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Addressing mental health

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Having a chronic health problem like PI can affect your mental health. It's important to know how to take care of your mental and emotional health and when to get help from a professional.

How PI affects mental health

It's normal for people with PI to deal with both physical and mental health issues. Not knowing when your health will get worse and spending a lot of time on medical appointments or treatments can make it hard to live your daily life. Missing out on time with friends and family, having to put off school or work, and struggling to reach your goals can make anyone feel annoyed and discouraged. Studies show that stress can increase inflammation, and reducing stress can actually make your immune system work better [16].

To make things even harder, it can be tough when others don't understand your condition because PI is often a health problem you can't see. You might look healthy on the outside, but inside, your body is working hard to stay well. This difference can lead to people not understanding or supporting you. It's easy to see why living with PI can be hard on your mental health.

People with PI may have mental health challenges because of [17]:

  • Medical emergencies and not knowing what to expect with their health.
  • Feeling alone physically and emotionally.
  • Problems with relationships.
  • Missing important events in life.
  • Financial problems.
  • Not having good relationships with their healthcare providers.
  • Changes in who is there to support them.

All of these things can lead to feeling lonely, annoyed, not valued, and powerless.

Improving your mental health

Keep up with your social life and stay in touch with friends, family, and people your age. Keeping up relationships helps you feel less alone and helps others understand what you're going through.

You may not always have the time or be able to hang out with people in person. Find safe and easy ways to connect with others. You can use online options like video calls with family or join social media support groups. Also, ask others to be understanding of your health needs.

It's important to tell your loved ones how they can help you and talk about the problems you have because of PI. Be kind, and remember that PI can also be hard for your loved ones. Make a plan for how you can deal with problems together and ask others for help.

When you have the support and understanding of your friends and family, you can live a happier, more meaningful life.

Here are some other things you can do to feel better:

  • Do some light exercise like walking, yoga, or cleaning.
  • Listen to music, read, watch a movie, do a craft, or cook something fun.
  • Write about your feelings in a journal.
  • Try meditation or mindfulness.
  • Spend time outside in the sun.
  • Find a new hobby.
  • Be creative with art, music, or other activities.
  • Look for support groups for people with long-term health problems.

Seek support

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

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When to get professional help

Studies show that people with PI are more likely to have depression, anxiety, and symptoms related to trauma compared to people without long-term illnesses [18].

Depression can show up as:

  • Anger, being easily annoyed, not being able to handle daily stress, and having negative thoughts.
  • Losing interest in school, work, or hanging out with friends, not taking care of personal hygiene, feeling bored, and staying away from others.
  • Feeling very sad, hopeless, and empty, having constant unwanted thoughts, and crying a lot.
  • Changes in sleep and eating habits that are not related to other medical conditions.

Anxiety can include:

  • Worrying or being scared about everyday things that you can't control.
  • Having mixed feelings, trouble making choices, and difficulty focusing.
  • Doing things over and over, like counting, checking, and collecting things.
  • Fast heartbeat, trouble breathing, feeling restless, and having panic attacks.

It is important to get help from a mental health professional if these symptoms affect your daily life, like work and relationships, stop you from doing daily tasks or taking care of yourself, or lead to using drugs or alcohol to cope. A trusted friend or family member can help you recognize when you need professional help and can assist with finding the help you need. Your primary healthcare provider may be able to handle initial treatment, such as getting you started on medication, until you find a mental health provider.

Finding the right mental health provider

Finding a mental health provider to work with can feel challenging. The first step is understanding the difference between different types of providers. Here are some of the most common types of mental health providers:

  • Psychiatrists (M.D. or D.O.): Psychiatrists are medical doctors who can diagnose mental health conditions and prescribe medication. Some also provide therapy. They are very helpful in making a diagnosis and helping you set up a treatment plan, especially if that plan includes medication.
  • Psychiatric nurse practitioners (PMHNP): These are nurses with special training who can diagnose mental health conditions and prescribe medication.
  • Psychologists (Ph.D. or Psy.D.): These professionals are trained to do psychological tests, figure out what's going on, and provide psychotherapy (talk therapy). They usually can't prescribe medication, but they are experts in therapy and in ways to change your behavior that have been proven to work.
  • Licensed clinical social workers (LCSW), licensed mental health counselors (LMHC), and licensed professional counselors (LPC): These professionals provide talk therapy, teach you how to cope with problems, and give you emotional support. They help you deal with stress in your life and improve your relationships.
  • Marriage and family therapists (LMFT): These professionals focus on how relationships affect your mental health. They often work with couples or families to help them communicate better or feel more connected.
  • Pastoral counselors or faith-based therapists: These professionals combine spiritual advice with regular therapy for people who want their faith to be part of their healing process.

Mental health providers might offer these types of therapy:

  • Acceptance and commitment therapy (ACT): Accepting your feelings and trying to change your actions.
  • Cognitive-behavioral therapy (CBT): A structured therapy with specific goals.
  • Mindfulness-based cognitive therapy (MBCT): A type of CBT that uses being aware of the present, meditation, and breathing exercises.
  • Mindfulness-based stress reduction (MBSR): Meditation and yoga classes to lower stress, used with other therapies.
  • Somatic or body-centered therapy: Breathing exercises, meditation, dance, and other movements that connect your mind and body to improve your feelings.

Once you know the type of provider you’re looking for, here are some tips for getting specific names:

  • Ask your healthcare provider(s) to suggest mental health professionals who have experience treating people with chronic illnesses.
  • Check with your insurance company to see which mental health professionals are covered by your plan or if your plan offers online therapy options.
  • Look through online lists like Psychology Today, Zencare, Therapy Den, or the National Register of Health Service Psychologists. These directories let you search by specialty, location, insurance, and treatment type.
  • Get in touch with groups that support patients. They may have mental health resources or suggestions from the community.
  • Many employers offer Employee Assistance Programs (EAP) that include short-term counseling.

When you contact a mental health professional you might want to work with, it's a good idea to ask about insurance and payment options before you book your first appointment. Here are some questions to ask:

  • Do you take my insurance?
  • Are you in my insurance network or out of it?
  • If you don't take insurance, can you adjust your fees based on my income?

Note that it is more common for a mental health provider to not take any type of insurance than for other kinds of healthcare providers. However, many mental health providers who do not take insurance offer a sliding scale fee instead. A sliding scale fee means the provider changes the price of their services based on your financial situation. This makes therapy more affordable. Some mental health professionals also offer lower fees for students, people with chronic illnesses, or people who are unemployed.

Being honest about your financial needs helps make sure you can afford treatment and keep going for as long as you need it.

The connection between a mental health provider and a patient is a key factor in successful treatment. It's okay, and even a good idea, to talk to a few different mental health providers before deciding who to work with.

During your first meeting or phone call, ask yourself:

  • Do you feel secure, valued, and like the provider understands you?
  • Does the provider seem to know about chronic illnesses or want to learn more?
  • Do they explain how they approach therapy and what you can expect?
  • Are they willing to work with your medical team if needed?
  • Do you feel able to be open and honest with them?

If you don't feel a good connection, it's perfectly fine to find someone else. Therapy works best when you feel understood and supported.

16. Alotiby A. Immunology of stress: A review article. J Clin Med. 2024;13: 6394. Available: 10.3390/jcm13216394
17. IPOPI. Primary immunodeficiencies and psychological management. In: International Patient Organisation for Primary Immunodeficiencies [Internet]. IPOPI; 10 Jan 2019 [cited 27 Jan 2026]. Available: https://ipopi.org/primary-immunodeficiencies-and-psychological-management/ 
18. Manusama OR, van Beveren NJM, van Hagen PM, Drexhage HA, Dalm VASH. Psychological symptoms in primary immunodeficiencies: A common comorbidity? J Clin Immunol. 2022;42: 695–698. Available: 10.1007/s10875-022-01207-7

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. Additionally, links to other resources and websites are shared for informational purposes only and should not be considered an endorsement by the Immune Deficiency Foundation.

Adapted from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition 
Copyright ©2019 by Immune Deficiency Foundation, USA