Lupus Canada Advokit

For the teenager with lupus

Even though a diagnosis of lupus can be difficult because it imitates many other illnesses, lupus is being diagnosed today at a younger age.

As a teenager with lupus, you face not only the challenges of the disease, but the challenge of feeling different than your peers.

It may be difficult, for example, to explain to your friends at school the "moon face" side-effect of some medications, or to admit how exhausted you are when you look quite normal to other kids. Having a chronic condition like lupus means being "different", and that affects how you are accepted.

Symptoms that arise will influence how well you can cope with school and extra-curricular activities, how you meet the expectations of your peers, teachers, parents and extended family members, and above all your own hopes and goals.

A majority of sources agree that the most effective method of dealing with these problems is to try to educate your peers about lupus.

Your teachers should also be aware of limitations that you might have to deal with periodically. For example, if you wait until the night before an exam to explain that you're exhausted, a teacher might not be as sympathetic as if you had explained your situation at the beginning of the term.

You might also try to arrange different study and exam patterns, in case a 'flare' takes over your life for a while. It is important not to overload! If you feel you can't take a full course load, try spreading your classes over a longer period of time. Adding stress to your illness can only extend the time it takes you to recover from a flare. It's all right to go easy on yourself.

Support groups for you and your parents can help to solve some communications issues. Often when teenagers with lupus get together, they are surprised to realize they share the same problems.

There are also supportive computer bulletin boards (BBSs) like Ability OnLine (see the section 'Provincial Resources'), for young people with disabilities, where you can find friendship and understanding.

A good relationship with your doctor - in which you can ask questions and talk things over - can help you deal with problems, large or small, before they take over your life. If your doctor doesn't have the time to spend with you, find out if there is someone else - a social worker or counsellor - who could help you deal with your concerns. Keeping things bottled up inside can make the situation worse. Your peer group or close friends may want to help by listening to your problems, but they rarely have the experience and the knowledge to provide solutions.

Be as well informed as you can. Local lupus associations can give you a reading list of books that provide good information on your illness. Also, try the library, the Internet, resources and supports listed on page 22. Do make sure your sources are reliable, though - not everything in print or on the Internet is credible.