What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis is a complex disorder characterized by extreme fatigue and tiredness. It consists of many different symptoms that do not go away with rest and cannot be explained by an underlying medical condition. There are many different physical and psychological effects of chronic fatigue syndrome which will be felt with different levels of severity, depending on the person.1
The most commonly felt symptom which characterises the condition is persistent pain or fatigue most of the time. This feels very different from ordinary tiredness and simple physical or mental activities, or combinations of activities, may leave your child feeling shattered or struggling to function.2
Although the condition cannot be cured, there are treatment options aimed at managing and relieving symptoms to make the condition more bearable.1
Chronic Fatigue Syndrome is unpredictable and therefore hard to diagnose.3 Symptoms of CFS often mimic symptoms of other illnesses and therefore create diagnosis difficult.10 Once your child has been diagnosed, work together to understand the condition and the symptoms that may come along with it. Every case of CFS is different therefore every case will need to be treated differently.
Psychological Effects
Chronic Fatigue Syndrome is characterized by many different psychological and physical effects. Your child may not experience all of these and if so, they may only occur a few at a time. Ensure you speak to your doctor about any symptoms that are increasingly worsening as your GP or specialist may have ways to deal with and relieve symptoms. Additionally, any new symptoms should be discussed with your doctor as they may not be directly related to CFS.2
Some of the psychological effects your child may encounter include:2
¬ Loneliness
¬ Social Isolation
¬ Increased stress levels
¬ Disorders such as anxiety and depression
¬ Loss of concentration
¬ Reduced attention span
Each diagnosis of Chronic Fatigue Syndrome will differ immensely. Like any chronic illness, symptoms can be anywhere from mild or moderate to severe.1
¬ Mild – the patients’ activity is reduced by at least 50 percent.
¬ Moderate – the patient is mostly housebound.
¬ Very severe – the patient is bed-bound and fully dependent on help for all daily care.
Even the mildest cases of CFS have to ability to hugely impact an individuals’ life. This may range from the inability to complete everyday tasks or even get out of bed. Stay in touch with your child. Ask them daily questions about how they’re feeling.
Issues in Children and Adolescents
If Chronic Fatigue Syndrome seems scary to you, think about your child and how they’re feeling. This is a new stage of their life and it may seem overwhelming and frightening. It is important to stay in touch with your child, ask them how they are feeling, and what’s going on. Try to be a part of their life rather than a hassle.
Issues that may feature prominently in children include self-concept, body image, socialization, sexuality and academic goals. Children diagnosed with CFS may need to make adjustments to schooling and education.
This may include:4
¬ Limiting the number of subjects taken
¬ Mixture of home and real schooling (when/if possible)
¬ Limiting the number of attended days per week
¬ Larger print texts
¬ Classroom assistance
¬ Change in physical settings
Children are still developing and forming the person they will be in the future. An impact as huge as chronic illness may stunt development and leave a child feeling confused and unsure. This will impact the way they view both themselves and others around them particularly when it comes to features such as self-concept and sexuality. Additionally, physical factors such as inability to attend school will affect a child’s personal and academic goals which will largely affect their mood and psychological wellbeing.12
Development
Australian research has concluded that children who have a chronic illness at the time of beginning formal education are up to 34 percent more likely to experience developmental delays.5
Development as a child is extremely important as this stage creates the building blocks of the rest of a lifetime. Chronic pain during childhood may change the wiring in the brain, leaving a person more vulnerable to pain later in life. Chronic illness in children will have an influence on many different factors including sleep, diet, social abilities, independence and self-esteem. These are all vital elements of a child’s development therefore disruptions to these will impair development.6
“Early childhood is a period of rapid growth in abilities which form the foundation of future academic success.” “Therefore, the effects of chronic illness on development have the potential to be long lasting, even if the child’s health recovers.” (Megan Bell 2008).5
There are many different elements of social development. These can be pictured as building blocks. Each stage needs to be completed/developed to reach the next stage. Any impacts or alterations to the development of a child will impact both the rest of their development as well as the rest of their life. Throughout the early stages of one’s life, an identity is formed and developed. Chronic illness has the ability to impact this and may leave children feeling lost, leading to mental illness such as depression.12
So, what can we do to help? Try to involve your child when they are able to. This will help them to excel in as many ways as possible. Practicing techniques such as fine motor skills will enable your child to develop at a healthy pace.8
“It is clear that for healthy children, developing the mind and body requires work to reach the next task or stage. Now consider the ill child, who must develop alongside his well peers. This child is facing life-threatening illness in addition to growing and developing. Clearly, illness and disease affect childhood development for the ill child and the siblings as well.” (Armstrong-Dailey & Zarbock 2001).6
Management
Along with Chronic Fatigue Syndrome comes many psychological and physical effects. These effects may leave patients feeling upset, confused or depressed. Our aim is to help patients manage these feelings to improve their everyday life, dealing with such a complex illness.
Although there is no cure for CFS, there are ways to manage and relieve symptoms. Work with your doctor or specialist to create a management program specifically for your child.2
The first step to managing your child’s symptoms is being able to understand them in greater depth. Using the rating scale below, ask your child to rate how they are feeling. This scale rating may also be determined from an outside viewer. Track the number associated in the table below.
Self-Care
Chronic fatigue syndrome will force you to create adaptations in the life of both you and your child. Your child will go through bad and good phases, known as relapse and remission. It is important to accept and understand this.
Balance Try to balance activities and tasks as best as possible. Having a healthy mix of rest periods and activity will help avoid going through relapse often.9
Exercise It’s important to exercise as it will help your child to remain active and strong. When beginning, try low impact exercises such as hand stretches, sitting and standing and picking up and grasping objects. These tasks and activities can be manipulated and the intensity may be increased over time, according to the severity of your child’s condition.9
Nutrition By managing and carefully following a healthy, nutritious diet, symptoms may be managed and relieved. This diet can be tailored to the individual although it may consist of eating several smaller meals during the day. This will help to control nausea, which is a common effect of CFS. Additionally, it may be beneficial to avoid alcohol, excessive sweeteners, sugar and caffeine.1
Relationships Chronic fatigue syndrome has the ability to hugely affect lifestyle and personal relationships. A psychological effect of CFS that is common in many young people is social isolation. To avoid this when possible, ensure your child has access to facilities and events where they may be able to interact with others. This is particularly important if the child is no longer attending school.9
Sleep Unrefreshing sleep is a huge factor and symptom of this condition. A common result of lack of sleep is deprivation. This can make symptoms worse and therefore delay recovery. CFS sufferers should have at least 8 to 9 hours sleep daily and aim to plan naps when a late night is endured.3
How Parents Can Help
Chronic illness may seem scary, especially if it is new to you. Think about your child and how they’re feeling. Try to understand them and work together towards creating a positive lifestyle whilst suffering from such a debilitating condition.
Conduct your own research Take some time to read and find out about the condition that your child is suffering from. This will enable you to understand and even empathize with what your child is feeling.2
Be involved Ask questions about how they’re feeling, try to understand your child. Show them that you want to help, try to be a part of their life, rather than a hassle.
Listen to your child and their body If they’re not feeling up to something, don’t force it. Many parents don’t allow their children to attend hobbies or pleasurable activities if the child is not going to school. Let them use the little energy they may have on something they enjoy.7 It will only be beneficial and set them up for a happier and healthier future.
Maintain a positive attitude Try to stay positive. If you can’t be positive, then neither will your child. Work together to strive for a brighter future.