Empowermeent
When Someone You Love Is Sick: It’s Okay to Have Feelings Too
When someone in your family is sick, a lot can change. Routines might look different, plans may be put on hold, and you might find yourself worrying about what comes next. Whether it’s your parent, grandparent or sibling who is unwell, you may be experiencing feelings that are difficult to explain and that’s okay.
Sometimes, it can feel like everyone’s focus is on the person who is sick. You might try to be helpful, keep things to yourself, or act like everything is fine because you don’t want to add more stress to your family. Maybe you aren’t even sure how you feel.
Whatever you’re feeling, there’s something important to remember: you matter, too.
It’s Okay to Feel More Than One Thing
When someone you love is sick, your feelings can be complicated. You might feel worried about their health one moment and frustrated about how much your life has changed the next. You might feel sad, confused, angry, guilty, or even unsure of what you’re supposed to feel.
Maybe you miss spending time with your parent because they have appointments or need more rest. Maybe your sibling is getting extra attention, and you feel like your own needs are being put on the back burner. Or maybe you feel worried about the future but don’t know who to talk to about it. You might even feel guilty for being frustrated or wanting things to go back to how they were before.
All of these feelings can exist alongside how much you love someone. You can love your family and still feel frustrated. You can understand why things have changed and still wish they hadn’t. You can feel grateful for the time you have together and still feel sad about what you’re going through. Having complicated feelings doesn’t make you selfish, ungrateful, or a bad family member. It makes you human.
You Don’t Have to Be Strong All the Time
Sometimes, when someone in your family is sick, you might feel pressure to be the strong one. You may try not to cry, avoid talking about your worries, or tell everyone you’re fine even when you’re having a difficult day. Maybe you don’t want to upset your parent. Maybe you think your sibling already has enough to deal with. Or maybe you’re used to being the person everyone can count on. But being strong doesn’t mean pretending you’re okay all the time.
You are allowed to have hard days. You’re allowed to ask questions, express your worries, cry when you need to, or admit that you don’t know how you feel. You don’t have to have the right words for everything you’re experiencing.And remember, you are not responsible for fixing everything or making everything okay. It’s okay to let trusted adults support you, too.
It’s Okay to Have Fun, Too
Have you ever laughed with your friends, enjoyed a day out, or gotten excited about something and then suddenly felt guilty because someone you love is sick? You might wonder whether it’s okay to have fun when things at home are difficult. The answer is yes.
You can care deeply about someone and still enjoy your life. You can go to school, spend time with friends, play your favourite game, celebrate something exciting, or look forward to the weekend. Taking a break from worrying doesn’t mean you’ve forgotten about your loved one. Finding moments of happiness doesn’t make their situation any less important. It’s okay to have moments that are just for you. You deserve laughter, connection, new experiences, and things to look forward to even when life feels uncertain.
Finding Little Ways to Cope
You might not be able to change what’s happening with your loved one’s health, and that uncertainty can be difficult. But there are small things you can do to help yourself through challenging moments.
Here are a few ideas to try:
- Talk to someone you trust. This could be a friend, family member, teacher, school counsellor, or another trusted adult. You don’t have to keep everything to yourself.
- Find a way to express your feelings. Try journaling, drawing, listening to music, or writing down what’s on your mind. You don’t have to share it with anyone unless you want to.
- Keep some familiar routines. When life feels unpredictable, little things like your favourite show, a regular walk, or time with friends can provide a sense of normalcy.
- Ask questions when you need information. If you’re worried or confused about what’s happening, you can ask a trusted adult to help explain things in a way that makes sense to you.
- Give yourself permission to take a break. It’s okay to spend time doing something you enjoy, even if you can’t stop thinking about what’s happening completely.
- Let people know what you need. Sometimes, that might mean asking for extra time with a parent, wanting someone to listen, or simply saying, “I’m having a hard day.”
Not every coping strategy will work every time, and that’s okay. Finding what helps you is a process. Some days, talking might help. Other days, you might just want a little quiet time. You don’t need to figure it all out at once.
You Deserve Support, Too
When someone you love is sick, it can sometimes feel difficult to ask for attention or support because you know they’re going through something challenging themselves. But your feelings don’t become less important because someone else is unwell. You deserve people who listen to you, take your worries seriously, and make space for what you’re experiencing. You deserve to ask for help when things feel overwhelming, and you don’t have to wait until things become really difficult to reach out.
If you aren’t sure how to start a conversation, you could try saying:
- “I’ve been worrying a lot lately, and I think I need someone to talk to.”
- “I know things are hard right now, but I’ve been having a hard time, too.”
- “Sometimes I feel like I should be okay, but I’m not really sure how I feel.”
- “Could we spend some time together? I’ve been missing you.”
- “I don’t need you to fix anything. I just need someone to listen.”
You don’t have to say everything perfectly. Sometimes, starting the conversation is enough. And if the first person you talk to isn’t able to give you the support you need, it’s okay to reach out to another trusted adult.
A Little Reminder for You
If someone you love is sick, you might not always know what to feel, what to say, or what will happen next. There may be days when you feel okay and other days when everything feels a little harder. You don’t have to feel the same way every day. You don’t have to be positive all the time. And you don’t have to carry everything on your own. You can love someone and feel frustrated. You can be worried and still laugh with your friends. You can want to help your family and still need help yourself.
Someone you love may be going through something difficult, but you are going through something, too. Your feelings matter, your needs matter, and you deserve support.
Take a Moment for Yourself
If you’re comfortable, take a few minutes to reflect on one or more of these questions:
- What’s one feeling I’ve been experiencing lately that I haven’t talked about?
- What’s something that helps me feel a little more like myself?
- Who is someone I feel comfortable talking to when things get difficult?
- What’s one thing I wish others understood about my experience?
This is simply a chance to check in with yourself and remember that your feelings deserve space, too. You don’t have to go through it alone.
Changing Seasons, Changing Pace: Finding Your Fall Flow
There is something special about October. Trees turn gold, red and yellow, the air gets crisp, and the world naturally invites us to slow down. But while nature is easing into a quieter season, your schedule might be doing the exact opposite. Between school assignments, staying connected with friends, and managing medical appointments, treatment schedules, or health changes, autumn can quickly feel overwhelming.
If you’re feeling the weight of a busy calendar, remember this: you don’t have to move at the same speed as everyone else to enjoy the season. Here’s how you can honor your health, protect your energy, and still savor the magic of fall.
1.Match Your Pace to Your Season
Nature doesn’t bloom all year long, and you aren’t meant to constantly run at full
speed, either. School deadlines, appointments, new routines, hospital visits or
managing different symptoms, can take lots of physical and emotional energy.
–Give Yourself Credit: Recognize that establishing a new school routine,
socializing with friends and managing your health can be a delicate
balance. If an appointment takes most of your strength, it is completely
valid to rest for the remainder of the day.
–Listen to Your Body’s Signals: Trouble focusing, fatigue and or feeling
easily frustrated are signs that your system may need a pause. Resting isn’t
a failure—it’s an essential part of your care
2.Create Low-Pressure Traditions
Fall is packed with social expectations, but you can redesign traditions to
fit your comfort level:
–Swap Big Crowds for Cozy Spaces: If a busy fall event feels exhausting,
bring the fall vibe to you. Decorate your room, bake seasonal treats, or host
a low-key scary movie night with a close friend.
–Keep Connection Flexible: True friends understand that your health
comes first. It’s okay to join a group chat, hop on a video call, or hang out
online when going out in person isn’t in the cards.
-The “Exit Strategy”: When you do attend events, give yourself an easy exit
plan beforehand. Knowing you can leave whenever you need to, takes
away a lot of the pressure.
3.Build Your Personal “Fall Comfort Kit”
When days are filled with long school hours, homework, waiting for
appointments, or different commitments, having a portable “Comfort Kit” can
make a hard day feel much softer:
-Sensory Comforts: Pack a cozy sweater, your favorite lip balm, or a soft
blanket for appointment days.
-Mindful Distractions: Create a go to playlist, audiobooks, or have a pocket
journal ready to help you decompress between commitments.
-Small Rituals: Find one tiny thing each day that grounds you—like
watching the leaves fall outside your window or sipping a warm drink
after a long day.
What is one small way you bring comfort to your routine when school and health commitments start to pile up? Enjoy finding your fall flow. 🙂
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