Cleveland Clinic logo

Finding Community With Primary Immunodeficiency (PID)

Ways to connect while living with primary immunodeficiency

Primary immunodeficiency (PID) — a group of genetic conditions that keep your immune system from working like it should — can impact your life in many ways. You might get sick more often or more severely than others do. Or you might get sick with things others don’t usually get.

Advertisement

Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy

But it’s not just about your physical health. PID might take a toll on your mental and emotional well-being, and your social life, too. Finding a community — with others who have PID and people you’re around every day — can help you manage it.

Seeking community

It might be tough for others to understand the impact PID has on your life. Even if you have supportive family and friends, it can be helpful to talk to people who understand what your daily life and treatments are like. Online groups, national organizations and your healthcare provider are good places to start when seeking support.

They can often connect you to one-on-one conversations with peers, support groups and resources from healthcare professionals. They might also be able to help you navigate your treatment options or financial considerations. You might even find it rewarding to volunteer and get involved in the PID community. Sharing your experiences with others can help them supported and understood.

Should I share my diagnosis?

Some people find it comforting for their close family and friends to know their diagnosis. It might help your loved ones understand any extra precautions you might need to take, or days that you might not have the energy to socialize. Often, friends and family want to know how they can help and support you. If you don’t know where to start, sharing information from trusted organizations or stories and videos of others with PID might help.

If your child misses school often or can’t fully participate in activities, it can be helpful for their teachers to understand their diagnosis. Special accommodations might be available at work or school if you need them.

Advertisement

But medical information is very personal. It’s completely up to you whether you feel comfortable sharing your diagnosis with family, friends, school or work. You should make the decision that’s best for you.

It can get better

Many people with PID say they feel uncertainty and fear when they’re first diagnosed, or when their child is diagnosed. But they also note that these overwhelming feelings don’t last forever.

Getting a diagnosis and starting treatment can be a turning point. It doesn’t happen overnight. But as treatments become routine and you learn more about managing PID, you start to feel better and look towards the future. Both kids and adults with PID can lead active lives.

There are many different kinds of primary immunodeficiencies. You can work together with your care team to make a plan that works for you. Don’t hesitate to ask about any concerns.

Advertisement

Related Content

Two healthcare providers situating a patient on an MRI bed, about to receive an MRI
October 27, 2025/Primary Care
CT Scan vs. MRI: How They Work and What They Show

CTs and MRIs use different technologies to show different things — neither is necessarily ‘better’ than the other

Person standing tall on a yoga mat, doing the mountain pose
October 27, 2025/Wellness
Mountain Pose (Tadasana): Benefits and How To Do It

Stand tall and feel grounded with this foundational yoga pose

Wasabi root partially ground up on a mini cutting board
October 24, 2025/Nutrition
3 Wasabi Health Benefits

Wasabi root may protect against cancer, food poisoning and memory loss

Black and white chess pieces, with arrows indicating they're going in opposite directions
October 24, 2025/Mental Health
Cognitive Dissonance: What It Is and How To Cope

If you’re torn between contradictory beliefs, questioning your decisions or feeling ashamed about your choices, you may be experiencing cognitive dissonance

Person holding black-bristle toothbrush and jar or oil
October 23, 2025/Oral Health
Is Oil Pulling Good for You?

This oral health practice doesn’t have proven benefits, and it’s not a substitute for brushing and flossing

Troubled teen sitting on window sill, watching the rain
October 22, 2025/Children's Health
10 Signs Your Teen’s Depressed, Not Moody

Changes in your child’s emotions, behavior, sleep and appetite can all point to depression