Taking care of mental health while living with PI

A chronic health condition refers to a health condition that a person will be managing for a long time. Though everyone's experience is different, living with a chronic health condition is often stressful and challenging. People with chronic conditions often spend significant amounts of time attending healthcare appointments and adjusting their daily lives around symptoms and treatment. For caregivers, supporting a loved one, and watching a loved one struggle with health problems, can be an emotional and difficult experience.

Primary immunodeficiency (PI) refers to a group of over 550 rare disorders caused by genetic variations or mutations. These disorders may be inherited or occur spontaneously. When a person has PI, some part of the immune system does not function correctly, causing a person to be more susceptible to infections and other diseases. People may experience infections that can be severe, difficult to treat, and recur after treatment. They may also be at a greater risk for certain cancers and other health problems.

People living with PI often experience significant psychological stress related to the condition, and experience anxiety and depression at higher rates compared to the general population. Many adults with PI report feelings of loneliness and challenges with social functioning. Caregivers of children with PI may experience feelings of guilt or helplessness.

PI is also a rare disorder, and rare disorders often come with additional challenges, including finding specialists with experience treating the condition and additional healthcare costs. Studies have found that people with rare disorders often experience high levels of mental distress. Mental health screenings after diagnosis and throughout treatment are recommended.

Prioritizing mental health with PI

If you or a loved one is living with PI, these strategies may help you recognize and address the ways that the stress and unpredictability of the diagnosis may be affecting your mental and emotional health.

Check in with yourself

Watching for signs of stress in yourself or a loved one is important when living with a chronic health condition. Look for signs and symptoms like irritability, anxiety, tension, loss of interest in activities you enjoy, trouble sleeping, and difficulty concentrating. Pain, fatigue, and stomach problems should always be taken seriously—these can be symptoms of stress, or symptoms of a health problem caused by having PI, such as an infection.

Talk to your healthcare providers

Talking to your healthcare providers about the challenges you are facing should be a part of treatment. This includes things like stress, moods, feelings, and behaviors. Your healthcare team can help you find ways to address things you're struggling with.

Write things down

Make a habit of writing things down. Take notes on your energy levels, moods, and anything that causes you stress. This can help you recognize patterns in how you feel.

Join a support group

Consider joining a support group for people living with chronic conditions or caregivers for people living with chronic conditions. This can be a support group that meets in person or connects online.

Work with a mental health professional

Consider working with a therapist or counselor—a mental health professional can guide you on strategies for coping with stress and the challenges of living with PI.

Take care of yourself

Focus on your overall health by eating well, exercising regularly, getting enough sleep, and avoiding habits that could make PI symptoms worse, such as alcohol consumption or tobacco use. Activities like yoga, meditation, and breathing exercises can help reduce stress (and do not require much time)

At the very least, schedule some time for yourself to relax and do something you enjoy—a hobby, a creative activity, or even something as simple as watching a favorite show, reading, or listening to music.