Chapter Four: Torrential
I connected with Nora through a mutual friend. They do amazing work in disaster relief and mitigation in northern California, an area that has been heavily impacted by wildfires.
They have been dealing with their symptoms for over a decade now, and first got diagnosed at age of 17.
“I have four illnesses that I've been diagnosed with. The first was ulcerative colitis, rheumatoid arthritis, fibromyalgia — which is kind of a controversial diagnosis, still — and then an illness that is called relapsing polychondritis,” they explained. “Two are in remission, and I actively live with the other two on a day-to-day basis.”
Though they first started noticing symptoms at age 15, the true timeline is not really definitive, they explained.
Especially when you’re young, it can be hard to situate yourself within a realm of what is normal. Long-term pains and aches might be a strong indicator that something is wrong, but more frequent illnesses and infections here and there are less easy to catch on to.
“I’ve always been a little bit more ill than other kids. When I was younger, I would get sick a lot easier. I had strep throat, I don't know how many times. I just was weaker, and had a lot more issues with pain that I thought were normal.”
“I got this infection in my eyelid that was really painful and embarrassing, because when you're a teenager, anything affecting your face is embarrassing,” recalled Nora.
“My eyeball started to swell up, and then I had to go to the emergency room. And it turns out that that condition, uveitis, is actually a primary way in which ulcerative colitis can affect other organ systems. So that's when my primary care doctor, at that time, started to look at the symptoms together and suspect that maybe there was something up.”
Again, pain and its causes are not merely physical. Nora’s symptoms were not the result of any incident or injury to their body; they hypothesized that a particular traumatic experience as the main catalyst for their first symptoms.
“I didn't really have a typical childhood. I went through a fairly traumatic situation that probably actually triggered the onset of those symptoms. I sometimes wonder if maybe I wouldn't have become sick quite so early on if that hadn't happened. The ‘What if?’ is definitely something that has followed me throughout my adult life.”
Nora recalled getting sick in the middle of the school year, right at the end of the swim season, which ended their career as a student athlete.
“The impact on my life as a teenager and a young adult was pretty instantaneous,” they said.
“Swimming had been a really powerful escape for me from the home situation that I had, and so especially my senior year, when I was getting that finalization of the diagnosis, that was really tough,” Nora said. “Right at the same time that I had to stop swimming, pretty much for good, I also had to spend a month a month straight in bed. That was really isolating, on top of the other isolation that I'd already gone through.”
The following years were marked by receiving those diagnoses while learning to live with chronic illness — which, as you might imagine, was uniquely difficult as a newly-matriculated college student.
“I would go through periods where my health would be better, and then periods where my health would be worse. Anytime that my health would be worse, I would end up pretty much stuck in bed and I would have to skip classes; it was really touch and go.”
Nora’s college years were marked by veering between being unable to do anything as their symptoms flared up, and having to do everything in the time that their symptoms were calming down. “There was just no balance on the scales there.”
Post-graduation has brought its own unique challenges, but Nora said they feel they have developed a better understanding of their illnesses and how to manage their symptoms.
“For the most part, I've really been able to find more balance in living life day-to-day, in part because I know how to manage my illnesses a little bit better now,” they said. “Weather, especially for rheumatoid arthritis, can be a huge trigger for me. And when I lived in upstate New York, that was actually the worst place for me to be, because the changes of the seasons especially would really trigger my flare-ups with arthritis.”
They ended up moving around quite a bit post-grad, spending some time in China before being stranded in California at the onset of the COVID-19 pandemic.
“I was lucky to be in the Bay Area, where the moderate weather really enabled me to be the most physical I'd ever been able to be. I felt pain, but it was the most able-bodied I'd ever been.”
Things still aren’t easy, of course: access to healthcare in the United States is often tied to employment, but being chronically ill at work remains hugely stigmatized. For Nora, this creates a vicious feedback loop between trying to get income to even be able to access healthcare, then needing to face that stigma in the workplace.
They ended up moving elsewhere for a job; the place they live now is a lot more prone to heat, causing flare-ups.
“My job I just left, I was working in an intersection between public health, climate change and disaster relief,” they explained. “I actually couldn't access health care on my own without it being a whole thing, my employer didn't have my insurance figured out. They weren't used to having chronically ill people as part of their staff.”
Nora closed our conversation by calling attention to the need for expanded healthcare access, which remains a huge barrier for chronically ill people to receive the treatment and care they need.
“My quality of life has always been best when I have that consistent access to health care and the consistent ability to listen to my body a bit better without having to worry about medical debt or having to drive three hours for an appointment, or having it all be reliant on employment,” Nora said. “If we were able to remove those institutional barriers, it would definitely [improve] health outcomes for a lot of people.”