What does a teenager with a chronic illness feel? Learn about the emotional load of conditions like diabetes and asthma, treatment adherence and family support.
A young person who goes to the toilet to check their blood sugar while their friends buy toasties and fizzy drinks at the school canteen, who sits on the sidelines in PE so they do not get short of breath, who packs their medication, medical report and emergency card into their bag before a school trip... A teenager with a chronic illness has to think every day about things most of their peers never think about. Adolescence is already a period in which the body changes, identity takes shape and the question "Am I normal?" is asked often. When diabetes, asthma, epilepsy, coeliac disease, a rheumatic condition or another long-term health problem is added to this, the young person carries an extra load in managing both their body and their emotions. In this article we look at the inner world of young people living with a chronic illness, the emotional difficulties they commonly face, the reasons that may lie behind problems with sticking to treatment, and how the family can offer support along the way.
What Does a Teenager With a Chronic Illness Feel?
Every young person and every illness is different. But there are common feelings shared by many young people living with a chronic illness.
Feeling different: In adolescence, being like one's peers and fitting in with the group matter a great deal. Taking medication at school, watching what they eat, being unable to join some activities or frequently being signed off sick can strengthen the young person's feeling that "I'm different from them."
Anger and a sense of injustice: The question "Why me?" is often heard from these young people. Living with restrictions while their friends eat and drink whatever they like and stay out late at night can create a deep sense of injustice.
Anxiety: Possibilities such as having a seizure at school, becoming breathless in front of the class or having their blood sugar drop at a friend's house can constantly occupy the young person's mind. Some young people begin to avoid new settings because of this anxiety.
Shame and the wish to hide it: Many young people want to hide their illness from their friends. This can lead them to take their medication secretly, ignore their symptoms or skip necessary precautions.
Fatigue: Alongside the physical tiredness the illness itself causes, there is also a mental tiredness that comes from constantly being careful, taking measurements and planning ahead. Professionals sometimes call this "treatment fatigue".
Worry about the future: Questions such as "Will I be able to choose a career?", "Will I be able to go to university in another city?" and "Will I be able to start my own family one day?" become more prominent, especially in middle and late adolescence. Our article on career choice for young people with a chronic illness may also offer guidance on worries about choosing a career.
For a broader framework on the psychological side of chronic conditions, you can read our article on the psychology of chronic illness.
Why Do Adolescence and Managing an Illness Clash?
In childhood, managing the illness is largely the parent's responsibility: the mother or father reminds the child about medication, arranges doctor's appointments and organises meals. In adolescence, however, the young person wants to take control of their own life. This natural need for autonomy can clash with managing the illness in various ways.
The young person may perceive their parent's reminders as interference, even as an attempt at control. Sentences like "Did you check?", "Did you take your medication?" or "You weren't supposed to eat that" may echo in the young person's ears as "I don't trust you." As a result, the young person may try to prove their autonomy by neglecting the management of their illness.
In addition, the brain's skills for assessing risk and planning for the long term are still developing during adolescence. A young person may not weigh up, the way an adult would, the consequences that a measurement skipped today or a precaution neglected might have later. The thought "Nothing will happen to me" is very common at this age.
The hormonal changes of adolescence can also affect the course of some illnesses. For example, during growth spurts it can become harder for some young people to keep their illness under control. This can mean that even when the young person does the right thing, the results are not as expected, leading to the feeling "Whatever I do, it's pointless."
What Lies Behind Problems With Sticking to Treatment?
A drop in treatment adherence during adolescence is a common situation. Families often interpret this as laziness or irresponsibility. Yet there may be different reasons behind it:
- Denial: A young person who struggles to accept their illness may send the message "I'm not ill" by ignoring precautions.
- Peer pressure and shame: They may not want to take medication or eat differently in front of friends.
- Treatment fatigue: Routines that have gone on for years may have drained the young person's energy.
- Emotional distress: Unhappiness, hopelessness or anxiety can reduce the young person's motivation to look after themselves.
- Lack of knowledge: A young person whose illness has been managed by a parent since childhood may not fully know how to manage their own treatment.
- A power struggle with the parent: Treatment may have become an arena for conflict within the family.
Let's say a fifteen-year-old girl who has lived with diabetes for years has been skipping her measurements for the last few months, and her readings are poor at doctor's check-ups. Her mother questions her every evening, and she hides more and more. One day, in tears, she says, "All my friends are normal, I'm the only one who has to be careful about everything, I'm tired of it." This sentence shows that the problem is not laziness but exhaustion and the pain of feeling different. In a situation like this, the solution is not stricter monitoring, but for the young person's feelings to be seen and for responsibility to be reorganised, together.
What Does a Teenager With a Chronic Illness Face at School and in Social Life?
School is one of the places where a young person lives with their illness most visibly. Frequent absences, falling behind in lessons, flare-ups during exam periods and teachers not fully understanding the situation can affect academic performance and the young person's attachment to school.
On top of this, some young people may be mocked by peers or meet comments such as "they're exaggerating" or "they're faking it". Especially with illnesses that are not visible from the outside, the young person may feel that the difficulty they are going through is not understood.
In social life, activities such as birthday parties, school trips, residential camps and eating out with friends require extra planning. Sometimes the young person grows tired of this planning and chooses not to take part, which can lead to isolation over time.
Changes the illness causes in the body, or side effects of treatment, can also affect the young person's body image. Weight changes, differences in height, marks on the skin or medical devices may lead them to compare themselves with others. Our article on body image offers further information on this.
How Can the Family Help?
Being the parent of a young person with a chronic illness brings its own particular worries and exhaustion. The parent has to keep striking a balance between protecting the young person and giving them autonomy.
Hand over responsibility gradually
Leaving the management of the illness to the young person all at once, or keeping it entirely in the parent's hands, can both cause problems. Talk together about which tasks belong to the young person and which to the parent, and increase their share of responsibility as they gain skills.
Don't make the illness the only topic of conversation
When every conversation with the young person revolves around readings, medication and doctor's check-ups, they can come to feel defined only by an illness. Make room to talk about their school, friends, interests and dreams too.
Use curious rather than blaming language
Asking "What made it hard to do your measurement today?" instead of "You didn't check again?" reduces defensiveness and makes it easier to understand the real reason for the problem.
Work with the school
When teachers, the school counsellor and, if necessary, the school management are aware of the young person's situation, the right steps can be taken in an emergency and the young person can be supported in school life. In these conversations, asking for the young person's view and deciding together how much information will be shared with whom means respecting their need for privacy.
Prepare an emergency plan together
Planning in advance with the young person what will happen if symptoms worsen on a school trip, at a friend's house or during an exam reduces both their anxiety and yours. It helps for this plan to cover questions such as who needs to know, what information will be saved on their phone and who will be contacted first. When the young person has a say in preparing the plan, they are also more likely to follow it. Keeping the necessary supplies ready in a bag for unexpected situations such as an earthquake can also strengthen the family's sense of control.
Notice small successes
Managing the illness often only comes up when something goes wrong. Noticing and naming moments such as the young person going to a doctor's appointment on their own, being able to tell a friend about their illness, or getting through a hard week while keeping to their routine nurtures their self-confidence.
Support them in meeting young people with similar experiences
Meeting other young people living with the same illness, through camps or youth gatherings organised by hospitals and associations, can give a young person the feeling that "I'm not alone."
Don't forget the siblings
When the family's attention is largely focused on the young person who is ill, siblings may feel overlooked. Spending one-to-one time with them too protects the family's balance.
Make room for your own feelings too
Parents also experience anxiety, guilt, exhaustion and at times anger. Getting up in the middle of the night to take a measurement, spending hours in hospital corridors and being squeezed between work and treatment create a serious load over time. Recognising these feelings and seeking support when needed allows you to accompany the young person from a calmer place.
A chronic illness is part of a young person's life, but it is not the whole of their identity.
When Should You Seek Professional Support?
Living with a chronic illness makes it natural to feel sadness, anger and anxiety from time to time. However, in the following situations it can be helpful to get psychological support from a professional:
- If treatment adherence has dropped markedly and conversations within the family are not helping
- If the young person has seemed unhappy, hopeless or withdrawn for a long time
- If they do not want to go to school and are pulling away from friends and activities
- If intense anxiety about the illness restricts the young person's daily life
- If uncontrolled or overly restrictive eating behaviours have appeared
- If the relationship between parent and young person has turned into constant conflict because of the illness
In some young people, deliberately neglecting treatment can be an expression of hopelessness or a wish to harm themselves. If the young person talks about ending their life, or is putting themselves in danger by abandoning their treatment, take it seriously and, if there is immediate risk, call 112 (emergency services) without delay. For decisions about the young person's physical health, always stay in contact with the doctor managing their treatment.
How Is a Young Person Living With a Chronic Illness Supported in Therapy?
In adolescent counselling, the aim is to support the young person in developing emotional and practical skills so they can carry on with their own life alongside their illness. Psychological support does not replace medical treatment; it offers, alongside it, a space that strengthens the young person's overall well-being.
In Cognitive Behavioural Therapy, thoughts and feelings about the illness are explored. Thoughts such as "Because of my illness I'll never be normal" or "Everyone feels sorry for me" are identified, and more balanced perspectives are developed. Skills such as managing anxiety, problem-solving, explaining the illness to friends and standing up for themselves in social settings are practised.
Acceptance- and values-based work is also important in this process. The young person learns to see their illness not as the whole of their life but as one part of it, and to move towards the values and goals that matter to them.
In sessions with parents, sharing responsibility, the language of communication and the parent's own worries are addressed. When needed, the family can attend sessions together to reorganise the conflicts that have built up around treatment.
Frequently Asked Questions
Why does a teenager with a chronic illness neglect their treatment?
Behind this there may be denial, not wanting to look different in front of peers, treatment fatigue built up over years, emotional distress or a power struggle with a parent. Understanding the reason is a far more effective starting point than stricter monitoring.
My teenager wants to hide their illness from friends. Should I allow this?
Deciding who gets how much information is part of the young person's privacy. However, it is important for safety that at least one close friend and school staff who could help in an emergency are informed; this balance needs to be worked out together with the young person.
Does chronic illness increase the risk of depression in teenagers?
Living with a long-term illness is emotionally challenging, and some young people may show symptoms of depression or anxiety. For this reason, it is important to keep a regular eye on the young person's mood as well as their physical health. For a teenager with a chronic illness, emotional support can be seen as a natural complement to treatment.
How much information should be given to teachers at school?
It is helpful for teachers to have basic information so that they know what to do in an emergency and understand the young person's needs, such as absences or tiredness. Deciding the extent of the details together with the young person protects their sense of control.
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Eda Erkan Alapala
Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.
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