Being diagnosed with a serious medical condition is likely one of the biggest, scariest things to happen to you. It is totally normal to experience a range of emotions. Remember, your illness will affect you, but it doesn’t define you. You are still the same person, and your medical condition is just one part of your life. Adjusting may seem overwhelming, but there are things you can do to make it easier and there are resources to help.
Have a consistent routine
Set a daily schedule that works for you and stick to it as much as possible. This will help you feel more “normal” and give you a sense of control over your day.
- Create consistent daily routines, including regular mealtimes and the time you get up and go to sleep. Try to maintain routines, whether you are inpatient or outpatient.
- Review your daily clinic schedule, and then set times for other activities such as school, time with friends, rest, or exercise.
Get healthy sleep
Sleep is important for physical and mental health. Create a healthy sleep environment, schedule, and routine.
- Go to bed around the same time each night and wake up around the same time each morning (even on weekends).
- Turn off screens at least 1 hour before bedtime. Bright light from devices can keep you awake.
- Use your bed for sleep only. Train yourself to think of your bed as a place to sleep. Don’t use your bed as a place to play video games, do homework, or hang out during the day.
- Increase exposure to sunlight. Spend time outside during the day and open the blinds or curtains. This helps re-set your body to sleep better at night.
- Avoid caffeine in energy drinks, coffee, or soft drinks, especially in the afternoon and evening.
- Avoid intense exercise within 2 to 3 hours before bedtime.
For more information: Together Teens & 20s—Get Your Sleep for Good Health
Find healthy ways to manage emotions
You may have a range of emotions — shock, fear, uncertainty, guilt, grief, jealousy, anger, sadness, worry — these are all normal. Try to name what you are feeling and allow yourself to feel that emotion. Then, use coping strategies to help you manage that specific feeling.
- Express your emotions in creative ways such as writing, drawing, photography, or music.
- Share your feelings with people you trust. Look to family members, friends, your health care team, or other patients for support. Share your thoughts about struggles about diagnosis and treatment, including changes in your physical appearance.
- Do activities you enjoy.
- Use humor – try to find something to make you laugh each day.
- Stay active – go for a walk, practice yoga, or do other physical activities regularly.
- Use coping strategies that have helped you in the past.
For more information: Together Teens & 20s—Take Care of your Emotional Health
Maintain relationships and get support
It’s important to have a support system to help you through the ups and downs. You can try connecting with other AYA patients who are going through something similar.
- Let your friends and family know whether you want to talk about your illness. Tell them what you want them to know.
- Ask your friends to keep texting, messaging, and connecting with you on social media, even if you don’t respond right away.
- Talk about normal things and spend time hanging out with friends when possible.
- If you’re in a romantic relationship, find ways to do something special for each other or plan time to be together.
- Know that relationships may change. You may feel closer to certain people or have trouble staying connected with others. Your interest in dating may also change after diagnosis and during or after treatment.
- Try to be honest with your friends and family about what you need and how they can help.
Communicate with your medical team
You may have a lot of questions about your illness, treatment, and how this will affect you now and in the future. It’s important to have open, honest communication with your care team. Let your family and medical team know how involved you would like to be in medical conversations.
- Keep a list of questions and things you want to discuss with your care team. Write down their answers.
- It’s okay to ask if you can speak to your medical providers privately. Speak to medical team members with whom you feel most comfortable.
- Don’t be afraid to ask people to repeat information or to explain things in a different way to make sure you understand.
Follow instructions for medicines and other treatments
It’ s very important to take medicines at the correct dose and at the right time. Ask questions and make sure you understand the medical team’s instructions. You can request written instructions if needed. It helps to know to expect, how medicines and treatments might make you feel, and any side effects.
- Use a pill box to help manage your medications.
- Use written or electronic calendars and reminders for medications and other medical tasks. You can set reminders in your phone or use an app. Examples of apps to manage medicines include My Med Schedule, Med Coach Medication Reminder, Mango Health, MediSafe Meds, and Pill Reminder.
- If a friend or family member helps you with your medical care, decide who will help you and what tasks they will do. For example, have your parent call in your refills and help with filling your pill box, while you set reminders in your phone.
- Identify anything that might make you miss medicines or treatments or stop taking them altogether. Discuss how to overcome these issues with your medical team.
- If you notice any side effects, keep notes so you can talk to your health care team and let them know about any problems.
Manage your pain
You may experience pain and discomfort during your illness. There are several things you can do to reduce pain and be more comfortable. If you have pain, please let your care team know.
- Use distraction to shift your mind away from the pain and onto something more pleasant.
- Try deep breathing and other relaxation strategies to reduce tension and lessen pain.
- Quiet the mind and body using mindfulness exercises or meditation.
- Use positive self-statements, such as “I can do this to help me feel better” or “I know this pain won’t last forever”.
- If your pain gets worse, lasts longer than usual, or interferes with your sleep or daily activities, ask your medical team about pain management options.