Navigating the teenage years with a chronic illness or disability. This is a developmental period when peer relationships and fitting in are especially important, and chronic illness can complicate that. Teenagers are also wrangling with their self-esteem and their sense of themselves as independent people during this developmental stage, and dealing with a chronic illness can impact a teen’s self-image and limit their ability to be independent.
A chronic illness is difficult for anyone at any stage of life, but teenagers face a unique set of challenges, and it’s important for the adults in their lives to be prepared to help them cope with the realities of life with a chronic illness.
Check In Frequently
Every teen is different, and every chronic illness is different, too. Your teen’s condition and their reaction to it are their own, and they may not feel or act the way that you would expect. Some teens will be able to take their new reality in stride, while others will have a more difficult time. The only way to know for sure what your teen is feeling and whether they need help is to ask.
Check in with your teen frequently about their symptoms, their treatments, and their feelings. Try not to bring your own feelings into it, just be ready to listen to what your teen has to say. Acknowledge your teen’s feelings and remind them that however they feel is valid. Resist the urge to offer advice or input unless asked – instead, ask your teen to tell you how you can help.
Follow Your Teen’s Lead When it Comes to Treatment
A teenager is old enough to take on some responsibility and have some say in their medical care and treatment plan. That doesn’t mean that your teen is on their own, but it does mean that you should let them take the lead in their own care as much as possible.
Ask your teen which responsibilities they feel they can handle and which ones they want help with. For example, do they want to handle medication times themselves, or do they want a reminder from you about when to take medications? Do they want to schedule their own doctor’s appointments, or would they prefer you to do it?
If your teen isn’t following the treatment plan prescribed by their doctor, try to avoid getting angry about it. Instead, ask them what help they need or what they would like to change. Help your teen talk to their doctor about adjusting their treatments or medications if your teen isn’t happy with the current regimen.
Keep in mind that dealing with a chronic illness is constant and can be exhausting. A teen who has previously been scrupulous about following their doctor’s instructions could eventually experience burnout and need help maintaining their treatment plan responsibly. Parents should be willing to step in during those times and take over the responsibility until their teen is ready to handle it again.
Avoid Smothering Your Teen
Allow your teenager to be a teen with the fewest restrictions possible. This can be difficult for parents. When your child is already sick, you may feel compelled to protect them from any other possible threats. But what your teen needs, as much as possible, is to feel like just another teenager.
Of course, that doesn’t mean that you can’t have rules and boundaries for your teenager, but to the extent that it’s possible, try to set the same rules and boundaries for your teen with a chronic illness as you would for a teen without a chronic illness.
Defer to your teen’s knowledge of their own body – if your teen feels that their up for an activity or outing that you would otherwise allow, go ahead and allow it. Your teen doesn’t want a health setback any more than you want them to have one – apart from anything else, a setback will only slow them down further at a time when they want to be moving faster. That means that they probably won’t purposely try to do something that they believe will be too much for them to handle.
But at some point, they need to learn to make judgments about what they can and can’t handle, and it makes sense to start allowing them to make those judgments during the teen years. That way, if they do make a mistake or push themselves too hard, it will be while you’re still there to take care of them afterward. Making mistakes is part of growing up, and your chronically ill teen needs those experiences as much as a healthy teen would.
Don’t Let Chronic Illness Crowd Out Other Health Needs
You probably don’t need to be told to make sure that your teen sees a doctor regularly – teens who have chronic illnesses usually see doctors more often than other teens. But it’s important to make sure that your teen’s chronic illness doesn’t overshadow other types of health concerns.
Visits with your teen’s chronic illness specialist aren’t a substitute for regular checkups with their primary caregiver. And while your teen may be well-versed in the symptoms, causes, and treatments for their chronic illnesses, they may still have questions or concerns about other aspects of their health, just like any other teen. The teen years are a time of rapid physical change and development as well as social and emotional change and development, and that doesn’t change because of a chronic illness.
Be On the Alert for Mental Health Issues
Living with a chronic illness may put your teen at increased risk of certain mental health problems, like anxiety or depression. In the time period following their diagnosis, it’s to be expected that your teen might be especially worried, afraid, or sad. But if those feelings persist for an extended period of time, or if your teen’s behavior changes without any obvious reason, those could be signs of a more serious problem.
Look for symptoms like excessive crying, noticeable changes in appetite or sleeping habits, loss of interest in friends, family, and activities, reckless or risk-taking behavior, excessive irritability, or talking about feelings of hopelessness or worthlessness. These are all potential signs that your teen is suffering from a mental health problem and could benefit from talking to a trained counselor or therapist.
Make the effort to find support groups and other resources for your chronically ill teen and for yourself as well. It can help both of you to connect with others who understand what you’re going through.