In 2019, one of our kids got sick with something that was difficult to diagnose. After weeks of doctor visits, trips to the ER, and a hospital stay, we got a diagnosis of exclusion, which means they’d eliminated every possible disease and condition they thought it might have been and said, “It’s probably x.” The condition they diagnosed her as (probably) having is, itself, an umbrella diagnosis for kids who present with similar symptoms but who also don’t have a clear diagnosis of something else.
This was a new world for us, and we didn’t know what to expect. The weeks where we had no diagnosis were terrifying, and the diagnosis we got was confusing. We didn’t know whether our daughter would have this condition for her entire life or if she would recover quickly. We had to educate ourselves about the intricacies of the immune system and the different presentations of this particular disease.
It was lonely, and while our daughter felt better on medication, for a long while, we were waiting for the other shoe to drop. Doctor visits and blood work were frequent, and we didn’t know how things would go once we started weaning her off medication. Even once she was completely medication-free and seemed completely better, it took several more months for us to start feeling secure in the idea that this illness was, in fact, behind us, while still acknowledging that it could come back at any time without warning.
It’s been almost exactly five years since the start of that difficult time, and these days, you would never know our daughter had been sick. As her parents, though, the trauma of those days never completely goes away. Neither does the drive to educate about rare diseases and to help be a guide and listening ear to parents who are searching for a diagnosis for their own child. There are a few things I took away from this experience, and as Rare Disease Day is February 29, I feel it’s appropriate to share them now.
Hospitals don’t always have the answer.
The first time we took our daughter to the ER, I remember feeling, finally, we’re going to find out what’s going on! Nope. Wrong. They sent us home without a clue, telling us it was just back-to-back viruses. I knew that wasn’t right, and it was something else, which brings me to my next point…
Parents know their kids best.
Doctors are experts in their field, but they aren’t experts in your kid. You are the one who knows what your kid is like when they have a regular illness, and you know when something seems beyond what’s typical. Doctors need to partner with you, not dismiss you. And it’s up to you to advocate for your kid. If your gut tells you something’s wrong, listen.
The simplest show of caring can make a world of difference in someone’s otherwise difficult day.
Our daughter needed a procedure that was frightening for us. While we were in the recovery area, some representatives from Chai Lifeline came over to see how we were doing. Though our daughter was not dealing with a condition that Chai Lifeline typically sees, they took her name for davening and sat with us as we waited for our daughter to wake up from anesthesia. Talking about our experience with them helped lift some of the heaviness we were feeling that day, and it made us feel less alone in those moments.
We’re lucky that it’s part of the fabric of Jewish life to do the mitzvah of bikur cholim, and that we have organizations dedicated to all aspects of that mitzvah. But bikur cholim doesn’t need to be elaborate. If you have a friend or family member who is going through a difficult time, even the smallest of check-ins can go a long way to helping them feel cared about. It doesn’t take much.
You are not alone.
The more we shared our experience, the more people shared with us their own experiences. It feels lonely when you first learn about a health issue because most families don’t publicize that they, too, are dealing with something similar, or have dealt with it in the past. It’s a club no one wants to be part of, but the truth is, most people are. If you are reading this and feeling lonely or isolated because of a health concern, please know that you are not alone.
Thank G-d, our daughter is healthy today, but I won’t deny that my heart skips a beat every time one of our kids have a fever for a few days without a clear explanation. My brain goes from zero to “one more day of this, and I’m calling the rheumatologist.” It’s not logical, but I don’t think a parent ever completely moves past the trauma of one of their kids being seriously ill. Rare Disease Day is meant to be a time to share about these diseases, educate, and help others feel less alone. It’s called Rare Disease Day, but to be frank, it’s not that rare to be “rare.” I see you, other rare parents.
Shira Zwiren works in marketing and has loved to write from a young age. Around the edges of her day as a professional and a mom of three adorable kids, she tries to find time for personal creative writing and art. Follow Shira on Instagram: @myjewishjoy.
