Struggling with fantasy vs. reality as an ANCA vasculitis parent

Karna Karlsrud, left, poses for a photo with her daughter, Clea, who has vasculitis. (Photos courtesy of Karna Karlsrud)

This is Karna Karlsrud’s story:

When I adopted my beautiful daughter, Clea, 23 years ago, the social worker told me in many conversations that fantasy is worse than reality, so I should practice telling my child her birth story, aka her adoptive story, when she was very little. It would become easy and natural for me as a mother to talk about it while my daughter listened. If I didn’t tell her the truth, she would create a fantasy to fill in the unknowns of the reality of her adoption.

Clea receives treatment at the hospital.

Ironically, I’m now the one who battles with fantasy vs. reality instead of my daughter. She doesn’t worry about me — at least, I don’t think she does.

When she was diagnosed with ANCA-associated vasculitis, I was the sole decision-maker regarding medications, infusions, and next steps. But in the five years since, my role has shifted to finance manager and logistics leader. I know a lot about the disease, but I know very little about what Clea experiences. My fantasies about her illness — including her aches, pains, nightmares, anxiety, and rashes — run rampant, as the realities are now mostly hidden from my view.

I must practice patience when she goes to doctor appointments without me, as my mind fills with random outcome scenarios. All of them seem to involve bad news and hours of phone calls to sort out billing, insurance, and copay programs.

I rely on Clea to share information about her medical team’s point of view and next steps. Does she tell me everything? I don’t know. My fantasies become stories that are so hard to control in my head. It’s difficult to keep up my brave face. “Everything will be all right,” I tell her. I don’t know what else to say.

Parenting a fiercely independent, brave, and intelligent young woman who has a very serious rare disease is challenging for us both. Too often, my worst fantasies — neutropenic fever, hospitalizations, risky choices — have become realities. I try to let Clea take the lead in managing her appointments and decisions about her treatment plan, but not freaking out about her young adult decisions (restaurant work, tattoos, and now ear gauges) has become my new reality. So many choices that turn my insides upside down. And yet, she’s so brave. She’s smiling. She is living and loving.

I am the caregiver. This is her life. As a parent, it’s so much harder to live with a fantasy than it is to know the reality of what my child is thinking and feeling. I have the intense need to protect, fix, and save. Nothing bad will happen to her on my watch.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series.