Having a chronic condition like spinal muscular atrophy (SMA) can take a toll on mental health. Lack of control and fear of the future are common among children with SMA. This can lead to anxiety, depression, and poor overall quality of life.
Developing coping mechanisms can help children with SMA navigate difficulties in their life. Every child is different and copes in their own way.
It is important for children to be able to share their emotions and find support from others. This can include friends, family, support groups, or a therapist.
What is mental health?
Mental health includes our emotional and social well-being. It affects how we think and act. It also determines how we process information, handle stress, communicate with others, and make decisions.1
Mental illnesses are conditions that affect thinking and behavior. This includes depression and anxiety. Poor mental health is not the same thing as a mental illness.
People can experience poor mental health without a mental illness diagnosis. People with a mental illness can also experience periods of positive mental health.1
Unfortunately, mental illnesses are some of the most common health conditions in the United States. More than half of Americans are diagnosed with a mental illness at some point in their life. And 1 in 5 American children have had a serious mental illness.
Mental health can change over time depending on many factors. Common factors that worsen mental health include:1
- Negative life experiences early in life, such as trauma or abuse
- Experiences related to chronic medical conditions
- Genetic factors that affect the brain
- Alcohol and drug use
- Loneliness or isolation
What are anxiety and depression?
Anxiety is a feeling of nervousness, worry, or fear. Everyone experiences different levels of anxiety in their daily life.
In some cases, anxiety can be overwhelming and interrupt your daily activities. Symptoms of anxiety include:2
- Feeling nervous or tense
- Feeling that something bad is going to happen
- Fast heart rate, sweating, shallow breathing, and feelings of exhaustion
- Difficulty concentrating or sleeping
- Avoiding activities that cause worry
Depression is a continued feeling of sadness. Many people experience symptoms of depression at some time in their life.
If these symptoms last a long time, they can interrupt with daily life. Symptoms of depression include:2
- Constantly feeling sad or hopeless
- Low energy or poor sleep
- Headache
- Irritability
- Lack of interest in activities previously enjoyed
- Lack of desire to take care of oneself
- Thoughts of self-harm
If you notice symptoms of anxiety or depression in yourself or your child, ask for help. A mental health professional can help identify triggers of anxiety and suggest ways to cope. They can also help develop strategies to reduce feelings of depression.
How does SMA affect mental health?
Children with SMA experience mental illnesses at the same rate as other children. Separation anxiety seems to be the most common mental health condition among children with SMA. But having a chronic condition increases the risk of having periods of poor mental health even without a mental illness.3
Every child with SMA is different and experiences different emotions in response to life events. Common ways SMA can negatively affect mental health include:4-6
- Lack of control over symptoms
- Anxiety about future problems (also called anticipatory grief)
- Low self-esteem and self-confidence
- Lack of independence
- Social isolation and not fitting in at school
How can children with SMA stay mentally healthy?
Poor mental health increases the risk for other health problems. It also leads to lower quality of life.
Taking care of mental health is important to maintain your child’s overall health. Developing coping mechanisms is a valuable way to stay healthy during difficult situations.2
Every child with SMA is different, and there is no wrong way to cope with emotions. Changes in care and symptoms over time may change what coping mechanisms they use. Talk to a therapist or counselor to discuss healthy ways for your child to cope. Coping mechanisms that may help children with SMA include:2,5,6
- Maintaining optimism
- Developing a positive sense-of-self and body image
- Joining support groups
- Building relationships with friends and family
- Practicing mindfulness
- Eating well, staying hydrated, and exercising
- Finding tasks to tackle independently