This is the age when children are forming new identity as young adults. They are also grappling with expectations and plans for their future. And right in the middle of this very formative life stage, a villain enters the scene who steals physical vitality, saps their energy, and dictates how they can move through the world.
Don’t underestimate the impact on their psyche. It’s equally important to remember that this is the time when your role as parent shifts from being Advisor to Consultant. Their self-direction and self-determination is of vital importance to their development and yet, they’re also reliant upon you to help them navigate this very challenging healthcare scene. This is difficult for any person to navigate, let alone the young or uninitiated. Plus, when we take a Functional Medicine approach to autoimmunity – where we seek causes and healing over pharmaceutical-based symptom management – we’re asking our teen to make changes to diet and lifestyle, which can be challenging unto themselves.
How can you help them face and manage their reality without taking over, nor robbing them of what vital self-direction they’ve got left in the face of serious, chronic disease? Meet them where they are. This is a time to amp up your skills in family dynamics.
1. Listen to what they need. Ask your teen how they’re feeling–and let them tell you. Be prepared for some anger to come with this expression – especially if there are some steroids or other medications on board that can affect their mood. Don’t engage with it; don’t defend yourself; don’t try to fix it. Listen. Give them your full attention. And, try to do this when they need to talk – which is not necessarily when it’s convenient for you.
2. Validate their feelings. If the conversation steers to things they wish they could change that are beyond both your and their control, validate their feelings. In fact, validating their feelings is a must at any time, not just to give them the support that they need, but to maintain your role as ally. “That must be very hard for you,” and, even, “That sucks.“ Sympathize. This is tough stuff. It just is. Don’t rush into, “But at least — [fill in the blank with some bright side you can think of]“ Polyanna-ish contradictions about what’s good among what might be feeling like the rubble of their lives. That may be a perspective they can arrive at once they’ve released their emotion but, be sure to first validate their feelings, or they’ll feel like you’re not hearing them.
3. Ask how you can help. When your teen is done saying what they need to say, ask how you can help. Don’t assume you already know. And, don’t assume you already know what’s best for them. As at any age, it’s important to take the whole person into account. Now, more than ever, you may have to balance their spirit, their need for social interaction, their need for autonomy, against your need to keep them safe. Ask what’s important to them.
4. Come up with a strategy to meet their needs. This is where your creative thinking can come in. Is it important to them to go out to eat with their friends? Is that at a place that’s not serving food you know is safe for them? What can you do about that? The answer is not automatically to deny them access. Look into ways to make it safe for them. Do they eat the burger without the bun? Do they need a digestive enzyme to eat select foods there? If you and they look at the menu together, can you arrive at menu selections that could work? Remind them that, at the end of the day, others are far too self-absorbed to be really thinking about what they’re eating. If they’re at the same restaurant together and they find ways to order foods that don’t make a spectacle of themselves, they can be there, be present, and participate. That may be what’s most important to them. Or is it a sport that’s what’s most important to them, and they can’t play at the moment? Is there another role they can take on to support the team and stay with their peers? Can the coach help brainstorm ideas? Or if they’re too ill to go out, or peers are having difficulty adjusting to your teen’s needs, is there another activity that could work? A less physically demanding activity or a safe online activity, such as gaming? Is there another topic altogether that they want to pursue? What can you do to help make that happen? Don’t worry about “indulging” your teen; they’re already grappling with more “reality” than most adults can handle. Your goal here is to keep their spirit alive.
5. Communicate fairly. If your and your teen’s perspectives about what should happen are quite different, use “I” statements to tell them how you feel. “I’m concerned that you won’t be safe in that environment,” is a lot less contentious than the Dictator’s “No.” Or, worse, the Shame Game of “You need to grow up and face reality.” They’re already being forced into premature maturity by their illness. The call to action for us parents is to rise in maturity ourselves. The rules of fair communication apply here more than ever. Own your own stuff.
6. Happiness is not the goal. Remember that sadness, grief, anger, and other emotions are every bit a part of the human experience as is happiness and joy. Even more relevant here is the fact that there is no arrival point in this situation. The outcome you’re seeking is not “Everything is OK now.” It’s not going to be. “Different now, and we’re coping” equals success. Don’t expect things to feel good all the time. And equally important, don’t judge that NOT feeling good is failure. This is a process. It’s dynamic. Walking through pain is just that: a journey. If your teen is expressing signs of serious depression, however, seek professional help from a licensed counselor who has experience not just with their age group, but with chronic illness.
7. Get help when you need it. Remember, you’re grappling with your own grief about what’s happening to your child. Seek help to move through your own emotions so that you can be clear-headed and able to respond appropriately to your teen. Your teen may not, or may not be able to, rise to the call of what this illness asks of them right now, or do so all at once; they’ll need time, and you need time, too. The guidance of a trusted professional counselor – not the same counselor that you’ve hired for them – can be an important tool in your toolbox for regaining some hope and sense of self control.
Joy Cutrone, Wellness & Certified AIP Coach and Functional Medicine Certified Health Coach Candidate, is the founder of The Autoimmune Families Community. She leverages decades of experience as a client-centric, research-driven business professional with a rare persistence and attention to detail together with coaching skills to uncover, pursue, and coach a healing-based approach to autoimmune disease. Functional medicine was not known to her in our early journey, and she now makes it her mission to help speed the path of inquiry for people who want to find the root causes of chronic illness and improve overall quality of life.
