How to Advocate for Yourself When You Have Primary Immunodeficiency

When you live with primary immunodeficiency (PI), daily routines, such as going to school, working, and seeing friends and family, can turn into a potential health risk.

Because PI is rare and you may not have obvious physical symptoms, many people won’t understand what your day-to-day looks like. That’s why it’s important to advocate for your needs — even when it’s not easy.

“Speaking up might feel uncomfortable at first,” says Megan Ryan, 48, a patient advocate for the Immune Deficiency Foundation. She has common variable immune deficiency, one of the many forms of PI. “But every time you do it, you’re protecting your future. You’re reminding yourself and others that your health matters.”

Read on to learn more about the importance of advocating for yourself, and get practical tips for communicating your needs in all areas of your life.

Ryan emphasizes the importance of being the “captain” of your care team, actively facilitating conversations among your providers, to be certain your health needs are understood. “You have to be the one orchestrating communication between your providers and making sure they’re all on the same page,” says Ryan, who manages a team of 10 to 12 doctors herself.

Ensuring your care team is connected is no easy task — especially with everything else you have to manage with PI — but there are ways to simplify the process. Talk to your providers about how to approach this. You may also work with a patient coordinator to send test results to all members of your care team automatically.

When advocating for your treatment with your healthcare team, Ryan suggests asking questions such as:

• What treatment options are available to me?
• Do you care for other people with this diagnosis?
• How long can I expect it to be before I see improvement on this treatment?
• How will you monitor my success with this treatment?
• What do you need me to monitor and communicate with you?
• How would you like me to communicate with you?

Your immunologist will most likely cover all of that. But it can be useful to ask other care team members, who may be less familiar with PI, these questions.

For Ryan, who’s been in the workforce for over 20 years while managing PI, clear communication and thoughtful planning have made a big difference at her job. “I’ve had the best experience when I’ve been honest and shared solutions, not just problems,” she says.

It’s important to get comfortable having open conversations about PI with your coworkers and the HR team at your workplace. “We need people with rare diseases and chronic illness in the workforce,” she says. “We bring a perspective that helps companies. We often come with creative solutions, because we’ve had to problem-solve in our healthcare.”

You don’t need to detail everything about your diagnosis to your boss — “just what’s necessary,” Ryan says, and what you’re comfortable sharing. One helpful way to start the conversation might be, “I’m managing a health condition that affects my immune system. I’d like to talk through a few small changes that could help me stay healthy while staying productive at work.”

• Hybrid or remote work
• A more private workspace to reduce exposure to germs
• The ability to attend large meetings virtually
• An air filtration system in your workspace

Check out the Job Accommodation Network’s SOAR tool to explore more options.

• Plan ahead for cold and flu season. Set up remote work options before infections spike.
• Time your treatments wisely. Try to schedule infusions and appointments on weekends or lighter workdays. Or, if you know you have a large, in-person meeting soon, try to time an infusion for just beforehand, so your immunoglobulin levels are at their highest.
• Use available protections. The Family and Medical Leave Act lets you take up to 12 weeks off for medical needs — either all at once or in smaller chunks throughout the year.
• Set boundaries with coworkers. For example, to minimize exposure, ask that they not drop by your desk unannounced, Ryan says.
• Start conversations early. Don’t wait for a crisis. Proactively suggest solutions that support both your health and your team’s goals.

• Read up on what may be available to you. You may be able to negotiate extended deadlines, additional excused absences, recordings of lectures if you’re in college, private test-taking to reduce exposure, and more.
• Visit the disability resource center early. If you’re a college student, bring a letter from your doctor to campus outlining your condition and needs, and ask about the accommodations specific to your school.
• Talk to teachers or professors ahead of time. “It’s critical to talk with professors and disability services early, before you’re in crisis, to set up supports like extended deadlines or access to online classes,” Ryan advises. It can be helpful to forge a strong rapport with your teachers, so they can better understand you and the condition.
• Use technology to facilitate group work. If you’re not able to work on group projects in person, consider meeting virtually with your classmates and using online collaboration tools.
• Connect with other students managing PI or another condition. Seek out campus clubs, student organizations, or online communities for students living with rare or chronic conditions. Sharing stories and strategies with peers can help you feel less alone.

If you are a caregiver to a young student with PI, you can still implement many of these same steps. Look to the Immune Deficiency Foundation’s School Guide for Students With Primary Immunodeficiency Diseases for tips on talking with your child’s teachers and school administrators.

Advocating for yourself doesn’t stop at your doctor’s office, school, or work. It’s just as important in your personal relationships. Protecting your energy means being honest about what you can handle, even if it means saying no sometimes.

“Saying no to dinner tonight is really saying yes to getting extra sleep, which means you’ll have energy for something else [that may be] more important [to you],” says Ryan. “You’re being honest with yourself.” Turning down large gatherings, such as weddings, reunions, or church events, is also important during cold and flu season, when you’re feeling run down, or simply to protect yourself from additional exposure.

Try these easy ways to communicate your needs clearly and kindly while protecting your health and energy:

• Keep it simple. Saying something like, “I’d love to join, but I need to rest tonight,” goes a long way without overexplaining.
• Ask for specific help. People want to support you but may not know how. Try saying, “Could you pick up a few groceries for me this week?” or “Can we catch up over the phone, rather than getting together in person?”
• Offer alternatives. Suggest low-energy ways to connect, such as a short walk instead of a night out. Then you’re still showing up, just in a different way.
• Give a little context. If loved ones don’t understand, explain gently, “I have a weakened immune system, so I have to be extra careful about overextending myself, even when I want to say yes.”
• Let go of guilt. “Feeling guilty means you care,” says Ryan. But taking time to rest isn’t selfish. It’s essential. “Saying no doesn’t mean you’re letting people down. It means you’re listening to your body,” says Ryan. That way, you can show up in ways that matter to you.

Acknowledging your needs and following through on them takes practice, she says. “Self-advocacy is a skill you build in low-stakes moments, so you can rely on it in high-stakes situations.”

• Coordinating your healthcare team is a vital part of self-advocacy. Clear, consistent communication helps ensure your providers are aligned and working together to support your needs.
• In the workplace, clear communication and knowing your rights under the Americans With Disabilities Act can help you request accommodations that support your treatment and reduce your risk of infection.
• At school, early preparation with disability services and developing a strong rapport with teachers or professors can make it easier to manage challenges.