements and submit their billing to your insurance at the same time. Then they rush out of the room to their next appointment.
That doesn't leave much time to communicate this simple, yet invaluable truth: Just because medicine doesn't have the answers today, doesn't mean that a new discovery won't be made a year from now that yields a new treatment or even a cure. As much as we might like to believe in the scientific method, there are many major medical discoveries that occur by accident.
The discovery of antibiotics, for example, happened because Alexander Fleming left for a vacation without cleaning up his lab bench fully. He returned to find mold growing that was repelling the bacteria in the petri dish (3). Antibiotics would go on to save countless lives in the coming decades and revolutionize medical care for treating bacterial infections.
The point being, is that doctors at that time could not have told their patients "a cure is on the horizon" for their bacterial infections. They had no idea of the breakthrough discovery that was about to occur.
It's important to teach kids to have hope. There are scientists around the world who are studying and searching for new cures and treatments.
Empower Change
For some kids, it may help them feel empowered to influence change. While some organizations, like St. Jude's Children's Hospital, have nationwide fundraising campaigns that your child could participate in, there are other illnesses that get a lot less attention.
Consider reaching out to the national or international advocacy organizations for your child's condition. Many of them fund private research grants to look for treatments and cures for the condition. Your child may be able to gain a sense of control by fundraising for research for a cure.
This may also give them a chance to talk with other people about their condition in a way that is positive, rather than negative. Instead of feeling like they have a negative condition they cannot change, they can show themselves as being an active part of the solution.
If your child isn't ready to talk about their condition with others, fundraising for another group like St. Jude's can still help. When you serve and care for someone else, it helps you to realize that you have value. You are able to help someone else in need, which means that you yourself have something to give.
In closing, they say it takes a village to raise a child. If you have other ideas of how to help kids with chronic illness learn to cope and grow up healthy and strong, feel free to comment down below. For more tips on raising kids with chronic pain, check out our other posts written by parents and healthcare providers who have been there.
Remember, this post is intended for educational purposes and is not a replacement for individual medical advice. If you are interested in being evaluated by a physical therapist for recommendations about your specific situation, call or click to Book Online to set up an appointment.
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