Text by Jodi Taub, LCSW, PLLC – Patient and Expert in Primary Immunodeficiency
As we celebrate World Primary Immunodeficiency Week, I am honored to share my insights—not only as someone who lives with PI every day, but also as a therapist with nearly two decades of experience supporting individuals with chronic and rare diseases.
Living with Primary Immunodeficiency (PI) means carrying a diagnosis that is often invisible, misunderstood, and complex. It’s a rare, lifelong condition that impairs the immune system’s ability to fight infection. Yet because we “don’t look sick,” many people make assumptions that can be frustrating, dismissive, or misinformed. One of the best ways to counter these assumptions is through education—and personal storytelling.
Here are some of the most common questions I get asked about PI, along with the ways I’ve learned to respond—with clarity, compassion, and occasionally, a touch of humor.
1. "How do I get people to understand I have a serious health condition when I don’t look sick?"
This is one of the most emotionally charged challenges of living with PI. The reality is that invisible illness can be difficult for able-bodied people to fully grasp. In our culture, illness is often equated with what can be seen, but PI, like many chronic conditions, doesn’t always present visible symptoms.
I often explain that PI is consistently inconsistent. One day I might function well; the next, I could be battling an infection or coping with fatigue from a flare. Because PI can affect multiple systems in the body, symptoms are unpredictable and varied.
Even though I work full time, attend events, and appear “okay,” the behind-the-scenes effort it takes to manage this condition is substantial. From infusions and medications to medical appointments and recovery time, managing PI is like having a second full-time job—one most people never see.
2. "How do I explain Primary Immunodeficiency to others?"
When you live with PI, you often become a de facto educator. It helps to have a few go-to explanations ready, such as:
“My immune system doesn’t function properly, or is missing essential parts, so I can’t fight off infections like most people can.”
You might also add:
“I’m more vulnerable to viruses and bacteria, so I have to be extra careful about exposure, rest, and treatment.”
Keeping it simple and relatable can help others understand without overwhelming them with medical terminology.
3. "Is Primary Immunodeficiency the same as Autoimmune Disease?"
This is a frequent point of confusion. While autoimmune diseases involve an overactive immune system that mistakenly attacks the body, Primary Immunodeficiency is the result of an underactive or absent immune response. PI is typically a genetic or hereditary condition that impairs your ability to defend against infections.
Sometimes people suggest ways to “boost” the immune system—through diet, supplements, or wellness practices which are not applicable to the disease. Although well intended, such comments can lead to resentment. This can be a good teaching moment:
“Actually, I was born with a rare immune disorder. I’m missing parts of my immune system. That’s why I receive immunoglobulin replacement therapy (IVIG or SubQ) to provide the antibodies my body doesn’t make on its own.”
“While some people with PI may also have autoimmune complications, the core issue in PI is an inability to fight off viruses and infections. That is why I utilize masks in crowded public spaces, and need to be cautious when others are sick.”
4. "What do treatments look like for someone with PI?"
Treatment for PI is lifelong and highly individualized. For many of us, it includes Immunoglobulin Replacement Therapy (IgRT), administered either intravenously (IVIG) or subcutaneously (SubQ). This therapy helps replace missing antibodies and reduces the frequency and severity of infections.
Beyond IgRT, patients may also take prophylactic antibiotics, receive vaccinations under specialist guidance, and undergo routine monitoring. Managing PI also means navigating insurance approvals, experiencing medical fatigue, and planning life around symptoms and energy levels.
It’s a full-spectrum experience—not just physical, but emotional and logistical.
5. "How do you manage your mental health while living with a chronic and rare disease?"
This is the heart of the matter. Living with PI requires resilience on many levels. It’s important to build a strong support system, set healthy boundaries, and learn how to incorporate modifications so that you can participate in the things you love. Sticking to routines and incorporating coping strategies such as mindfulness, creative expression, movement, and community connection can help to keep you grounded.
As a mental health professional, I also encourage others with PI to seek emotional support. Chronic illness can take a psychological toll—but we are not without tools, community, or hope. Mental health resources such as individual therapy and peer or therapy led support groups can be helpful.
Our strength is in how we adapt, connect, and care for ourselves.
It’s important to remind ourselves—and others—that living with PI can cultivate extraordinary resilience and strength. Managing a complex medical condition while navigating the healthcare system, enduring physical discomfort, and still showing up for life is no small feat. The determination it takes deserves recognition. You are not just surviving—you are thriving in the face of immense challenges.
Final Thoughts
Primary Immunodeficiency is more than a diagnosis—it’s a daily journey. Awareness weeks like this give us the opportunity to educate, advocate, and inform others with knowledge and empathy. Whether you're a patient, caregiver, healthcare provider, or ally, your voice matters.
Let’s continue to share our stories, challenge misconceptions, and build a more informed, compassionate world—one conversation at a time.
About Jodi Taub, LCSW, PLLC
Jodi Taub, LCSW, PLLC is a psychotherapist with a private practice in New York, bringing over 27 years of direct care experience working with children, adolescents, and adults. She specializes in individual, couples, family, and group therapy, with a particular focus on chronic illness and rare diseases.
Beyond her clinical work, Jodi is an expert lecturer, published writer, and an active mental health contributor for the Immune Deficiency Foundation. She leads the foundation's monthly Get Connected support groups for caregivers, parents/guardians, spouses/partners, and young adults. Additionally, she writes a monthly column for CSL Behring's Vita Series, offering insights on coping with chronic illness and rare disease.
As both a therapist and a patient living with a primary immunodeficiency disease, Jodi brings a unique perspective to her work, combining professional expertise with personal experience to support and empower her clients.