As I plan upcoming work trips, I’m reminded how complex my scheduling is. For many, planning just means booking and showing up. But because I live with a rare chronic illness and juggle multiple roles, my plans constantly shift with medical and work demands. My calendar isn’t just filled with…
Columns
There’s an art form in Japan called kintsugi, which entails repairing broken pottery with lacquer mixed with gold or silver so that the cracks don’t disappear. Instead, they become part of the design. I think about kintsugi a lot, because chronic illness doesn’t just break you once. It…
Those of us with rare conditions like IgG4-related disease often talk about the struggle to access affordable and equitable healthcare, but what happens after we temporarily overcome those hurdles? I say “temporarily” because, as many of us know, the obstacles never truly end. We’re constantly forced to jump through…
Although I live with a chronic illness, I’ve always tried to shape my life with as much freedom and independence as possible. This was true long before anyone put a name to my condition: IgG4‑RD. The ability to make my own choices and decide for myself how a day…
Did you know that 1 in 6 people has a disability? Don’t worry if you didn’t, because about 80% of disabilities are invisible. Invisible or hidden disabilities are those that lack obvious or visible signs, such as using a cane or wheelchair, or having a noticeable physical difference.
My name is Silvia Borgers, and I live in the Netherlands with my husband, our dog, and our cat. Our children have left home, but thankfully, we still see them often. That is the advantage of living in a small country like the Netherlands. My lovely family has been my…
Sometimes, what lingers longest after a symptom flare-up isn’t the pain of my diseases, but the echo of words spoken by others. Words meant to spark positive conversations and encourage and comfort us can instead leave a heavy mark. I constantly remind those around me that living with IgG4-related…
In my childhood, productivity meant going to school, doing homework, getting some playtime in, and ending the day, only to restart the cycle the next day. As I grew older, productivity took on new meaning. It meant checking every box on my to-do list: excelling at work, keeping up with…
Thirteen years ago, I finally decided to confront the neck and lower back pain, fatigue, stiffness, and vertigo that had plagued me since childhood. Endless scans and specialist visits led to vague diagnoses, typically resulting in nothing more than a prescription for physical therapy. Over time, I accumulated a list…
Note: This column describes the author’s own experiences with Rituxan. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In preparation for my upcoming Rituxan (rituximab) infusion, I revisited a symptom tracker journal I started four years ago following…
