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Addressing mental health

Managing your mental health can help ease the stress of living with a serious chronic healthcare condition. It’s important to know how to manage your emotional well-being and when it’s time to seek professional help.

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How can PI affect your mental health?

It is not uncommon for a person living with primary immunodeficiency (PI) to manage both physical and mental healthcare conditions. The uncertainty of managing ongoing health flares and time-consuming medical routines can interfere with daily living. Canceled time with friends and family, delayed education or work opportunities, and difficulty meeting life goals would make anyone feel frustrated and defeated. 

Compounding the stress is the inability of others to understand your condition because PI is often an “invisible” illness. You may look fine on the outside, but inside, your body struggles to stay well. This discrepancy can lead to a lack of understanding or support from others. It is completely understandable why living with a PI can take a toll on your mental health.

Persons with PI may experience mental health challenges due to:

  • Medical crisis and health unpredictability.
  • Physical and emotional isolation.
  • Relationship issues.
  • Missed life events.
  • Financial stressors.
  • Poor patient-doctor relationships.
  • Changes in their support system.

All these scenarios can result in loneliness, frustration, invalidation, and disempowerment.

How can you improve your emotional health?

Prioritize your social network and stay connected to friends, family, and your peer community. Maintaining relationships decreases your isolation and enhances others’ understanding of your condition. 

You may not always have the time or ability to socialize in person. Find ways to connect with others in a safe and feasible way. Use online options such as visiting with loved ones via videoconference or joining social media support groups, and ask others to accommodate your healthcare needs. 

It’s important to describe to your loved ones how they can support you and initiate conversations about the challenges you face due to PI. Be compassionate, and remember that PI may be stressful for your loved ones, too. Plan how you can cope together as issues arise and lean into others for support.

Gaining the support and understanding of your friends and family leads to a more fulfilled, meaningful, and purposeful life.

Other coping strategies you can use to make a significant difference in your emotional health include:

  • Engage in light exercise like walking, yoga, or cleaning the house.
  • Listen to music, read a book, watch a movie, make a craft, or cook something special.
  • Write your feelings in a journal.
  • Incorporate meditation or mindfulness. 
  • Enjoy the outdoors and get some sunlight.
  • Discover a new hobby or interest.
  • Pursue creative expression through art, music, or other activities.
  • Find support and social media groups for those with chronic medical conditions.

Seek support

IDF coordinates support groups, events, and one-on-one connections, so you never need to feel alone.

zoom call

When is it time to find professional help?

Research shows that people with PI have higher rates of depression, anxiety, and trauma-related symptoms than those living without chronic illness. 

Depression is often associated with:

  • Expressing anger or rage, irritability, low tolerance for daily stressors, and negative thinking.
  • Displaying a decreased interest in school, work, or social activities, poor hygiene, boredom, and isolation from peers.
  • Feeling intense sadness, hopelessness, and emptiness, having obsessive thoughts, and being tearful.
  • Disruptions to sleep patterns and appetite unrelated to healthcare conditions.

Anxiety signs and symptoms include:

  • Obsessive worry or fear about everyday events over which you have no control.
  • Ambivalent thoughts, difficulty making decisions, and trouble concentrating.
  • Obsessive and compulsive behaviors like counting, checking, and hoarding.
  • Rapid heartbeat, difficulty catching your breath, uncomfortable energy, and panic attacks.

Seek professional help if these symptoms:

  • Impact daily functioning like work and relationships.
  • Prevent you from attending to daily responsibilities or self-care.
  • Lead to drug or alcohol abuse.
  • Cause thoughts of suicide or harming others.

If you have any of these symptoms, contact a mental health professional who can help guide you through the journey of living with PI. Mental health providers may offer the following types of psychotherapy:

  • Acceptance and commitment therapy (ACT)—mindful acceptance of emotions and a commitment to change behavior. 
  • Cognitive-behavioral therapy (CBT)—structured, goal-oriented therapy.
  • Mindfulness-based cognitive therapy (MBCT)—form of CBT that uses present-moment awareness, meditation, and breathing exercises. 
  • Mindfulness-based stress reduction (MBSR)—instructor-led meditation and yoga to reduce stress, used alongside other therapies.
  • Somatic or body-centered therapy—breathing exercises, meditation, dance, and other movements that use the mind-body connection to improve emotional well-being.

You may also seek a psychiatric assessment or genetic testing for a psychotropic medication evaluation.

This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice.