Inside the Mind of a Person with Common Variable Immune Deficiency (CVID)

By the time I open my eyes my husband has already done the grueling work of getting the kids dressed, fed, and off to school. I’ve missed the workout class I’ve attended religiously for the past 8 years, and, in reality, I could easily sleep several more hours even though I fell asleep before 10 p.m. last night (with the help of pills).

I want to get my body moving and head to the gym because I know what the consequences are if I don’t. My metabolism and genetics are set up in a way that requires constant motion and hard workouts to keep me from significant weight gain, which could lead to additional health issues. Sure, it’s partly vanity that drives my routine. But also the fear of losing more strength and energy than I already have. After all, the doctors did say it was my strong, healthy body that made my recovery from Sepsis possible.

I push myself through a low-level workout, a shell of the athlete I once was. But I also know friends who see me working out wonder “why does she have the energy to workout but she bailed on my party/meeting/playdate?” Well, I really don’t. But a friend once said “energy creates energy,” and I need to force myself to believe that.

I wonder how much else I will be able to accomplish today. I worry about stacks of laundry and making a decent dinner and getting through the pile of work assignments. I worry most about whether I’ll have the energy to pick up the kids after school or if I’ll have to put yet another thing on the shoulders of my spouse. I try to cram in as much business, housework, and errands as I can before I inevitably lay down in my bed sometime between 6:30 and 7 p.m., unable to make it down the stairs for the rest of the evening. “Am I OK? Am I OK? Am I OK?”

My monthly subcutaneous blood plasma infusions were supposed to make things better. And, for a while, they were. This summer I felt pretty great, in fact, apart from the two day treatment periods where I entirely bedridden and unable to open my eyes. But sometime around the dawn of autumn, something changed. I just don’t feel OK anymore.

I walk around in a constant state of anxiety. “Should I be out and walking around? Is this going to make me sicker? Should I be laying down? Should I be sleeping? Will I be able to make it to the meeting tomorrow? The parent-teacher conference? Lunch with my friend?” “Am I OK?”

Friends are skeptical. “How come you have time for X but you don’t have time for me?” My kids are disappointed. “Other moms always go on field trips.” I have to plan and bide my time wisely – and never put myself in a position where I am unable to bail at a moment’s notice.

I wonder if something else is wrong with me. I follow people on social media with CVID and they always seem to have additional ailments: #lupus #fibromyalgia #lymedisease #chronicfatiguesyndrome #syndromes. Is something else in me broken and I just don’t know it? I’m not in any physical pain – I’m just always exhausted. My body is constantly fighting. “Am I OK?”

My pap smear comes back irregular. It happens to almost everyone. But if I have precancerous cells, my body can’t fight them. People with CVID are at a higher risk for cancer.

Chronic illness stops you in your tracks and makes you rethink your future and reshape your dreams. I wanted to do more Spartan Races and maybe run for political office someday. Those things are not possible now. But I don’t want to spend too much time mourning them. People need to shift paths every day – they can’t have the children they want to have, the marriage they want to have, the career they expected. Cancer, car accidents – we all know people who have had to change their lives when something awful and unexpected happens.

I’m so thankful that it’s just me, and not the kids. I know CVID is often hereditary, so it’s very possible my children could develop it as they get older. I hope by then the treatments are better. But rare illnesses don’t get the kind of funding and research that more common diseases have.

I supplement my blood plasma infusions with every vitamin on the market. I go to acupuncture and douse myself in essential oils. I eat clean and sleep a lot.

Here is a random PSA for primary immunodeficiencies in general.

I hope to still be invited to all the social gatherings even though I can’t always attend. Especially if they are at night. Especially if there may be allergens or sick people in attendance. I commit myself to a series of purposeful brunches and playdates in my own home. It’s the best way for me to be social – early in the day and close to my bed.

I’m afraid to travel. I’m afraid of people coughing on airplanes. Elevators. I’m afraid of being left out even though, no, I can’t go celebrate my best friend’s 40th birthday with a weekend in the Poconos. I’m afraid of my children being traumatized by always seeing their mother sick, stuck in bed. But I also know they see me fighting.

CVID is rare. But knowing Emily V. Gordon, filmmaker and wife of Kumali Nanjiani, has it too, makes me feel weirdly better. (Also, if you haven’t seen her film The Big Sick, go see it. They don’t call it CVID in the movie but it is based on real life.) I also just discovered this new blog CVIDIVA which is, well, I guess as fun as this gets.

Life with a primary immunodeficiency is not easy. It’s constantly testing limits, becoming unreliable, constantly fighting with insurance companies and demanding that doctors take you seriously, it’s accepting that nothing will ever be the same (“It could always be worse,” so goes the Yiddish  folktale).

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