“The absolute worst thing is that no one wants to believe you, no one wants to take care of you.”
Somatic symptom and related disorders (SSDs) are a group of diseases in which youth have physical symptoms that are either very distressing or result in significant disruption of their daily functioning, as well as excessive thoughts, feelings, and behaviors regarding those symptoms. The symptoms are typically more severe than would be expected for an existing medical problem or may occur in the absence of a clear medical problem.
SSDs are common in both children and adolescents, occur across cultures, and can begin as early as the preschool years. Other names for them include somatoform disorders, conversion disorders, psychological factors affecting medical conditions, or psychosomatic disorders. They have also been called functional disorders (such as functional pain disorders, functional gastrointestinal disorders, or functional neurological symptom disorders).
It is not unusual for youth with SSDs to see a variety of medical specialists and undergoing multiple medical tests in search of an answer, often with little or no positive findings. Despite this, it’s important to know that SSD symptoms are real, distressing, and can cause significant impairment and disability.
The mind-body connection
While many people view the body and the brain as separate, scientific research has shown that the two are closely linked and that psychological and social factors can influence how our bodies function. The body and the mind work together to promote well-being — what’s often called the “mind-body connection.”
SSDs may develop after a stressful event or a major change in a child’s life. As with adults, children and adolescents can express their stress through physical symptoms rather than through emotions or thoughts. Some children such as those with difficulty putting feelings into words or those who associate stigma to psychiatric illness seem to be especially susceptible.
Most people experience physical (or somatic) symptoms as part of everyday life without having a medical disease. For example, many people get a headache before a stressful event, or experience stomach upset when asked to give a public speech. In youth, stresses can include things like pressure at school, being bullied, illness in the family, parents’ divorce — or any major change, good or bad. Sometimes even fun situations can be stressful to the body.
Although SSDs are connected with psychological stress, this does not mean that children are “faking” or having symptoms purposefully. In fact, they may not even perceive events in their life as stressful. It is not uncommon for children with SSDs to experience some of these events without feeling stressed in their mind, but rather their body expresses the stress in the form of physical symptoms.
Why are some children susceptible to SSDs?
While stressful situations or major life changes are the trigger for SSDs, several risk factors can make a child more vulnerable:
- a tendency to keep feelings inside or “internalize” feelings
- learning difficulties that may affect how the brain identifies and understands emotions
- genetic factors
- medical illness or injury
The last factor — medical illness — may seem puzzling as a risk factor, but sometimes, a medical illness like a stomach bug or an injury can activate an “alarm” that will not stop ringing in the brain. Even after the medical condition goes away, it can still trigger the development of an SSD. In these situations, children may experience physical symptoms of the illness or injury more intensely and frequently than is typical, may recover more slowly, and/or may suffer other, unrelated physical symptoms.
Additionally, family environments where family members tend to get attention and sympathy for physical symptoms as opposed to emotional symptoms can influence the amount and intensity of physical symptoms in a child.
Somatic Symptom and Related Disorders | Symptoms & Causes
Common symptoms of somatic symptom and related disorders
- dry mouth
- hot or cold sweats
- dizziness, headaches
- trouble concentrating
- trouble with memory, etc.
Symptoms from the stomach and gastrointestinal tract
- stomach pain or bloating
- feeling “full” after only a few bites
- frequent burping
- burning sensation in the chest or upper abdomen
- loose stools or diarrhea
Symptoms from the heart and lungs
- chest pain
- difficulty breathing/shortness of breath
Symptoms from the musculoskeletal system
- arm or leg pain
- muscle aches and pains
- joint pains, back pain
- pain when moving
Symptoms from the neurologic motor system
- weakness or paralysis
- abnormal movements (i.e., tremors, stiff/rigid movements, episodes of abnormal generalized limb shaking)
- abnormal limb postures
- abnormalities with gait/walking
Symptoms from the neurologic sensory system
- reduced, or absent vision or hearing
- reduced or absent speech volume; altered speech articulation
- skin numbness
- sensation of a lump in the throat
- episodes of unresponsiveness resembling fainting or coma
Adapted from American Psychiatric Association, DSM-5, 2013.
How do the somatic symptoms happen?
The brain is a powerful organ. In addition to being responsible for processing our thoughts, feelings, and behaviors, the brain manages all of the body’s functions, from sensations like pain, touch, and temperature to movements of our limbs, our heartbeat, bowel and bladder function, and more. Think of the brain as a control tower that sends and receives messages, or “signals,” from the entire body, carried by the nerves.
When the mind-body connection works well, the brain filters out unimportant signals without us even knowing. However, children and adolescents with SSDs tend to have hypersensitive signals and become aware of body signals that are normally filtered out by the brain. The brain and parts of the body where there is no disease may also start signaling to each other more frequently. For instance, some children with SSDs have many signals in the brain’s pain centers, which can make pain feel worse and may even show up on brain scans.
During childhood, SSDs are equally common in boys and girls, but in adolescence and adulthood, they are more common in females. Up to half of children and adolescents with an SSD also experience depression and anxiety.
Somatic Symptom and Related Disorders | Diagnosis & Treatments
How do we diagnose SSDs?
When an SSD is being considered, a pediatrician and a mental health clinician should evaluate the child or adolescent from physical, psychological, social, and developmental angles, both separately and in relation to each other. Having an SSD does not exclude the possibility of a physical illness, and vice versa. Both can and often coexist in the same child, so evaluation from multiple perspectives is key.
In evaluating for SSDs, clinicians will consider whether a child’s symptoms are more frequent and intense than the passing somatic symptoms we all experience, whether the child is having excessive and persistent thoughts and anxiety about existing physical symptoms, and whether the symptoms interfere with daily life, including school, home life and/or peer relationships
Medical evaluation is based on symptoms and guided by any previous tests the child or adolescent may have had. Many youth with SSDs have been subjected to a variety of medical tests already, so any medical work-up is balanced with the need to avoid unnecessary and potentially harmful tests and procedures.
Generally, in children and adolescents with SSDs, the physical examination will find that the symptoms change in different contexts, may not be consistent with any medical findings, or may be more severe than what would be expected from the medical findings.
If an SSD is suspected, a psychiatric consultation can help the child’s care team understand what may be contributing to the child’s distress and which treatments are likely to be most effective. Through careful interviews with the child and family, the team will seek to get a picture of:
- the nature of the physical symptoms
- the history of any past episodes of symptoms
- how the child is functioning emotionally, socially, and academically
- how the child and family are currently coping with the symptoms
- family life in general
The psychiatric clinician will also evaluate the child for mood and anxiety disorders. These disorders often accompany SSDs and can themselves cause physical symptoms that tend to go away when the mood/anxiety disorder is treated.
How Boston Children’s Hospital approaches SSDs
Having a condition that is “invisible” or being told your symptoms are “just in your mind” only adds to the stress of having an SSD. Our specialists understand this and will pull together a diverse team to address the mind and the body at the same time. For many families, it’s a relief to get validation that the symptoms are real and to know that others are going/have gone through the same thing.
SSDs are often temporary, and many children and adolescents fully recover. The most effective treatment involves a team of different specialists — medical doctors, psychologists, psychiatrists, physical therapists, and nurses — working together to address the mind and the body at the same time.
Types of treatment for SSDs
These are the approaches that research has shown to be most helpful:
Cognitive behavioral therapy (CBT) helps patients redirect themselves away from negative thoughts and beliefs that make SSDs harder to cope with and can even worsen symptoms.
Imagine the nervous system as a dimmer switch. When the setting is low, the nervous system is calm and symptoms are few and mild; when the setting is high, the nervous system is more activated and symptoms escalate. The setting can be influenced by many factors, including:
- how much the child thinks about their symptoms
- how people around the child react to their symptoms
- the child’s past experiences with the symptoms
- the child’s worry about what is wrong
- the child’s ability to distract themselves from the symptoms
Through CBT techniques like relaxation training and biofeedback, children and adolescents get psychological support and learn strategies to gain more control over their stressful emotions and body sensations, keeping the dimmer switch on a “low” setting.
Families often participate in CBT as well, to help reinforce their child’s new coping strategies and support their recovery.
Exercise and physical rehabilitation
Many youth with SSD experience a deterioration of their physical fitness. Some have previously been very active, and it may be hard to accept that their abilities have changed. Along with the psychological support of CBT, physical rehabilitation gets youth moving, an essential part of their “toolbox” of wellness strategies. Working with a physical therapist or occupational therapist will gradually increase their energy, endurance, and ability, one step at a time.
As physicians continue to monitor the child’s health, they might suggest medications to help with the SSD. Medication can be used to reduce the physical symptoms and discomfort, as well as to treat anxiety, sleep problems, or mood disorders like depression that can make the physical symptoms worse.
CBT and physical rehabilitation — the two mainstays of treatment — require hard work. The more motivated youth and families are to engage in these forms of treatment, the more they will benefit from them.
In some instances SSDs can become chronic and disabling, particularly when they are unrecognized for a long time. When an SSD is severe and debilitating, a more intensive multidisciplinary treatment program like a partial hospitalization or inpatient care may be recommended to support the child’s physical and psychological recovery.
Most children and adolescents with SSDs benefit from this multi-team treatment. Studies show that some are cured and many will feel significantly better. Follow-up care can generally be handled by their pediatrician.
Symptoms may wax and wane in times of change or stress, but being aware of this possibility can help prevent new episodes or help with quick recovery if they occur again.