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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.
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]:
All of these things can lead to feeling lonely, annoyed, not valued, and powerless.
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:
We coordinate support groups, events, and one-on-one connections, so you never need to feel alone.
Children, teens, and young adults may have unique mental health needs depending on their diagnosis, their symptoms, and their age. Here are some aspects to consider related to PI and developmental levels.
As a caregiver, you have your own needs. Taking care of yourself helps you take care of your child. Don’t be afraid to reach out to your friends, family, or network for support.
IDF offers two free virtual caregiver support groups—one for caregivers of children and one for caregivers of spouses and partners.
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
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