It may be difficult for you to talk to others about your symptoms. However, there are many people who want to give you help and support when you need it.
Different people can help you in different ways. You may find it easy to talk to your parents about the physical part of your illness. On the other hand, you might find it easier to talk to your friends about how it feels to have a chronic illness. It is unlikely that one person can meet all your needs for support. Therefore, it is important for you to develop a support system of people who you can count on when you need them.
Talking to your parents about JIA
Letting your parents know when you need help
When you are feeling ill, it is important to let your family know. There is nothing wrong with asking for help when you need it. Your family can make life easier for you when you aren’t feeling well. It is okay to ask for help.
Letting your parents know when you need space
When you feel better, you will be able to resume your independence and start taking more control of your disease. Your family will want you to stay healthy. However, you might feel that they are too protective of you. Talk to them about it. Your need for independence is an important part of growing up.
Talking to health-care professionals
If your doctor works in a clinic setting, there will be a team of health-care professionals including other doctors, nurses, physiotherapists, occupational therapists, dietitians, social workers and psychiatrists/psychologists who can help you.
Your doctor is your best source of information about JIA. However, other members of your health care team can answer your questions too.
For more information, please see “Talking to your doctor.”
Talking to teachers about JIA
It is important to communicate with your school. Let them know you have JIA and how it is being treated. This can be done through meetings with your teachers, by written notes or by email. Your parents may need to communicate with your teachers about JIA too. Most young people prefer that their parents help in communicating with the school.
For more information, please see “Talking to your teacher.”
Talking to your friends about JIA
Some young people would rather not tell their friends about their JIA. They sometimes worry that their friends may tease them or treat them differently. However, other young people have found that sharing their story with their friends helps them to cope with the stress of having a chronic illness. If you don’t tell your friends about JIA, they won’t be able to help you when you need it.
There are lots of supports available to help you with JIA management. An important source of support is your rheumatology team. For example, the social worker is a great resource to help you find resources for school, work and financial issues related to the cost of medications. Taking your medication is really important. If you’re worried about how much your medication is costing your family, ask to speak with the social worker since they might be able to help with this. They can help you access these resources as well as many others. Your family and trusted friends are other good sources of support. There are also supports in your school, such as guidance counselors, social workers, and psychologists.
Check out the website for Arthritis and Osteoporosis WA.
Many young people with JIA have challenges when they have a job. If you have a job, you may be able to find support at your workplace. If you have a job, or are looking for one, make sure you speak with your employer to find out if they can accommodate for any problems you foresee due to JIA. For example, it may be hard for you to stand for long periods of time. Maybe you can have a chair so that you can sit for periods of time. In the “Looking ahead” section, you will learn about more supports in the workplace.
Advocating for yourself
Do you often say yes when you mean no? Do you hold back your opinion or not stand up for yourself because you are afraid of confrontation or making waves?
Assertiveness means expressing your wishes, opinions and feelings in a clear way while respecting the rights of others. It is not the same as aggressiveness, which does not respect the rights of others. It is also not the same as selfishness, which means only thinking about yourself. Learning to be assertive will help you to gain self-confidence and the respect of others.
You need to know that you are allowed to ask questions whenever you are unsure of something. Your doctors and nurses are there to help you, but they are not mind readers. If you have questions or if anything is bothering you about your treatment, talk to your doctor about exploring other treatment options. You are a person first, and not just a patient; what you want matters. Don’t be afraid to speak up for what matters most for you.
Stories of hope
“At age 10, I found out about my JIA and I was only able to keep it a secret for about three weeks. I had to tell someone! One of my best friends was the first one to know and she was pretty cool about it. She looked it up to learn more about it and she’s really nice about it. It really helps if you don’t have to lie to people about your doctors’ appointments. I was mostly worried about people treating me weird (different) so I told no one. I’m turning 13 this November and all my friends know about my JIA! No one, other than my friends and family, know about it. I’ve been able to handle things just fine but I’m very determined about things so you might be different! If I have any problems, I let one of my teachers know and we work something out even if that means sitting out through gym or not writing all my notes at that moment.”
-Emma, age 13
“In high school, I went on a school trip to Florida. We were spending several days at different theme parks and by the time we got to Walt Disney World, my knees, feet and ankles were taking quite a beating. I had even increased my anti-inflammatory medication but I was still just barely managing to walk even one step without pain. I mentioned my problems to one of the teachers chaperoning the trip. He suggested that he could pay for a wheelchair rental to help me enjoy the long day and minimise walking. At first, I wasn’t so sure because I didn’t want to stick out. But I talked to some of my friends about it and they were really understanding. My friends each took turns pushing me around Walt Disney World in the wheelchair. They even sat in the chair sometimes so they could get a break too. And best of all, we were able to skip the long line-ups for rides because we were in a special line for people with disabilities!”
-Laurie, young adult