Having a chronic condition is a really big learning curve!

There is a lot of trial and error to work out how to adapt to different situations and what works best for you. Sometimes, it can feel like you have just got the hang of something, and then it all changes again, like when you move from primary school to high school or have a big flare-up.

Sharing the tips, tricks and things you have learnt along the way lets other children and young people in similar situations find what works for them quicker and can give you a place to look when things change for you.

Here are some top tips from our Young Ambassadors that you might find helpful.

Top tips for getting support 

• Connect with others

  It helps to talk to someone about how you feel because a chronic condition can be very lonely and stressful. Meeting other people in similar situations can make you feel less alone, and it can be easier to talk about your chronic condition with someone who 'gets it'. It helps to be there for others who are going through the same things too. If you need help expressing yourself, try some therapeutic art activities to open communication. 

• Lean on others

  Tell your friends what they can do to help when you have a flare up or are in a lot of pain. Use things such as communication cards to tell your teachers when you need extra help. Educating others on what they can do beforehand and picking out things that will help means you’ll have a support system in place when it’s needed. 

• Communicate without words

  It can be difficult to tell your friends about your condition or how you are feeling. Try drawing a picture or using an object to describe how you are feeling. You can also use other resources that explain situations similar to your own.  

What advice would you give to other children or young people with a chronic condition? Get in touch and we will share it too!  

Top tips for hospital stays  

These top tips were written by Young Ambassador William.  

• Be brave and ask for stickers; they have loads and often forget to give them to you. 
• Be brave and ask if you don't want a certain person caring for you.  
• Save a boiled sweet for when you are feeling most anxious. 
• It is okay to ask for your favourite nurse or doctor.  
• Try not to look when they take blood; think about what you want for your birthday or another celebration instead. 
• Wear a tracksuit with zips to avoid having to take your trousers off.
• You can bring your own pillow. 
• You can ask for fewer people in your consulting room.  

Volunteers at The LUNA Project (one of our partners) have written a blog about their experiences and advice for hospital stays as three university students living away from home: https://www.thelunaproject.org.uk/post/managing-a-hospital-stay