JIA not only affects your teenager; JIA also impacts your entire family. The effects on your family can vary depending on the type of JIA your teenager has, the severity of their symptoms, treatments and frequency of flare-ups. The level of impact JIA has on the family can also be affected by the coping styles of parents and individual family members. You might find yourself spending extra time helping your teenager with JIA, especially during a flare. This shortens the amount of time you spend with other family members.
Change of plans
Your plans for family activities may need to be changed or cancelled with little notice because of a flare-up in your teenager’s JIA. You might want to have a “Plan A,” “Plan B,” and sometimes even a “Plan C” for your family activities. This builds flexibility into your plans. You can call it “flexible planning.” It ensures that fun family activities can still take place.
For example, you and your family decide to plan for a family outing to an amusement park (Plan A). You would like to make it a surprise but realize that it would be better for Chris, your teenager with JIA, to know about it in advance to be able to plan for it. You make the following strategy in advance of the big day: Before plans are made and announced to the family, research is done to determine if the amusement park is accessible. If it is accessible, on the day of the excursion, Chris will decide by 9:00 am whether or not he is up to going.
If Chris is having a JIA flare or a hard day, then a backup plan (Plan B) is in place: the family can go to the amusement park together and accessible equipment will be rented at the park if Chris is finding it difficult to walk. This way he can still participate in the day and everyone can go and enjoy together.
If Chris feels he is in too much pain to attend, then Plan C is in place: an adult is identified — one parent, relative or other support — who will look after Chris and do at-home activities with him so that he can still have fun while the rest of the family is away. That way everyone can go and enjoy themselves without a long and difficult last-minute discussion of Chris’s symptoms.
Strategies to manage the impact of JIA on your family
There are several strategies that can help you and your family cope with the negative impact of JIA.
Learn about JIA in young people
Learn as much as you can about your teenager’s JIA. Don’t try to do this all at once when your teenager is first diagnosed since this can be overwhelming. Rather, start to learn about JIA gradually. Ask your teenager’s health-care team for any written information that they can give you. For really helpful information, check out the 12 sessions that your teenager is working through.
Write down questions as you think of them. Get them out of your head and onto paper. This makes things less overwhelming. Make sure to ask all your questions as often as you need to, in order to understand what’s happening with your teenager’s health.
Look for information on credible web sites. If you find information that looks really good (such as a ‘cure’ for JIA) or information that is frightening to read, please share that information with your teenager’s health-care team. They can tell you whether or not the information is valid and if it applies to your teenager.
Write down your questions and any information that you find, so that you can review it with your teenager’s health-care team. Figure out a way to keep track of the information and appointments related to your teenager’s care. To help keep yourself on top of things, you might want to keep all this information in a binder. Having information available in an organized way will help cut down on your stress. It can help reduce the chaos that can be associated with chronic illness and ongoing treatment.
Take care of yourself
Most parents put their teenager’s needs and the needs of others well before their own. This is natural in times of crisis. However, you are important too.
Take care of your own physical, mental and spiritual needs. Not taking care of yourself can lead to physical and mental health problems. This can then make it harder for you to care for your teenager and for the rest of your family. This can have a negative effect on your teenager in the long run.
Teach your teenager the value of self-care by modelling it yourself. Remember, your teen looks to you as a role-model to learn how to take care of themselves.
If you are finding it impossible to meet both your needs and your family’s needs, find help. Talk to a close friend and accept offers of support. If needed, ask your doctor for a referral to a counsellor.
Remember: take care of yourself so that you can keep your teenager and family healthy!
Consider your parenting style
Many parents make some changes in the way that they parent their teenager with JIA. Some of these changes may lead to increased communication and support for the teenager. Other changes in parenting may not support the teenager’s ability to cope with JIA as well. For example, parents may lower their expectations of what their teenager can do. They may then have trouble encouraging better self-management in their teenager. Your teenager may take on an “I can’t” mentality. Parents can also feel guilty about the new demands that their teenager with JIA has in their life; they may make exceptions for things like chores in the house.
Consider the overall short- and long-term impact of JIA on your parenting style. For example, in the short term, if your teen is dealing with a flare, your parenting style may involve changing expectations for what your teenager can do that day. However, in the long term, you need to use your parenting style to show your teenager that you believe that they are capable of doing most things.
Think of what kind of adult you want your teenager to become. Keep that in mind as you consider your parenting style. Maintain consistency and communication. These are two important strategies for parenting a teenager with a chronic illness.
If you have concerns about your parenting style as it relates to your teenager’s JIA, speak to someone you trust. You can also ask your doctor to refer you to a counsellor.
Take it one day at a time
During a flare-up or times of stress, it is easy to feel overwhelmed. Take things one day at a time.
Focus on a manageable number of tasks, and get support from others.
Consider how you and others in your family cope with stress. Encourage everyone to manage their stress in healthy ways. Set an example for the rest of your family.
Remember you are not alone
Remember that you are not alone in this. Others have dealt with similar issues you are facing. They may be able to give you support and advice that can help.
Sometimes it is helpful to talk with another parent of a teenager with JIA. Ask your health-care team if you feel this will be helpful.
Accessing other resources
There may be other social support resources available in your area. Speak with your doctor or other members of your health-care team.