Navigating the complexities of GPA vasculitis in our marriage

Jordyn, left, and Cody Blagg, five months before Jordyn’s diagnosis. (Photos courtesy of Cody Blagg)

This is Cody Blagg’s story:

It’s complicated.

As I sit here in the emergency room with my wife, Jordyn (our favorite kind of date night), I wanted to write out the thoughts I’ve had during our journey with granulomatosis with polyangiitis (GPA).

Jordyn was diagnosed with GPA six months after we got married. I have lots of thoughts on the subject, as I’m an overthinker. I’m omitting some of them. Writing these out has been therapeutic, but I almost hate sharing them because I’m not the one who’s sick. Feeling like an energy vampire probably contributes to my months-long hesitation in getting it out. Maybe now it’ll weigh on me less and give me room to breathe. But maybe this list will help others.

• I don’t have any more vacation or sick time to go with Jordyn to the ER.
• God, please help us!
• Am I doing enough?
• I’m really sick right now. What if Jordyn gets it?
• I’m afraid I’m going to end up a single dad if we have a kid. I can barely even care for the dogs by myself.
• We could start a pharmacy with all these medications.
• I want to go to [insert event or outing here], but I can’t risk catching something and getting Jordyn sick.
• I hate talking about my life. I bring the mood down with my coworkers or friends even when I’m being positive.
• I wish Jordyn would stop feeling guilty. It’s not her fault. She pushes herself too much most of the time.
• I can’t lose my job. We need the insurance.
• Well, God, thank you for the approval of the Family and Medical Leave Act in the U.S.
• What do you mean she’s still not disabled enough? You said the same thing last year!
• I’ve already talked for 10 hours straight. I don’t want to talk with Jordyn right now. But she’s been stuck at home all by herself. I should stop being a jerk.
• Is this bout of sepsis going to be the one that gets her?
• How bad will Jordyn flare from the stress of losing a pet? Time for the emergency vet. Sorry, bank account.
• Jordyn says she wants to be a cute, little, sassy old lady one day. I hope she can be.
• I’m sick of hearing “I don’t feel good” 100 times a day for the past six months. Stop being selfish, Cody, you only have to hear it; she’s the one going through it.
• Yes, concerned pharmacist, my wife has taken all these meds together. She has a fun autoimmune disease.
• I hate that Jordyn doesn’t like looking in mirrors. She’s still the most beautiful person in my life.
• God, just — just help. Please?

It is a complicated life we live with this disease. It helps to know we’re not alone. People out there are living with thoughts and feelings similar to mine. As care partners, we live this disease by proxy, and we have feelings about it too. I encourage you to write your list! It helps to get it out. Trust me.

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, Instagram, and X for more stories like this, using the hashtag #ANCASpotlight, or read the full series.