On the outside, Jeffrey was so beautiful and looked so normal. But inside, his immune system, his lifeline, was seriously flawed.
Primary Immunodeficiency is known as an invisible illness—most patients “don’t look sick,” but they may be suffering from “invisible” internal symptoms that affect all ages. We’ve heard time and time again from our patient community that because they don’t exhibit any obvious external symptoms, their friends and family don’t understand the full extent of their disease.
Understandably, it can be extremely frustrating if support from your network is not as forthcoming as you need it to be. As a patient, know that you must keep persevering and stay focused and positive to seek out answers or a proper diagnosis. You are your own best advocate!
If you know someone who is living with PI, respect their boundaries and take time to learn about their illness so you can better understand what they’re going through and offer empathy and help. Ask questions if you’re curious! The more people who are educated about PI will help to lead to better diagnosis and treatment options for those who might not know they’re living with an invisible illness.
No matter their age, a person is not defined by their invisible illness or disease diagnosis.