Anxiety and stress are common in children and young adults with Duchenne muscular dystrophy (DMD) as they navigate the daily challenges of a progressively worsening neuromuscular disease. Loss of mobility, ongoing medical care, social isolation and fears about the future can all have a significant impact on mental health.
Just because stress is common doesn’t mean it should be ignored. Family members can help by recognizing the early signs of anxiety and stress and finding effective support.
How to recognize signs of stress and anxiety
The signs of stress and anxiety in teens and young adults living with DMD may include:
- Headaches.
- Stomachaches.
- Fatigue.
- Feeling irritable or nervous.
- Moments of excessive worry.
- Difficulty sleeping.
- Not having a good sleep schedule, staying up too late.
- Difficulty concentrating.
- Feeling restless or on edge.
- Avoiding social situations.
- A lack of good personal hygiene.
- Low mood or energy.
- Low motivation.
Any combination of these signs must be taken seriously. Addressing stress and anxiety early on can help keep these feelings from developing into depression.
Who can help provide support?
Consider a multifaceted approach that includes medical, emotional and social support from a range of different people. Reach out to:
Healthcare teams: Support may look like regular sessions with a psychologist or psychiatrist, medication, physical therapy to improve mobility and boost mood and advice from a dietitian to be sure a healthy diet is being followed.
Family members: Families provide unconditional love and emotional support as they share the DMD journey. To start, ask a close cousin, sibling or grandparent if they can spend some extra time with their loved one.
Friends: Peers and school friends are essential to combat social isolation. They offer fun, good company and shared experiences like seeing a movie, celebrating a birthday or playing video games.
Community groups: Support groups are available online or locally to connect people who are living with the same challenges and share their experiences and advice.
Basic tips for managing stress and anxiety in DMD
As well as relying on a community for support, there are techniques available that may help any young adult with DMD who is battling stress and anxiety. These tips are a place to start:
- Adopting a healthy diet and lifestyle.
- Getting enough good quality sleep.
- Learning to breathe through stressful moments.
- Exploring meditation and relaxation training.
- Using positive thinking to manage anxiety.
- Playing adaptive sports for physical and emotional benefits.
- Testing assistive devices to help prolong mobility and autonomy.
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