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7 ‘Hidden’ Things I Don't Let Show About My Life With Primary Immune Deficiency

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Since primary immune deficiencies (PI) are an “invisible” disability, it’s hard to see what I go through on a daily basis. So here’s a glimpse of what you can’t see about my life as I manage my chronic illness.

  1. It’s exhausting. It’s hard to describe fatigue that comes from a systemic disease. But if you think of the last time you were sick — that is what it can feel like to live with a disease like PI where your immune system is always struggling and never exactly “normal.” Imagine feeling like that every day. Then imagine you have more– not less to do– than everyone else to maintain your health. This includes infusions, medications, treatments, appointments, insurance issues and research. And I am never actually ever “done” with these things.
  2. I am usually in pain. I do a lot to manage my pain so I can stay functional, including using a Quell device numerous times a day. I don’t sit or stand too long, and I avoid muscle strain. I take medications to prevent migraines. I use ice every day to reduce inflammation. Still, I always have some level of pain. Sometimes before my infusions, if my levels are low, my knees hurt really bad.
  3. It takes a lot of discipline. I eat what I am supposed to, when I am supposed to. I separate the medications that need to be separated throughout the day. I apply my topical medications twice a day and avoid the sun. I get my infusions every week on time. I avoid crowded indoor places during flu season. My day is structured around my illnesses and it takes a lot of discipline to follow all the rules all the time. Sometimes I want some dairy with my medication, or some high noon sunlight. I would love to go wherever I wanted without fear of getting sick.
  4. My body doesn’t always cooperate. It’s not uncommon for me to end a sentence involving any plans I make with: “As long as I am feeling OK.”  Actually, most plans I make with anyone do end this way. I never actually know how I will feel or what I can or can’t do until the actual day of the event. With any plan I make, I am secretly hoping I can keep my word. I never really know when a migraine, illness or just plain fatigue will kick in.
  5. It can be lonely, scary and frustrating. The winters are the worst. I spend a lot more time home alone afraid of catching a cold or flu. I want to get out and do things, and it can be super frustrating to pass up important opportunities or events I would like to attend because I am immune compromised and there are too many infections going around. It’s hard to always feel like you are missing out, or in some cases, missing friends and loved ones very much. You also don’t know fear until you have a rare disease. Just imagine not trusting that anyone, anywhere actually knows how to help you. Imagine there is little to no research for what you have. It is a lonely and scary situation to be in. I am so lucky to have a treatment for my primary immune deficiency disease; most rare conditions do not have an FDA-approved treatment. Mine is plasma derived, so there are shortages sometimes. It’s also extremely expensive. Indeed, there is a lot you can worry about.
  6. It takes extraordinary courage to do “normal” everyday things. Attending a function, or not running for the door when someone is sick is not easy for me. Even going to a doctor’s visit can take courage when you don’t know what germs are lurking in the waiting room and whether or not the appointment is going to get you sick. Visiting a school or hospital is another simple act that takes courage because of all the germs that can be there.
  7. I carry with me the story of every friend I have lost to this disease. I can’t even give you a number on how many brave and amazing friends I have lost. It’s that many. While I don’t share the details of their stories, theirs have undoubtedly shaped mine. It’s made me want to raise awareness and make things better for other patients. At the same time, I am struck with my own limitations and my own mortality. If only I could be a healthy person raising awareness. Instead, I am always one step forward and two steps back. My only hope is that my efforts make some small difference.
Originally published: March 23, 2019
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