The Mighty Logo

17 Lessons You Learn When Primary Immune Deficiency Is Part of Your Life

The most helpful emails in health
Browse our free newsletters

April is Primary Immunodeficiency Awareness Month. Primary immunodeficiencies (PI) are a “group of more than 350 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly.” PI is considered an “invisible” illness and can affect all ages. Because of a lack of awareness, people can often go undiagnosed for years — continuously falling sick and never knowing why. The “zebras” who live with PI often experience additional recurrent health complications and hospitalizations as a result of their weakened immune systems.

The Mighty has teamed up with the Immune Deficiency Foundation (IDF) to ask our communities what lessons they’ve learned after being affected by PI. Though it’s never an easy road, you can see there’s always something — whether it’s self-advocacy or how to best talk to your doctor — to be learned and shared.

1. “We have learned that you can ‘bubble wrap’ your child and try protect them from anything and everything possible, but then they miss out on living.”– Michelle V.

Michelle's daughter smiling

2. “I have learned that fighting an invisible illness is hard. We have to get up and keep our families going, bring money in, and try to be as involved as we can, otherwise we miss being part of the family. This doesn’t take away from the fact that we are ill and we do need help and support. We zebras are made of strong stuff.” — Debbie E.

Debbie smiling

3. “We have learned that knowledge is key, and being an advocate for your child is a must. However, the biggest thing we have learned is that children are the most resilient, strong, and inspiring people.” — Michelle G. 

Michelle's daughter smiling, flexing her arms

4. “I have learned how to prioritize, that it’s OK not to be able to be the ‘perfect’ working mom, and how to live for myself as well as my family.” — Julie B.

Julie standing next to her horse on a ranch and smiling

5. “I have learned to have patience with people who don’t understand and to show  our daughter that we have to be positive.” — Camilla H.

Camilla with her dogs in the park

6. “I’ve learned that I know my body and health status better than anyone else.  I have the right to set limits on my activities and allow for proper rest when I need it.” — Jill J.

Jill's arm during an infusion

7. “I have learned that while my son’s disease shapes him, it does not define him. And I’ve learned just how strong he is, and just how strong I am.” — Cheryl V.

Cheryl's son working on a laptop in the hospital

8. “I have learned to keep pushing until my son got the diagnosis and doctor he needed. We are not alone, and education is our best defense.” — Katie A.

Katie with her son and daughter

9. “The biggest lessons I have learned since my son’s diagnosis are to never give up, always stay patient, and try to turn ignorance into a teaching moment. Despite the complexity, despite the constant illnesses, always try to make this adventure as fun as possible.” — Valerie B.

Valerie's son laying in a hospital bed

10. “I have learned to never give up hope. I fought so long for a diagnosis. My good days are good, and my bad days can be pretty bad. I want others to know there is life after diagnosis.” — Brenda H.

Brenda smiling in the hospital with a port

11. “I have learned that invisible illnesses can show up as strength and perseverance, even in the youngest of souls.” — Berkeley B.

Berkeley's daughter

12. “Be proactive with your own medical care; most people won’t understand invisible disease.” — Joanne K.

Joanne smiling next to a zebra

13. “The one lesson I’ve learned since my son has been diagnosed is that people can sometimes be completely unaware and unconcerned with others’ health conditions. Parents who send their sick kids to school do not realize how traumatic it can be for my son’s health, and I have learned to be proactive to keep him safe and healthy.” — Meg O.

Meg's son, wearing a medical mask and sitting in a wheelchair in the waiting room

14. “I have learned doctors are just people. They are not always correct or even caring, and it is up to me to assemble my own team of doctors based on my own knowledge of who and what I need to be my best self.” — Kristin D. 

Kristin, sitting with a stuffed animal

15. “I’ve learned that rare does not mean ‘unreal.’ PI is not well-known or well-understood, and our kids who battle it deserve more awareness.” — Kendal H.

Kendal's son laying in a hospital bed connected to an IV

16. “I’ve learned to count your blessings and know life can change suddenly with one doctor’s appointment. You have to live life to the fullest and not stress too much on the ‘what ifs.’” Jackie O.

Jackie's children smiling

17. “Primary immunodeficiency has taught me and my daughter that lives like ours are rare and wonderful.” — Amanda M.

Amanda, her husband, and her daughter smiling

What’s one lesson you’ve learned as someone who’s affected by a primary immune deficiency? Let us know in the comments below.

Originally published: April 20, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home