GPA vasculitis wreaked havoc in my life, but I’m enduring

Christine MacFadyen’s symptoms appeared 15 years ago, and she was diagnosed five years ago. (Photos courtesy of Christine MacFadyen)

This is Christine MacFadyen’s story:

I was a fun-loving, always smiling, energetic, adventurous woman. I was only 24 and had just graduated with my college degree in early childhood care and education. I was excited to start a career that fed my passion. Then, in 2009, I ended up in the intensive care unit with a medical mystery that had me feeling seriously ill. I was unsure I’d make it through the night.

During my monthlong hospitalization, doctors took lifesaving measures through intense treatments like dialysis, plasmapheresis, steroids, and chemotherapy. Some doctors believed I had Goodpasture syndrome and others believed I had granulomatosis with polyangiitis (GPA) vasculitis. It would be years before I’d find my diagnosis.

Though I was eventually stable enough to be discharged from the hospital, nothing was the same. I was off work for two years because my doctors felt child care wasn’t a good environment for me, considering I was immunocompromised. So I found desk jobs to fill my time until 2012 when, miserable, I successfully spoke to my specialist about returning to my passion. I worked for eight years, but I was frequently home sick, so I painfully had to walk away from my beloved career.

In 2019, I was a shell of the woman I once was. A doctor realized the depth of my unwellness, both mentally and physically, and immediately wrote a referral to the Rebecca MacDonald Centre for Arthritis and Autoimmune Disease at Mount Sinai Hospital in Toronto.

Six months later, doctors there finally diagnosed me with GPA vasculitis.

These last 15 years have been my most difficult, all because I woke up sick one day and never got better.

GPA is not for the weak. This disease takes and takes, leaving me exhausted, defeated, and in intense pain. But I’m trying my best to stay afloat. With effective mental health therapy, a huge support system, and hard work, I’ve had no mental health-related hospitalizations for three years — a huge accomplishment.

MacFadyen is seen during one of her many recent hospitalizations.

Still, I make room to grieve what I’ve lost along the way, such as my fertility, financial stability, the ability to live on my own, and even my former identity. Yes, the old Christine is gone. This new Christine is unreliable due to vasculitis, which stings because I’d taken pride in my reliability. The new Christine doesn’t work at all, whereas I once had vibrant life goals. GPA makes me feel like I’m in someone else’s body. Sometimes the old Christine escapes me, the memory of her steadily growing fainter.

Instead of working at my passion, I’m stuck between numerous doctor appointments, long stints spent in bed, and missing out on special events due to the inability to leave my bed.

There is no cure, so taking one step at a time is all I can do. I didn’t choose this disease, but I can choose how I live each day: I choose to live with whatever is in my control to its fullest.

GPA vasculitis wreaked havoc in my life, but I survived when it should have killed me in 2009. I’m grateful to be around to tell my story today.

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.