When you’re feeling sore

  • Exercise: Sometimes yoga, Pilates, or just a simple walk can make a big difference.
  • Find a distraction: Watch a movie, read a book, play a game—anything to take your mind off the pain.
  • Chill out or warm up : Cold packs and hot water bottles can ease sore muscles and swollen joints depending on how you are feeling.
  • Stay loose: Try a massage if you are feeling stiff.
  • Speak up: Tell people how you are feeling so they will know how they can help.

When you’re taking your medication

  • Take your medication! The bottom line: Either you take your medication, or you will have sore joints. Everyone recognises that taking medication can be difficult; talk to your medical team if you’re struggling with side effects.
  • Some oral medication (e.g., Prednisolone) can leave a funny taste in your mouth. Taking pills with water or juice can help mask the flavour.
  • When you are having an injection:
    • Use a Buzzy or numbing cream to minimise discomfort.
    • Breathing exercises can help you focus and relax.
    • Play music to keep your mind off the injection. Listening to your music in headphones will prevent you from hearing the ‘click’ of an injection pen.
    • If a parent or carer is giving you an injection, don’t let them forget your reward!

When you’re having an infusion

  • Stay warm, relaxed, and hydrated. Drinking plenty of fluids before your appointment will help keep your veins full and make it easier to insert the needle.
  • Be on time. Don’t make the doctors and nurses—or other patients—wait for you.
  • Be prepared to stay a while. Sometimes it takes longer than expected to complete your treatment.
    • Bring a favourite book or a new magazine to help pass the time.
    • Consider bringing some homework along to your appointment.
    • If you plan to watch videos or listen to music on your phone, remember to pack headphones and a charger.
    • Pack something to eat and drink. Bring along gum or mints if you are having a steroid infusion.
    • Bring a blanket or cuddly toy.

When you’re at school

  • Talk regularly with your teachers about how you are feeling. Communication is key to getting the help you need.
  • When you’re ready, tell your friends about your condition. And think about giving a presentation to your class about JIA.
  • If you have a locker, be sure to use it store your books so you don’t have to carry a heavy bag with you all day.
  • If your school has a lift, ask for permission to use it.
  • Get a pass to leave class early if you need extra time to walk to your next class.
  • Talk to your teachers if you need extra time to complete a homework assignment or an exam.
  • If your condition makes it difficult to take notes in class, ask for a copy of the class notes from your teachers.
  • Ask if you can use a computer to complete written assignments.

When you’re needing a hand

  • Remember we are all different, and all good at different things, so try not to compare yourself to everyone else. You are not alone; don’t feel worried that you are.
  • Keep positive and remember that there are lots of other JIA kids going through this too.
  • Do as much as you want to and can do; but also know when you need a rest — and take that rest.
  • Have your dream and work towards it. Remember that JIA is a part of you but it doesn’t stop you.
  • Be honest when you don’t feel great.
  • Find activities and people that make you happy.
  • Hard as it may be, don’t let JIA consume your life.
  • Don’t worry if you find yourself struggling sometimes — talk to friends, family and people you trust.

SNAC Committee Tips: Parents for Parents

  • Empower your child: Involve them as much as possible in decisions about their JIA; teach them about their medication; keep them in the loop. This makes them feel a little bit more in control and encourages independence.
  • Don’t look too far ahead. Deal with the here and now.
  • Research the condition.
  • Don’t try and deal with it yourself. Remember all the support out there: from your child’s GP, specialist nurses, school, and SNAC!
  • Be honest and don’t lie. You’ll never get that trust back.
  • Don’t forget the siblings!
  • Give methotrexate at night to help with nausea. And find ways to distrat your child when giving injections.
  • Keep your kids as active as possible.
  • Try not to focus on the negatives, and don’t let the condition define your child as a person.
  • Try not to feel guilty.
  • Sometimes dads bottle up their emotions; they, too, need to talk.
  • Remember the good times when things are bad.
  • Keep talking to the health professionals involved in your child’s treatment. If you don’t know, just ask!