healthy lifestile

10 Ways My Life has Changed Since I was Diagnosed with a Primary Immune Deficiency


1. People don’t invite me places anymore. A lot of my friends were worried about me during my diagnosis journey. I got invited to lunches and on shopping trips, and tons of people who missed me sent messages. This, though, abruptly stopped when we found out it was CVID. Suddenly, I was horribly, horribly alone with my disease. Everyone thought I would get them sick, even though it was even more unlikely than before. I usually get sick with stuff most adults can fight off and get reinfected over and over from making stupid mistakes, like not replacing my toothbrush after an illness.

2. I suddenly know more Latin. People say Latin is a dead language, but that’s definitely not the case in medicine. I knew some Latin when I got my diagnosis, but my fast-talking, wonderful immunologist is always introducing me to new words I have to take apart and study, like lymphocyte. I always feel self-conscious at the doctor and afraid to ask questions. Partially, I don’t want to know how bad this is since their faces tell me it’s horrida vultum. I also get too stunned by the fact that there’s actually something wrong with me to remember to ask more. Latin roots have become my good friend, since I can look them up and dissect a word without reading scary articles on Google.

That’s my hand sanitizer, and yes, I’m a grownup.

3. My hands are always chapped and ugly. I need to use sanitizer constantly, especially at work. I’ve tried so many lotions, but nothing helps. I have nightmares about clients seeing them during handshakes. Doorknobs, faucets, keyboards, mouses, steering wheels, and cell phones are nothing but magnets for disease to me now. All I have to do is touch a doorknob some snot-nosed kid who wipes back-to-front touched, and I could be sick for two weeks, whereas that kid might only be sick for a day. Great for the kid, they get to stay in bed and maybe miss school, but for me, it means days without pay and an ER visit to make sure I don’t have an infection coursing through my system toward my heart.

4. I’m infantilized. I spent my whole life battling phobias and depression, trying to prove I was strong. As an adult, emotionally I got stronger every year, even though my body was battling a strange illness that made it harder to fight my feelings. Now that I have this diagnosis, some of my doctors and pretty much everyone I talk to treats me like a child. I know they’re just trying to help, but man, it feels patronizing!

“Do you know you should always wipe front to back?”
“Yes. I’ve been doing that since I was potty trained.”
“Well, it’s important.”
“Do you know how to wash your hands correctly?”
“PBS taught me in 1994.”

Everyone has also felt the need to tell me how serious this is at least 10 times, as if “You could die” isn’t enough incentive to do shit that feels insane to me, like hum  the “Happy Birthday” song to myself as I rub soap on my stinging hands just to get the timing right.

5. I’ve stopped going out. Whenever I go outside, CVID has made me feel like I have a target on my back. I don’t enjoy as many things as I used to, and I feel like an open, festering wound. I’m afraid to go out shopping, to try on clothes, to be in crowds, even to give people hugs, even though I need hugs more than ever. On the rare occasion that I do get asked out, I’m struck with a sense of dread and usually decline, favoring curling up in a bed and watching the entire series of Bob’s Burgers for the umpteenth time.

6. I’ve become very familiar with my veins. I’ve always been a “hard stick.” I have deep veins and as a result, I became afraid of needles. That’s one of the fears I overcame so that I could be a regular blood donor. Now, however, needles are a huge part of my life and my saviors. Have have only two veins that work, and I know exactly where they are. I can tell which one will be easiest for them to stick. Their names are Sasquatch and Mothman since they’re hard to find and there’s little evidence they exist.

Opening a door with my elbow.

7. I’ve learned how to do almost everything with my elbows. I have to use my chapped hands to type, but I’ve learned to do as much as possible without touching a single surface. I can turn faucets on and off, open doors with handles, and overall just look like a jackass in public restrooms, all without using my sore hands.

8. I cry more than I did when I was an infant. I was an infamously unhappy baby, colic and all, but now, in full-blown grief for the lost hope that my illness was curable, I’m an even unhappier adult. I can put on a brave face at work and in front of my loved ones, but I cry alone in the car, in bed at night after my partner falls asleep, and in moments where my mask breaks. Just this week alone, I’ve cried in stores, in my car, in front of my bosses, at my desk, and more!

One of the many texts I sent from the ER.

9. I got funnier. I was always funny, according to others, at least, as a woman I was taught never to brag about myself, but the last time I was in the ER, I realized I was funnier than ever. I made pretty much everyone laugh, the nurses, the doctors, even my terrified partner, who kept me happy the whole time.

10. I’m not alone anymore. Sure, I’m scared. I don’t get out much. I’m terrified of my own fragility and mortality, and of the IVIG therapy that I’ll have to have injected into my stomach via four shots once a week and my upcoming open lung biopsy to check for GLILD, but I’ve found a community too. I’ve read blogs by other people like me who are feeling the same things I’m feeling. I have a team of good doctors committed to helping me get better. As of today, I also have a wonderful grief counselor to help me process my grief for the hope that I was sick with something curable, the loss of a recent friend to suicide, and the loss of my grandmother, who was one of my best friends. Now that I have a diagnosis, I also know what’s wrong. Still, though, it gets to me. Recently, I called my doctor and wept. I told her I’d lost my will to live. That I was scared. That I felt like things would never get better. That I wasn’t sure treatment was even worth it. I’m clinging to every word she said: “Everything you’re thinking. Everything you’re feeling. Everything that’s happened to you . . . it’s all normal for people like you. Everyone with CVID feels that way. But they become okay. You’re going to get better. I promise you. You’re not alone. You’re going to be okay. Hang on.” I will.

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