Empowermeent
Your Voice Matters: Taking the Lead in Your Healthcare
You’re not “just a patient” — you’re part of your healthcare team. Doctors, nurses, and parents have expertise, but you’re the expert on you.
Teens want to have a voice in conversations about their body and healthcare journey. If you’re a youth who wants to feel more confident, informed and in control of your care, speaking up can help. Sharing how you feel with your healthcare team helps make sure your care fits you and your needs.
Your Voice is Important
- You deserve to understand what’s happening with your health.
- Doctors want your input, they can’t know what it feels like unless you tell them.
- Being involved builds trust and helps make care plans that work for you.
- You know yourself best, what feels right, what hurts, what’s scary, what helps and that’s all information your healthcare team needs.
- When you share your thoughts, it helps them make better plans with you, not for you.
- Speaking up helps you feel more in control, reduces stress, and makes sure your care matches what you actually need.
How to Prepare Before Your Appointment
- Ask to have a few minutes alone with your doctor if you’d like to talk privately.
- Decide beforehand if bringing a friend, sibling, or parent would make you more comfortable.
- Keep a symptom journal or notes in your phone: “What hurts, when it happens, what helps.”It’s easier to explain how you feel when you have it written down.
- Write down 2–3 questions ahead of time (or use the notes app on your phone).
Asking Questions and Speaking Up
- “Can you explain that in a way I’ll understand?”
- “I’m nervous about ___ can we talk about it first?”
- “Can I have a few minutes to think before deciding?”
- “I want to know what my options are.”
- “What are the side effects of this medicine?”
- “Is there anything I can do at home to feel better?”
After your appointment
- Review what was discussed and make notes of things you don’t understand yet.
- Schedule a follow-up if you still have questions.
- Share updates with a parent, friend, or support person if it helps you remember important information.
Taking the lead in your healthcare doesn’t mean you have to do it perfectly. Even asking one question or sharing one concern is a big step toward feeling more in control and confident. You deserve to understand what’s happening with your body and to be part of every decision. Next time you have an appointment, try asking one question, big or small. That’s a step toward taking the lead in your care.
Breathing Easier Together: A Camp Fromaway Story
Each year, Upopolis runs Camp Fromaway, a virtual summer camp for children living with cystic fibrosis (CF). CF is a genetic condition that causes the body to produce thick, sticky mucus—especially in the lungs and digestive system—leading to serious health complications.
While treatments have improved, kids with CF must manage daily medications, physical therapy, and frequent medical appointments. Due to cross-infection risks, children with CF can’t safely spend time together in person, making virtual spaces like Camp Fromaway vital for connection, support, and fun.
Below, campers share their thoughts and experiences from Camp Fromaway last summer:
Q: How does having CF impact your life?
“CF affects my life in many ways. For example, every morning I do my physio (also called PEP). I do six rounds twice a day, which takes about 15 minutes each time. It’s even harder when I wake up late!”
“CF impacts my life daily—it’s a constant companion. Treatments, meds, and appointments shape my routine, often limiting spontaneity. But it’s also taught me resilience and made me passionate about advocacy. I live each day fighting not just for myself, but for all CFers. Though it’s difficult, it’s made me stronger, determined, and part of a global community. It defines me—not just as someone with CF, but as a survivor and advocate.”
Q: What was the most fun camp activity?
“My favorite activity wasn’t from last year, but the year before—when we received daily snacks! I really enjoyed that and hope to see it come back in future summers.”
Q: What was it like talking to other campers with CF?
“I enjoyed talking to others with CF because I didn’t feel like the only one. It was comforting to hear about other people’s experiences and know that I’m not alone.”
Q: What did you take away from Camp Fromaway last summer?
“One of the greatest things I took from Camp Fromaway was a sense of belonging, empowerment, and acceptance. Life with CF can be isolating, but at camp, I was fully understood. People got my struggles and my successes. It strengthened my advocacy passion—hearing different CF stories was so inspiring. Camp wasn’t just a summer break; it was a reminder that we’re stronger together, even from afar.”
“Last summer, I learned that even though we all have CF, it affects each of us differently. Hearing others’ stories helped me understand CF better and feel less alone.”
Q: Did camp give you new tools or tips to help manage CF better?
“Yes! I learned how to make paper lungs to see how they work, how to calm my lungs, and different breathing techniques to improve my lung capacity.”
Q: Do you plan to go back to camp next year?
“Definitely! I’m already counting down the days until I get to go to Camp Fromaway again next year! It was such a supportive and positive experience, and the connections I made were invaluable. Being around other people who understand CF on that personal level, and who also share my passion for advocacy, was invigorating. My plan for next year is to build on the connections that I made and help bring even more attention to the issues that we have as a CF community. It’s something that I wouldn’t trade for the world.”
Q: Why is having a community important when you have CF?
“Having a community when you have cystic fibrosis is just necessary—emotionally, mentally, and politically. CF is isolating, and community fills that gap. It’s where we don’t have to explain ourselves, and where shared experience becomes instant common ground. That kind of bond heals in a way medicine can’t. And together, we’re powerful—we fight for access, awareness, and policy change. Alone the fight is hard. Together, we’re a force. In a world that forgets orphan diseases, the CF family means we’re never alone.”
Q: If there was one thing you wanted everyone to understand about CF, what would that be?
“CF isn’t just a lung disease—it affects nearly all organs: pancreas, liver, intestines, reproductive system. It’s not just treatments and doctor visits; it’s a full-body battle. But we’re not our disease. We have hopes, dreams, and full lives. We’re working, studying, and fighting for change. Understanding our complexity and strength is essential for the next stage of advocacy.”
This year Camp Fromaway will be held from July 14th-18th!To register please click this link: https://forms.gle/J4trQFAEr8rEspXA6.
Dear 12-year-old Lily,
Dear 12 Year-old Lily,
TAKE A DEEP BREATH. I understand that things might feel overwhelming right now, but I want you to know that everything will be okay.
Today is an important day as you pick up your back brace. I can tell you from my own experience—wearing a back brace as a middle schooler and through many activities like summer camps, sleepovers, and vacations—that it will be okay. When you first went to the scoliosis clinic and saw the bulky, plastic brace, it probably made you feel unsure or nervous. Some questions that may have gone through your head like; “How will I play sports? What will my friends think? How will I sleep with the brace on?” It’s natural to have these thoughts, but I’m here to offer four tips that I wish someone had shared with me when I first got my back brace.
1. Be Kind to Yourself
Your brace and you are about to become very close friends. It may take time to get used to, so it’s important to try to be patient with yourself. Use tools like positive self-talk to help when things feel challenging. One great tool is the STOP breathing technique: Stop, take a breath, Observe how you’re feeling, and then Proceed. This can be really helpful when you feel overwhelmed, like when a classmate asks about your brace, and you’re not sure what to say. Replace negative thoughts with positive ones, like “I can do this” or “I’m doing my best.” And find things that comfort you, like reading or drawing, to help take your mind off any discomfort. Most importantly, remember: your back brace doesn’t stop you from doing the things you enjoy—it might just mean doing them in a new way. Let it be your superpower and keep doing what you love. Always be kind to yourself!
- Let Others be Curious
It’s okay for people to be curious. If someone asks questions, or even makes a comment, it’s usually because they don’t understand why you’re wearing the brace. Don’t be afraid to teach them a little about scoliosis and share why the brace is so important for your health. Educating others can help them be more supportive and kind.
- Embrace Your Strength
Be proud of who you are! I know I was nervous at first, like when I didn’t want to wear a swimsuit in front of others because of my brace. I worried about how my spine curve looked and whether others would notice. But in reality, the only person who focused on these things the most, was me. What others noticed was my confidence and how I carried myself. It’s okay to feel unsure sometimes—those feelings are totally normal. But over time, I learned to see my brace as my armor, and my scoliosis as something that makes me unique. I am empowered by my scoliosis, and you can be too!
- You’re Not Alone
It might feel like you’re the only one wearing a back brace, but you are not alone. It’s okay to feel all kinds of emotions, and it’s important to talk about them with the people who care about you. Your family, friends, and loved ones want to support you, but they can’t help if they don’t know what you need. Also, there are many other people who understand exactly what you’re going through. Seek out groups or communities, like the Scoliosis Common Grounds Group, where you can connect with others in similar situations. Knowing others are there to support you can make the journey a little easier.
Looking back at my own experience with a back brace, I now see it as something that helped me grow stronger and become the person I am today. So, 12-year-old Lily, get ready! The next few years are going to be wonderful.
Love,
20-year-old Lily
Our next Scoliosis Common Grounds Programming runs March 2 & 3rd at 7PM EST. Register here