This story includes discussion of suicide. Support is available if you experience suicidal thoughts, are making plans to self-harm, feel like you or someone you know is unable to stay safe, or are in immediate danger that requires urgent help.
If you or someone you know needs urgent mental health support, the following services are available:
- In the U.S.: Call or text 988 to reach the Suicide & Crisis Lifeline, which is available 24/7. You can also text HOME to 741741 for the Crisis Text Line.
- In the U.K.: Call 111 to reach the NHS mental health services, or call 999 in a life-threatening emergency.
- In Canada: Call or text 988 to reach the Suicide Crisis Helpline.
- International: If you are outside these areas, please contact your local emergency services or go to the nearest emergency department.
If you or a loved one is living with a neuromuscular disease, you are likely familiar with the physical challenges it presents. However, understanding its impact on mental health is equally important. Depression is a serious mood disorder that can deeply affect your daily life and overall well-being. However, by learning to recognize the signs of depression and understanding the available support systems, you can take positive steps toward managing your mental health.
Muscular dystrophy (MD) and depression, a mood disorder linked to persistent low mood and energy, are closely connected. MD is a group of genetic diseases that lead to the breakdown of muscle and increasing weakness over time, which can lead to severe physical and psychological impairments in some people.
Not everyone with MD develops depression, but rates are higher than in the general population, according to Parent Project Muscular Dystrophy. Severe depression can occur in people with several types of MD, as physical and social hardships can cause psychological stress.
These types include:
- Duchenne muscular dystrophy (DMD)
- Becker muscular dystrophy (BMD)
- limb-girdle muscular dystrophy (LGMD)
- facioscapulohumeral muscular dystrophy (FSHD)
- myotonic dystrophy type 1 (DM1)
Depression is a serious mental health issue that can greatly interfere with your relationships, your work, and your daily activities at home. Because of its impact, depression needs to be addressed and treated as soon as you or your family members recognize its presence.
The financial and emotional impact of these diseases can further worsen depression in some people. However, effective treatment for depression is available, and may include psychotherapy, medications, or both.
What is depression?
Depression is more severe and long-lasting than passing sadness. It’s a serious mood disorder in which people feel a sense of sadness or worthlessness; experience changes in their ability to eat, sleep, and focus; and have reduced interest in activities they previously enjoyed.
People with different types of MD and depression may find it difficult to tell whether low energy or mood is due to the symptoms of the condition itself or accompanying depression.
The following table helps differentiate depression from temporary sadness, fatigue, and other effects of MD.
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| Condition/symptom | Primary characteristics | Key distinguishing factors |
|---|---|---|
| Depression | Persistent low mood, sadness, feelings of worthlessness or guilt, and loss of interest in hobbies. | Marked by negative thought patterns and a loss of motivation rather than physical energy alone, as well as persistent emotional distress. |
| Temporary sadness or grief | Short-term emotional reaction to a specific trigger, physical loss, or lifestyle setback. | Tends to come in waves, decreases over time, and allows for moments of joy or positive engagement. |
| MD-related fatigue | Physical and neuromuscular exhaustion resulting from muscle degeneration and low cellular energy. | Driven by physical exertion, motivation and interest remain intact even when physical energy is low. |
| Daytime sleepiness | Excessive drowsiness caused by breathing problems or poor sleep quality. | Directly linked to respiratory or sleep disturbances and improves with targeted airway interventions, such as BiPAP. |
| Apathy | Reduced goal-directed behavior, lack of initiative, and flattened emotional expression. | Common in certain central nervous system presentations, such as DM1, but lacks the distress, sadness, or feelings of worthlessness typical of depression. |
What are the signs of depression?
Symptoms of depression can vary from mild to severe and can present differently in adults and children.
Depression symptoms in adults
Adults with depression may experience:
- an ongoing feeling of sadness and hopelessness
- loss of enjoyment or interest in previously enjoyed activities
- physical symptoms such as headaches or stomachaches
- irritability, moodiness, or aggression
- reduced patience
- oversensitivity or tearfulness
- suicidal thoughts
- impaired concentration, memory, or decision-making
- changes in work habits or schoolwork
- changes in appetite or energy levels
Depression symptoms in children
Children with depression may use different tools than some adults to express how they feel. They may not talk about helplessness or hopelessness or appear sad. This means that depression in children with MD may show in different ways.
Signs can include:
- irritability and anger
- not wanting to engage in fun activities
- troublesome or disruptive behavior
- acting unmotivated
- changes in eating and sleeping patterns
- changes in energy levels
- distractedness
- self-injury or self-destructive behavior
Why may depression occur alongside MD?
Doctors used to associate depression with MD simply as an effect of living with a chronic disease that causes ongoing pain and fatigue. However, more evidence is becoming available that links depressive symptoms with neurobiological and psychological effects specific to MD.
Disease-related neurological and behavioral factors
A study of 857 men and boys with dystrophinopathies — Becker and Duchenne muscular dystrophies — from 765 families found that 44% showed at least one of three selected neurobehavioral issues: attention-deficit/hyperactivity disorder, behavior problems, and depressed mood. Of that group, 40% had a depressed mood.
The study also showed that use of a mobility device was associated with a depressed mood.
In people with neuromuscular diseases such as MD, social isolation and stigmatization can reduce quality of life, according to a 2025 review.
How is depression assessed and treated?
Depression is treatable, and those who receive early diagnosis and treatment tend to have better outcomes than those who wait. Mild-to-moderate symptoms of depression may respond well to psychotherapy, whereas more severe cases may also require psychiatric consultation and medications.
More tools are becoming available. For example, the Brain Involvement in Dystrophinopathies, or BIND, screener poses 18 questions assessing brain-related problems like depression, anxiety, and other behavioral disorders that can occur along with MD. This can be effective in spotting and supporting conditions like depression early on.
Counseling and psychotherapy
For people with many types of MD, supportive counseling is central to managing the parts of the condition that can cause social or psychological impairment.
Some types have periods in which the disease doesn’t progress, known as arrest periods. During these times, vocational training and supportive counseling can help people live active lives and reduce the risk of social isolation.
Psychotherapy includes:
- Professional counseling for psychological or emotional support
- Making life adjustments such as spending more time with family and friends, enjoying nature, staying socially active, and practicing relaxation or meditation exercises
For people who have difficulties with mobility, many psychotherapists offer remote video services, meaning it’s possible to receive treatment without leaving home. You can find a therapist with experience helping people with chronic health problems through a service like the National Register of Health Service Psychologists.
Antidepressant medications
One of the causative factors of depression is dysregulation, or improper functioning, of the neurotransmitter serotonin. Treatment with selective serotonin reuptake inhibitors, known as SSRIs, can boost serotonin levels and may help people manage depression. These include:
- Celexa (citalopram)
- Lexapro (escitalopram)
- Prozac (fluoxetine)
- Zoloft (sertraline)
People already on a medication regimen for MD management should discuss any existing medications with their care team. They can prescribe options that reduce the risk of interactions and side effects.
How can family members and caregivers help?
To support an individual with MD who might be experiencing depression symptoms, the most important factors involve recognizing changes in behavior or emotional state, finding accessible, experienced mental health services, and responding to crises if they arise.
Caregivers can find accessible mental health services for MD by contacting the Muscular Dystrophy Association (MDA) Resource Center. It is staffed by specialists who can help you connect with licensed therapists, telehealth services, and support programs for people with MD.
The MDA also provides support groups for people with MD and their caregivers. Those looking to connect with people in similar situations and feel less isolated can find connection and guidance here.
Discussing mood changes with your healthcare team
The following can help you prepare for your or your family member’s next medical appointment. For those who are not facing an immediate mental health crisis but who are showing persistent mood changes and require ongoing support, try the following:
- Write down when mood shifts started and how often you or the person you care for feels low, extremely fatigued, or disinterested.
- Document how mood is affecting their sleep, appetite, school or work, or physical therapy routine.
- Bring a complete list of prescription drugs, over-the-counter supplements, and physical therapies to their care team.
- Focus on changes that physical fatigue alone doesn’t explain, such as losing interest in hobbies or feeling worthless or hopeless.
Bring these notes to the individual’s primary care clinician or the specialist team at their neuromuscular clinic.
When is urgent mental health help needed?
If a person with MD is showing signs of depression, connecting them with help may be vital for their well-being.
Mental health crises require immediate attention. Thoughts of suicide, forming a plan to self-harm, feeling completely unable to keep oneself safe, or experiencing overwhelming despair are medical emergencies.
If you or someone you know is in immediate danger or experiencing a mental health emergency, please reach out for professional help immediately.
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