Tips for Managing Mental Health With Primary Immunodeficiency

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On August 1, 2025

Implementing these practical strategies can help support your mental health and improve your overall quality of life.

Become Your Own Best Advocate

Whether you’re in a medical or social setting, it’s crucial to advocate for yourself, says Charara. Self-advocacy efforts can involve:

Educating yourself about the condition
Prioritizing your physical and mental well-being
Finding a doctor you’re comfortable partnering with
Getting involved in the PI community
Informing loved ones about the condition and your needs

If speaking up makes you uncomfortable, start by asking for what you need in small ways. Advocating for yourself takes practice, but it’s worth the effort.

Establish a Daily Routine

“Having some structure to your life can help balance out the lack of predictability from the disease itself,” says Charara. You can create a daily routine based on what works for you, starting with a regular sleep-wake schedule, physical activity, and healthy meals at regular times.

“Just leave some room for flexibility in case an infection or medical emergency comes up,” he adds.

Practice Mindfulness

“Primary immunodeficiency is a very distressing, anxiety-provoking condition. So incorporating mindfulness practices — things you can do whether you’re at home, at the clinic, or in a hospital isolation room — can be incredibly beneficial,” says Charara.

One good option is meditation. Not only can you meditate anywhere, but research shows that meditating regularly may even help strengthen your immune system.

Control What You Can — and Accept What You Can’t

When you live with a chronic condition, a lot is out of your control. That’s why it may feel good to take the reins of parts of your life that are in your hands.

For example, while you can’t change how others respond to the condition, you can control who you choose to have around you.

You can also exercise control over your habits and coping strategies, so make an effort to establish daily rituals and stress-reducing activities that you enjoy — and that empower you. (Meditation is a good place to start.)

Explore Creative Pursuits

Research has found that exploring your inner creativity can help boost mental health and well-being.

“Creative exercises can be very helpful in the setting of chronic illness,” says Charara. “When you go through ups and downs, putting it out there in artwork or in a book or in a song — whatever creativity looks like for you — can be a very healing process.”

Stay Socially Connected

According to the Immune Deficiency Foundation, staying connected to your friends and family — even virtually — can help reduce your risk of social isolation, which can contribute to loneliness and have other negative effects on your mental health.

If you aren’t able to spend time with loved ones in person, opt for phone calls or video visits. If giving them a ring or being on camera isn’t your thing, you can text, send letters, or play online video games that have a chat function.

Charara also recommends joining a support group to connect with others who “get it” to feel less isolated. You can join an online support group from the comfort of your own home.

Lean on Local and National Resources

The International Patient Organisation for Primary Immunodeficiencies suggests taking advantage of resources that can make life with PI easier, including social support services.

For example, local mental health services may offer support groups for people with a chronic illness. Or career services may offer employment counseling to help you find a job with flexible work policies. Take some time to research what resources may be available to you in your community.