By Caitlin BenVau, as told to Evan Starkman
One summer when I was 12, a house spider bit me on my upper thigh. By the next morning, the center of the skin there was pitch black, with redness radiating down to my knee and up to my abdomen. In the hospital ER, my parents and I learned that I had necrotizing fasciitis, a flesh-eating bacterial infection. And I'd end up getting it again just months later.
Those infections led me to a formal diagnosis of common variable immunodeficiency (CVID) a week before my 13th birthday. CVID is the most common type of primary immunodeficiency disease in adults. But for some people, like me, the symptoms start in childhood.
The diagnosis didn't scare me too badly. I was a tomboy-ish kid, and one of my dreams was to become a Marine. So I thought of CVID as a risk that I had to be responsible for. I began tracking my symptoms whenever I thought I might have an infection, and I got IV infusions of immunoglobulin to replace the IgG antibodies that my body didn't make.
How I Dealt With Getting Bullied About My Health
Growing up, I was generally able to do sports, music, and go out like other kids. But the switch between when I was healthy and becoming very sick was so extreme. While other people have a slower onset of symptoms to recognize they were coming down with something, sometimes I'd be happy and energetic on Monday, then out for an entire week without a word.
Some kids would accuse me of skipping out on school (to do something fun like go on vacation or see a concert) and lying that I was sick. Those comments really hurt. I never wanted to be isolated. The only thing I ever wanted was to be healthy and involved with all the other kids. So I tried to be open and explain what was going on with my health.
In middle school, people started a rumor that I had AIDS. They thought that any infection I came down with was contagious, even when they understood it was different from AIDS. They wouldn't drink out of the same water fountain as me, and they wouldn't share water bottles with me. Some kids didn't even want to have a locker next to mine! And they'd say it to my face: "My mom says you have AIDS."
I would go back to them and say: "That's not actually true. You should think about this. How do you think that makes someone feel?"
I made it a personal mission to let folks know that their community around them has people that might be struggling with serious illnesses and they should be empathetic. In high school, I started after-school clubs for students who were dealing with illnesses or had family members who were. It felt really good to reach out and connect with people in that way.
How I've Managed CVID as an Adult
As I neared college age, my doctors told me to stay close to home and to my healthcare team. They suggested I consider community college and local careers so I wouldn't be too far from accessible care. To no degree did I follow that advice, even though they were just trying their best to be practical with my diagnosis.
In college, I studied mechanical engineering. I also began giving myself subcutaneous immunoglobulin infusions in the abdomen every two weeks, since it offered a lot more autonomy and independence than the IV infusions I used to receive. I also met and fell in love with my husband, Florin.
Right out of college, I had the opportunity to train and work as test director for the largest modern rocket engine. Seeing my engines fly to space was an incredible point in my life. I was so proud of being part of something bigger than me. Today, Florin and I work for a different aerospace company in Mojave, California. I'm a senior engineer who tests rocket engines. It's what I care about, and I don't think that there's anywhere else I'd rather be.
But for the last year and a half or so, I've gone through hospitalizations almost every other month. I had to get my appendix and gallbladder removed, and I got COVID-19 twice. So I couldn't just suck it up and go back to work. I had to take time off to heal. I felt at times like I was doomed – go home and stay at home. That isn't what I wanted my career and my life to look like.
Fortunately, I've built up really good connections with my teammates at work. They know I have CVID because it's something I talk about with my co-workers and bosses whenever I start a new job. It helps everyone understand what's going on with me if I'm out unexpectedly for a while.
I also found a great therapist who I've been talking to basically since I started work. It's really helpful to talk about those deeper psychological questions, like “Is it worth everyone's time for me to try to be a contributor to society?”
Who I Lean On for Support
My husband has been a pillar for me. When I've been sick, Florin has driven me to doctor's appointments, helped me put my clothes on, helped me shower my hair, kept track of what medication I need to take, and so on.
My friends are super-supportive, too. Some of them who live out of state will fly here and be with us if I need anything or if they know I'm sick. I'm also close with my parents. They've helped me navigate my health insurance, making sure I keep up with the documentation that's needed and scheduling those doctor's appointments.
My mom and my younger brother actually have CVID, too. Their immunodeficiencies are significantly less severe than mine, and they were diagnosed after I was, later in their lives. Being the "guinea pig" of the family, I'd give them pointers like, "Hey, if this is swollen, you should tell the doctor," or "This is how you get the bubbles out of the syringe." I think it helped us grow closer together to understand they weren't alone in this.
Lately I've also been volunteering with the Immune Deficiency Foundation. At one event, I shared my story with other people who have primary immunodeficiencies. I cried and thanked them and got hushed from other people who were crying, too. It really was great to feel a sense of community with them.
How I Talk With Doctors About My Condition
Being able to work with my doctors is something that's really important. I've moved quite a lot for work, and I've met or run into doctors who knew only a bit about primary immunodeficiency diseases or had never had a patient like me.
The doctors always had the skill set to understand and to think through those things, but they didn't always have the most recent information about primary immunodeficiencies. So at times it was on me to give them my medical background and talk about how symptoms might present differently within my body than within someone else's. Immunocompromised patients don't always show typical symptoms, and that makes it harder to diagnose us and help us.
It's up to the patient to be able to literally be patient with their doctor and to make sure that the doctor understands the extent of what's going on — because there've been times where I've definitely had something really bad going on and I was dismissed from the hospital.
I try to stay educated on my health so I can better communicate what I'm feeling when I have infection symptoms and what's happened when I've had similar symptoms in the past. I talk with my doctor as a team member rather than just listening. I try to help in my own way.
Some Encouragement if You're Newly Diagnosed
A diagnosis of a primary immunodeficiency disease isn't the end of anything. It does not mean you can't live your life. It does not mean you can't do the things you want to do. Life's just going to look different for you than it's going to look to the people that are around you. And that's OK.
That doesn't mean you have to be lonely. That doesn't mean you have to close yourself off or feel like you're in it alone. And I think that applies to a lot of people's dreams.
If you're passionate about something, be the first person to go do it. I'd never heard of anyone with an immune deficiency that tested rocket engines to fly into space, so I did it. I fight for the things that I care about, the things I like, because it matters to me.