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Getting the most from your support systems

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.

Accessing supports

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

 

 

Getting the most from JIA treatments

Over the past several sections, you have learned a wide variety of treatment strategies for JIA. You learned about different medications, using relaxation and distraction, and changing any negative thoughts into more positive ones. You also learned about healthy eating and how to maintain a regular exercise program. These strategies are aimed at controlling inflammation, keeping your joints working properly and most importantly, reducing or preventing long-term joint damage. They can also help you to better manage JIA symptoms.

Your role in treatment

You have an important role in making your treatment plan successful. To make the most of your medications, you need to take them regularly and on time. Many people find it difficult to remember to take their medications regularly. In this session, you will learn some tips to help you remember to take your medicine.

It is also important that you get the appropriate help when you need it. If you are experiencing side effects from your medications, or having trouble managing a JIA flare, speak to your rheumatologist. They can help modify your treatment plan.

Common concerns

Below is a list of some of the common concerns young people have mentioned about their JIA:

• Issues at school including taking medications and telling teachers and friends about their JIA

• Physical challenges such as getting around school during a flare and participating in gym

• Remembering to take medications on time

• Issues about body image and self-esteem

• Dealing with the side effects of their medications

If you have concerns like these or any other concerns, speak with someone on your health care team, like the rheumatologist, clinic nurse or social worker. They can help you resolve or manage these issues.

Importance of sticking to your treatment plan

You will be asked to do many things to help control JIA symptoms. These may include taking medications, doing exercises or wearing splints to protect your joints. These treatments often have to be done every day over a long period of time. This is not easy as you may not see the benefits of these treatments right away, and the treatments take time and effort.

The following tips will help you to consistently follow the treatments that your doctor or health-care provider has prescribed.

• Make sure your doctor or health-cacare provider explains what you are supposed to do to control your joint pain and inflammation. Also ask them to tell you how the treatments will help you. Ask for a written plan, or you can develop a system of your own. You can make a journal or binder with all of your medical information and write down what your doctor says while at your appointment. Ask questions if you have any concerns about your treatment plan or if you do not understand what the doctor or nurse is telling you.

• Ask your doctor or health care provider how to avoid negative side effects of treatments, such as an upset stomach with some JIA medications or weight gain with steroid medications. If treatments cause you problems, ask your doctor about other options.

• Work with your doctor or healthc care provider on keeping your treatment plan as simple as possible. One way to do this might be to have medications that need to be taken once or twice a day rather than several times a day.

• Use a reminder system to help you remember to take your treatments. This might involve putting your medications into a pill box organiser at the start of each week. Then put the box in a place that will help you remember to take your medications. A handy location might be on the kitchen counter or next to your toothbrush. If you have a watch with an alarm, you can also use that to remind you when to take your medications, especially if you take them more than once a day.

• Ask your parents or a close friend to encourage you to follow your treatments. Support from others will help you to stay on track. If you find it hard to exercise on a regular basis, see if you can find a few friends to do something with at a local gym or recreation centre.

• Reward yourself for taking your treatments. Try to do something you enjoy after taking medications or exercising.

• Ask your parents, doctor or health-care provider how you can overcome barriers to following your treatments. Ask yourself, “What gets in the way of me following my treatments and how can I solve this problem?”

• If you think your treatments are not helping, talk to your doctor or health care provider. They can help you with your concerns and decisions about your treatment.

Do everything you can to take your medications regularly and follow your other therapies. It may reduce the number of tests and other treatments you would otherwise have to undergo.

 

Dealing with bullying

Bullying is repeated, aggressive behaviour towards one person from another person or a group of other people. Bullying is hurtful. It can occur in many different forms. Bullies can hurt someone physically, verbally, socially (through exclusion or spreading rumours) or electronically (see cyber bullying below).

Here are some things to try and some things to remember if you’re being harassed and want to stop it.

• Talk to someone you trust, such as your parents, a friend, a teacher or a counsellor. They can help support you and find ways to stop the bullying. If you talk to someone and they can’t help, then talk to someone else. Don’t give up! Bullying is a difficult problem and often many people need to get involved for it to stop.

• Act confident, hold your head up, make eye contact and walk confidently.

• Stay close to friends you can trust to stick up for you.

• Avoid areas where bullying takes place.

• Ignore the bullying and walk away. Make them think you don’t care. This can also be very hard to do. If they know they’re upsetting you, they’ll do it more, so use all your acting skills to pretend it doesn’t bother you.

• Set some time aside to do things that help you feel good about yourself.

Cyber bullying

Social media opens so many ways to connect with people all around the world, which is amazing. You can make friends with someone in your own neighbourhood or half way across the planet. However, communicating with people online – everything from chatting one-on-one through your phone to posting anonymously on a website – also has risks.

Some people can be very unkind when communicating through a screen. Sometimes it may not be an intentionally nasty remark – more like something sent in fun.

What counts as cyber bulling?

A single incident, such as a once-off offensive text or direct message, is not defined as bullying, even if someone is being mean or the message is upsetting.

However, putting a once-off offensive or hurtful public message, image or statement on a social media site or other public forum where that message, image or statement can be viewed and/or repeated by other people is seen as bullying.

So, it is not just the person who originally posts the message that is a bully. Sharing or commenting on content on social networking sites or joining, subscribing to or following online sources of content that are intended to humiliate or harm individuals can also be considered bullying behaviour. And once something is posted publicly you lose control over who sees it and it could stay online forever!

Paying attention to what you say online

It is important to try to think about how other people might receive your messages online. Through a screen, you cannot know if what you write is being viewed as funny or cruel. Nor can you see how what you are texting affects the person reading it. So, try to be kind online and celebrate everyone’s uniqueness instead of putting others down for being different.

How to respond to cyberbullying

Here are some things to try and some things to remember if you’re being harassed online and want to stop it.

• Don’t respond or reply to messages that harass or annoy you, even though you may really want to. Getting a reaction is exactly what the sender wants. They want to know that they have got you worried or upset. They are trying to mess with your head, so don’t give them that pleasure. If you respond with an even nastier message it makes them think that they really got to you and that is just what they want. They might even complain about you!

• Tell someone you trust. Talking to your parents, friends or someone else you trust is usually the first step in dealing with any issue. In the case of school-related bullying messages, also talk to a teacher you trust or your guidance counsellor.

  • There are also people you can talk to if you need to speak to someone straight away: Kids Helpline: 1800 551 800 (24 hours a day)

• Report offensive content to the people who can do something about it. Responsible websites and mobile phone operators provide ways for you to report things like bullying content or other nasty online material.

• Take a screenshot (see instructions) of any bullying messages. You don’t need to read them again, but you should keep a record, as you will need to have evidence to get help from others. Teachers, principals, website owners, mobile phone companies and the police will all want to see evidence before they can take any action to help you.

• Block the sender – you don’t need to put up with someone harassing you. If you are getting upsetting messages online, you can usually block the person from your social media or app accounts simply by clicking the block button.