Understanding Anxiety, Depression, and Mental Health in Hydrocephalus

In This Article
    Add a header to begin generating the table of contents

    Hydrocephalus presents unique challenges for those affected. We often pay attention to the physical symptoms and medical treatment related to hydrocephalus. However, the mental health challenges like anxiety and depression are often overlooked. It is important to address both the physical and emotional impacts of hydrocephalus to ensure total care and support.

    Anxiety and depression can affect anyone touched by hydrocephalus. This includes children, adults, and the parents, caregivers, and spouses who support them. These problems can affect people who have been newly diagnosed or managing the condition for years. In any case, it is essential to recognize when emotions like sadness, frustration, or anger go beyond typical “blues”. When this happens, it’s a sign that additional support or treatment may be needed. Depression and anxiety deserve thoughtful assessment and treatment alongside hydrocephalus itself.


    The Link Between Hydrocephalus and Mental Illness

    Anxiety and depression are common in people living with chronic conditions. Hydrocephalus is no exception. The link between hydrocephalus and mental health is influenced by a combination physical, emotional, and social factors. Here are some common ways that anxiety and depression show up for those with hydrocephalus:

    • Cognitive Challenges: Hydrocephalus can affect memory, concentration, and executive functioning. These challenges can worsen feelings of frustration, self-doubt, and anxiety.
    • Social Isolation: Many individuals with hydrocephalus feel isolated due to missed social opportunities, frequent medical appointments, or challenges in forming friendships. These challenges can results in feelings of loneliness and depression.
    • Social Comparison and Pressure to Appear “Normal”: Some individuals experience anxiety and depression from trying to keep up with their peers. They want to seem “normal” despite dealing with chronic pain, frequent headaches, and cognitive challenges. The effort to appear “normal” can lead feelings of anxiety, frustration, and isolation. The energy required to keep up can be exhausting and increase feelings of anxiety.
    • Feeling “Different”: Having visible scars and shunts and the overall experience of a chronic condition can make people feel very different from their peers. As one teen described, it can feel like “living life as a “cyborg.”
    • Uncertainty and Fear of Treatment Failure: Anxiety may be closely tied to the uncertainty of living with hydrocephalus. This is especially true for people with shunts who worry about possible shunt failure or malfunction.
    • Frequent Medical Interventions: Repeated surgeries and hospital visits create ongoing fear and stress which can lead to feelings of helplessness and even post-traumatic stress. This can be true for the person receiving treatment as well as their loved ones.

    There are many things about hydrocephalus that can put people at-risk for depression and anxiety. However, it’s important to note that these and other mental health problems can also exist independently of hydrocephalus. Some people with hydrocephalus have anxiety or depression that is unrelated to their hydrocephalus (National Institute of Mental Health). Even so, it is important that both the mental and physical needs of people with hydrocephalus are met.


    What is Depression?

    Depression is a serious condition that impacts how you feel, think, and act. Depression can influence overall well-being. It can make daily activities and medical management more difficult (National Institute of Mental Health). For more information, visit the National Institute of Mental Health’s page on Depression Basics.

    Symptoms of Depression (National Institute of Mental Health):

    • Ongoing sadness or feelings of hopelessness
    • Low self-esteem and guilt
    • Loss of interest in previously enjoyed activities
    • Increased irritability
    • Changes in appetite (either increased or decreased)
    • Sleep problems (getting too little or not enough sleep)
    • Fatigue and decreased energy
    • Difficulty thinking, concentrating, or making decisions
    • Greater sensitivity to pain and cognitive changes

    Depression can show up as adjustment disorder, dysphoria (chronic low-grade depression), or major depressive disorder. Any of these disorders may involve suicidal thoughts (National Institute of Mental Health). They reduce well-being and can interfere with managing hydrocephalus effectively without treatment.


    What is Anxiety?

    Anxiety is a natural stress response. It is characterized by feelings of worry, nervousness, or fear about everyday situations. Anxiety becomes a concern when these feelings are ongoing, intense, or interfere with daily life. Anxiety can present as a general sense of unease or as specific fears about particular situations (National Institute of Mental Health). For more information, visit the National Institute of Mental Health’s page on Anxiety Disorders.

    Symptoms of Anxiety (National Institute of Mental Health):

    • Persistent worry or fear
    • Increased heart rate and sweating
    • Feeling restless or on edge
    • Trouble sleeping
    • Avoiding social interactions
    • Difficulty concentrating or focusing

    Anxiety disorders can range from generalized anxiety to conditions like panic disorder, social anxiety, or post-traumatic stress disorder (PTSD). These disorders can worsen existing challenges (National Institute of Mental Health).


    Managing Anxiety and Depression: A Comprehensive Approach

    Both anxiety and depression are highly treatable, even in the context of hydrocephalus. The right treatment depends on the severity and type of symptoms. Treatment often includes a combination of therapy and medication.

    Seek Professional Help: Regular therapy can help manage anxiety and depression, especially when living with the unique challenges of hydrocephalus. Cognitive-behavioral therapy (CBT) is often recommended for treating both anxiety and depression. It helps people identify and change negative thought patterns while building coping skills. Acceptance and Commitment Therapy (ACT), which focuses on embracing thoughts and feelings rather than fighting them, can also be highly effective, especially when paired with skill-building and mindfulness techniques. Dialectical Behavior Therapy (DBT), which emphasizes emotional regulation and distress tolerance, is another valuable approach. These therapies provide structured tools for managing the emotional challenges of hydrocephalus (National Institute of Mental Health).

    Working with mental health providers who understand the complexities of hydrocephalus is essential for comprehensive care. A specialized therapist can tailor treatment to address the emotional, social, and psychological aspects of living with hydrocephalus. They can help individuals build resilience and maintain a better quality of life. It may be hard to find a therapist who knows hydrocephalus and the emotional, cognitive, and social challenges it can bring. Consider seeking a therapist with experience working with similar problems. For example, therapists who treat traumatic brain injury, chronic illness, and, if appropriate, neurodiverse individuals, sometimes referred to as those living with special needs, might be a good fit.

    “We tried a traditional therapist, but the therapist had a hard time connecting with her because of her language processing issues. We found a therapist who worked with special-needs kids and specialized in anxiety, and it made all the difference.” – mother to a middle school child

    Medication: Sometimes medications like antidepressants or anti-anxiety drugs may be necessary. A healthcare provider can help determine the best approach based on individual needs. Medication works best is combination with other therapy and supports.

    “I was hesitant to bring on a new medication because of everything else I was taking but I decided to give it a try. While I know medication is not for everyone, in my case, with the self-care activities I was doing, it really helped me find calm in the storm.” – adult living with depression and anxiety

    Build a Support Network: Connecting with others through peer support programs like HydrocephalusCONNECT or the Hydrocephalus Association (HA) Community Networks can reduce feelings of isolation. These programs provide a way to connect with trained volunteers who share similar experiences. They offer both practical advice and emotional support from people who truly understand the unique challenges of hydrocephalus. They also bring together the hydrocephalus community for both educational and social events. This helps to build connections and friendships, a proven method for supporting positive mental health.

    “No one understands what it’s like to live with this condition. Talking about brain surgery scares people. But not when you’re in our community. I really value being surrounded by people who understand, and I am so grateful for the friendships I have made.” – adult living with hydrocephalus

    Exercise and Self-Care: Making sleep, a healthy diet, and regular physical activity part of daily routines can improve both physical and mental health. Exercise releases brain chemical that promote overall well-being. Additionally, activities that bring a sense of normalcy can help reduce feelings of chaos and uncertainty (National Institute of Mental Health).

    Mindfulness and Alternative Therapies: Meditation, mindfulness, and alternative therapies like music or art therapy can help with emotional regulation and can help manage symptoms like anxiety and stress. These approaches are especially helpful when used alongside traditional therapy like CBT. The combination provides a more well-rounded approach to mental health care (National Institute of Mental Health).

    “I always felt like I failed at meditation…until I learned that there’s no required amount of time to meditate and that everyone has a hard time tuning out all of the thoughts and to-do lists racing through our heads. Sitting quietly and disconnecting from the world around me for 10 minutes can give me the calm and the energy to continue my day.” – parent of a child with hydrocephalus

    Stay Informed: Educating yourself about hydrocephalus and its mental health impacts can reduce uncertainty and help you feel more empowered in managing your condition.


    Conclusion: A Path to Better Mental Health

    Living with hydrocephalus presents both physical and emotional challenges. However, anxiety and depression do not have to define your experience. With the right support, therapy, and self-care strategies, individuals with hydrocephalus can manage their mental health and lead empowered, fulfilling lives. Addressing mental health alongside physical health is essential for holistic care.

    The Hydrocephalus Association offers resources and peer support to help you on this journey. Remember, you’re not alone—many tools and strategies can help you navigate both the physical and emotional aspects of hydrocephalus.


    Resources


    Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2025. We would like to thank Elizabeth M. McRae, PhD for her valuable contribution and expert input.

     

    Was this resource helpful?

    Yes
    No
    Thanks for your feedback!