How to Know if Your Teen is Struggling with their Chronic Illness

Sometimes your teenager will show behaviors that you might assume are happening simply because they’re “just being a teenager.” But how do you really know whether your teen is “doing what teenagers do” or if the behavior is because of their chronic illness? 

Here are seven signs that your teen is struggling with their chronic illness.

#1. Teen School Attendance Problems with a Chronic Illness

School is not always the most exciting thing for a teenager, but it can be much harder when they have a chronic illness. At its simplest level, their health condition makes it harder for them to carry out the day.

Attending school five days/week is a full-time job that requires them to focus for long periods of time and carry on “like normal,” in spite of their body not feeling it’s best. 

When they arrive, there’s so much going on during a given school day, and many chronically ill teens are expected to perform like other peers without chronic health challenges (all while managing their health symptoms).

Everything feels harder for them – from getting to class, listening to the teacher, keeping high energy to spend time with friends and even participating in school events. 

They often have to work much harder to do those things, which doesn’t seem appealing for a teenager. This makes going to school feel impossible for them, because from their point of view, it’s a reminder of what’s hard for them.

Why My Teen’s Chronic Illness Makes Them Want to Stay Home

Many chronically ill teens feel out of place when other students aren’t seeming to make the trips to the nurse’s office or needing to lie their head down on the desk. 

They have no idea that over 40% of school-aged children and teenagers have at least one chronic illness. That’s 4 out of 10 students! 

Your teen is literally working in overdrive to care for their health and seem “normal” while trying to perform in school. That’s emotionally and physically draining.

This challenge can make your chronically ill teen question whether or not it’s worth going to school on certain days… And sometimes their body makes the decision for them to stay home because their health is declining. 

Their body is exhausted and unable to enjoy and participate in the experience like they truly want to.

Here are some common thoughts around school attendance with a chronically ill teen:

1. “Maybe I should sit this day out.” 
2. “I’m exhausted from yesterday, and can’t imagine getting through one class without coming back home.”
3. “It’s so embarrassing needing to take the extra restroom break.”
4. “What will others think if I need to come back home?”
5. “I don’t think my teacher believes that I’m really sick.”
6. “I can’t do this.”
7. “Am I working hard enough? Other people seem to be doing just fine.”
8. “The people at school just don’t understand that it’s hard for me to be there all day while feeling like this.”
9. “I want to be there with my friends, but I don’t feel well enough.”
10. “I’ve already been out so long… Will I ever be able to catch up?”

If your teen is starting to give reasons why they can’t go to school or are calling you to pick them up more often, it may be a good time to have a conversation about how their health is impacting school so that you can make a plan to support them. 

Here are some tips to help your teen experience more good days with a chronic illness.

#2. Chronic Illness Lowers Energy Levels

Does your teen seem more tired than usual even after getting a full night’s sleep? Do you notice them taking more naps nowadays? They could be dealing with chronic fatigue.

Fatigue is one of the most common symptoms that chronically ill people experience. Many people relate it to feeling like their bodies are weighed down, making it harder to do “simple things” (i.e., brushing their teeth, making the bed, getting dressed, etc.). 

A helpful way to talk about your chronically ill teen’s energy levels is through using The Spoon Theory. This was created by another chronically ill person who needed to explain to their friends why they are so tired all the time.

I admittedly use the spoon theory when discussing energy with family members and my chronically ill clients. It helps to make the conversation relatable and simple, which is important when you’re chronically ill. 

Your teen may not understand how their chronic illness affects their energy levels or makes it harder for them to be themselves. Start the conversation with them using The Spoon Theory to help them connect the dots. 

#3. Your Teen Feels More Sadness or Irritation than Usual

Living with a chronic illness is an overwhelming experience for anyone. But when you consider what it’s like being a chronically ill teenager, most people their age could never understand what it’s like.

Imagine this…

At this time in your life you are learning who you are through connecting with people. Being liked and seen as someone that other people want to be around is how you develop self-esteem as a teen .

And when your health condition separates you from other people without your permission, it can take a huge toll on your mental health.

It’s freaking hard and devastating.

How are these feelings expressed by my chronically ill teen?

As a loved one, parent, caregiver or teacher you might initially see your teen express their feelings by not doing their homework/chores, attending school less, becoming easily upset, raising their voice, becoming “combative,” or being “unreasonable.”

But what they really could be trying to express is that they are having a hard time. 

It almost becomes “unreasonable” for them to talk about how they feel because they live in a society that doesn’t make it OK to not be OK.

Now, that doesn’t mean that you as the loved one are making it harder, but society as a whole praises people for pushing themselves, going the extra mile and being excellent. It’s not everyday you see people being welcomed to talk about heavy feelings that come with a chronic illness.

Because of this societal norm, your teen could have learned indirectly that it’s best to keep their feelings to themselves to avoid being noticeably different or a burden on others.

Common expectations that are hard to keep as a chronically ill teen:

1. Keep going as if they are OK.
2. Stay on top of their schoolwork (meet every deadline with minimal accommodations).
3. Smile through the pain and do not “look sick.”
4. Participate in all the school and extracurricular activities without issue.
5. Maintain all friendships.
6. Complete all of their chores.

 The list goes on…

Some of these expectations are great within reason, but at some point all of these expectations take a toll on your chronically teenager over time when they don’t feel well enough to do it all.

It can become a really dark, lonely place when you feel like you’re stuck in a body where you’re not able to be open about what’s going on.

Have you noticed any of the signs in your chronically ill teenager?

Read more to learn how chronic illness can affect your teens’s mental health.

#4. Withdrawn from Social Relationships 

As a chronic illness therapist, one of the most common things that I hear teens say is that 1) they feel like they’re missing out, 2) they feel like their friends have forgotten about them and 3) none of the other kids know what it’s like to be chronically ill.

Chronically ill teens tend to spend more time at home or receiving medical care to tend to their needs. This means they may be spending less time in school or doing things that all the other teenagers are doing.

Most times this is out of their control, because they need to take time away to manage their chronic condition. However, the distance from others can make them feel lonely as well.

Why does my chronically ill teen feel alone when they have friends?

Teenagers most likely talk about their feelings with their friends before coming to their loved ones, but it’s hard to talk about their health with friends that have no idea how to respond.

Many times their friends may change the subject or not say anything at all about your teen’s chronic illness. In some situations, their friends may stop reaching out because they don’t know how to handle it or the topic of your teen’s chronic illness may be too heavy for them.

Your teen may notice their friends posting pictures on social media and spending time together without them, making them realize they didn’t get the invitation… 

This is something that happens quite often when your teen is chronically ill.

Seeing those images alone is isolating and defeating. It makes your self-esteem drop when your friends don’t think enough of you to invite you out.

How Society Makes it Harder to Connect with a Chronic Illness

Now, let’s be honest here… Teenagers can’t be expected to know how to handle these types of situations without being taught. 

Our society does not speak openly enough about the challenges about being chronically ill (especially at a young age), so understandably teenagers don’t always know what to say when their friend is carrying a load that’s so heavy like having a chronic illness.

These things can make relationship building really hard for your chronically ill teenager. 

Here are some ways to help your teen talk about their chronic illness.

If your teen could use more positive interactions with other chronically ill teenagers, participating in a chronic illness support group is a helpful way to do so. I currently have a Teen Chronic Illness Support Group that helps them build community, feel understood and learn skills to use when in challenging situations.  

#5. Your Teen’s School Grades are Dropping

Most of the chronically ill teens I have spoken with mention feeling pressure to perform at a high level despite feeling severely ill. They are often asked questions like, “What did you get on your report card?,” or “What do you want to be when you grow up?,” or “Are you getting ready to apply for college?

These are sometimes hard questions to answer for a chronically ill teen. 

They are expected to have all these things figured out and keep up with school demands like everybody else, even though they live in a body that requires them to slow down or approach things differently.

It’s much harder for your teen to perform at high levels like everybody else when they have a chronic illness.

Don’t get me wrong – it’s possible to perform well in school with a chronic illness, but it makes it that much harder when they are managing complex medical and mental health concerns.

How my chronically ill teen faces school pressure differently

The pressure that chronically ill teens feel when balancing school work and their health may require them to make adjustments. Some of those adjustments include taking more time to complete assignments or completing coursework in smaller time increments.

Here are some signs that your teenager is feeling more school pressure:

1. Difficulty keeping grades up to a certain level
2. Grades are suddenly dropping when they seemed “just fine” last marking period.
3. Feeling more frustrated around homework time.
4. Feeling more worried about getting an assignment completed on time.
5. Having a harder time focusing.
6. Asking to stay home from school or skipping class

If your chronically ill teen is showing these signs, consider whether or not they need more support. Be mindful that this may not be a case of “typical teenage behavior.” They simply may not feel well enough to perform like their peers?

What does it mean if my chronically ill teen needs more help?

There’s absolutely nothing wrong with your teenager needing more school support or accommodations while managing their chronic health condition. In fact, it’s not a negative reflection on who they are. 

Requesting accommodations does not mean that they’re being lazy or not trying hard enough. It literally means that they need support being gentle and compassionate with themselves. Accommodations help them to do that.

Giving your teen more academic support allows them more grace to get the work done in a timeframe that their body is best capable of doing at the time.

If you’re noticing these signs, this is the time for you to advocate for your teenager. Discuss how their health condition is negatively impacting their ability to function in school. 

Who can help my chronically ill teen receive school accommodations?

Only specific people in your teen’s school will need to know about their health condition and any support they may need. This begins with a confidential conversation with your teen’s doctor and an education specialist at their school.

The IEP and 504 accommodation specialist can help collaborate with the medical team to make specific adjustments for your teen. They can also attend the school meetings with you. 

Your teen’s chronic illness therapist can also advocate for your teen, because we understand that chronic health conditions impact multiple areas of your teen’s life.  

Need help requesting an IEP or 504 Plan for your teen? Here are some resources to get you started.

#6. Focusing or Completing Tasks are more Difficult with a Chronic Illness

By the time kids turn 12 years old, they’re becoming more and more familiar with the need to “get things done.” They’ve got household chores, homework assignments and extracurricular activities. Maintaining a social life also adds different things on their to-do list.

Unfortunately, when you live with a chronic illness, managing tasks and focusing on all of these things is not easy. You might notice that your teen gets really easily distracted, needing reminders or more time to get things done.

It can be a frustrating experience for you and your teenager. 

Your chronically ill teen can have the intention to get something done and then lose their focus shortly after. Brain fog and fatigue can cause your teen to lose their train of thought and have to start all over again. 

Also, it’s important to remember that if they are experiencing other medical symptoms, much of their attention is focused on managing their health.

They may ask themselves questions like: 

1) “How do I get all of this done with this migraine?”

2) “How am I supposed to clean my room and write this paper when I’m exhausted from not sleeping last night?” 

3) “How am I going to accomplish all of this when I feel like crap?”

It can be hard for teens to meet your expectations and feel like they’re literally contributing in a good way to society.

Why do completing tasks make my chronically ill teen feel like a burden?

Chronically ill teens often feel like they are a burden on their families when incomplete tasks are the major focus. Emphasizing what’s not done can bring on feelings of shame and guilt. It can lead your teen to feel incapable, as if they are not contributing to anything positively. 

Making the “undone list” a priority can lower their self-esteem and increase stress levels, leading to a decline in your chronically ill teen’s mental and physical health.

Yes, completing certain tasks is important, but creating a balance on how it’s talked about makes all the difference. Your teen needs more encouragement, grace and compassion with getting things done, because that helps them make more progress over time.

How do I help my chronically ill teen get things done?

So if you’re noticing that your teen is having a hard time focusing, don’t give up. Be gentle and consider different ways you can help your chronically ill teen organize tasks, making it easier for them to get things done each day. 

This doesn’t mean that you completely stop giving them things to do, because it can be quite helpful for them to feel like they have something positive to contribute. However, what, when and how they do things might change based on how their health is impacting them.

Remember supporting your chronically ill loved one may not look the same each day, so give yourself some grace as you approach each day and situation.

Here are some specific task adjustments for your chronically ill teen:

Instead of giving them a laundry list of chores to do in one day, break that list into smaller chunks over the course of the week to preserve energy. 

1. Making the bed may not always be a top priority, but getting dressed and completing their hygiene routine are still important. 
2. Vacuuming or sweeping their bedroom floor once or twice a week instead of every day can preserve energy for a teen prone to high levels of fatigue. With guidance from their doctor or physical therapist, consider a helpful routine so that they can feel more accomplished.
3. Giving them more breaks while completing school assignments rather than expecting it to be completed all at once. A refreshed mind is more likely to complete the work with more accuracy.

Remember, it’s not a sprint. It’s a marathon. Here are some additional tips to follow when making adjustments with a chronic illness.

#7. Feeling Helpless with a Chronic Illness

Feeling helpless is something that a lot of chronically ill people experience. This feeling is amplified as a teen when they have difficulty expressing themselves. 

As a chronically ill teen, they hold the pressures of completing tasks, keeping up with relationships, performing at a high level and making you proud. But it’s hard to do that when they don’t understand how to support themselves through it.  

Let’s face it. It’s hard being in a body that doesn’t easily respond to treatment or help you be like everybody else. Sometimes it’s not as simple as taking medication discreetly and then getting back to your life.

Sometimes your teen’s chronic illness is so long-standing and substantial without specific answers on how to treat it. Instead the focus becomes how to manage the symptoms.

And on top of that, if your teen’s health condition flares up, there is an unpredictability that can change how your life looks at any given time.

It’s hard enough being an adult living with an illness that no one really knows how to find a solution. But when you’re a teenager, the concept of waiting for things to get better for an unknown period of time just seems that much more unbearable.

This is where feelings of helplessness come in.

Helplessness can be a very dangerous position to be in for a chronically ill teen, because it puts them at risk of thinking and acting on dark, unhealthy thoughts. 

What are some signs that my chronically ill teen is feeling helpless?

1. More panicking and worrying. 
2. Lashing out or yelling 
3. Seeming constantly irritable. 
4. Appearing to have less concern about things that they used to be dedicated to (they act like they don’t care anymore).
5. They need more reassurance and encouragement from you than usual

How to respond to your teen if you notice signs of helplessness:

1. Provide encouragement and express gratitude for things that they are doing (even if you think it’s small).
2. “I can see you’re feeling more tired. Perhaps you could take some time to rest.”
3. “I can tell it’s really hard for you and you’re missing your friends. Maybe we can go for a ride and get some ice cream.”
4. “I can see you’re in more pain right now. Is now a good time to take some medication or grab your heating pad?”
5. “I know this assignment is really stressful for you.You’re really doing a great job. Let me know when you need a break. It’s OK to take one.”
6. “I know you have this long reading assignment due this evening. Would it help if we read it together?
7. I’m just checking in with you to see how you’re feeling. That was a lot to hear from the doctor today.

Talking with your teen about their chronic health condition in a way that makes them feel seen helps them feel supported instead of  helpless. It shows them that you understand what they’re experiencing, and you’re offering a solution in ways that they may not have considered at the time.

At the end of the day, there is a lot to consider when you are trying to help your teen face life with a chronic illness. As a parent, loved one and caregiver, it can be an overwhelming experience. 

Here are some extra tips to help you and your child cope with a chronic illness.

Next Steps for Chronic Illness Support

I’m Alicia Dorn – a Chronic Illness Therapist. I help teens, adults and their families manage the emotional toll that living with a chronic illness can bring. Therapy is a powerful tool that can help your teen cope with their chronic illness.

Although the journey with a chronic illness is hard, therapy can make it more bearable because you can talk through the topics during session, increase your confidence, and relieve your stress while talking with someone who understands.  

You can schedule your first appointment with me by booking a free 15-minute consultation call.