“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health.
As Catherine Ames described it, this was quite a scene. She was hospitalized (again), and so weak and full of pain that she could barely walk. It took three Navy men holding her up to complete her daily walk around the ward. Her concerned mother hoped she wouldn’t lose her balance and fall. But all Ames could think about “was how this was the closest I’d been to cute guys in months.”
That was the beginning, the very first paragraph in the very first essay Ames, 24, wrote for the University of Southern California’s student newspaper, a little over two years ago. That entry was the start of “Chronically Catherine,” a recurring column Ames has written for the Daily Trojan ever since.
The column was inspired by Carrie Bradshaw, Ames admits. But it was also intended as a way to make friends at USC as a transfer student during the pandemic. “I was like, a-ha, I’ll just have them come to me. And sure enough, with my first column, I got a message from somebody who was like, ‘I’ve never seen somebody write about being a disabled student in the Daily Trojan.’”
And yet, “Chronically Catherine” has far exceeded those ambitions. Her column — which captures Ames’ experiences dating, making friends, managing chronic pain and being a college student with a rheumatic disease — got her invited to speak at national conferences, including the American College of Rheumatology meeting. She’s been asked to write for other outlets. People have approached her about becoming a patient advocate, going to law school, and being featured in short films. She joined the national board of a budding nonprofit, the Young Patients’ Autoimmune Research and Empowerment Alliance.
“Probably one of the most terrifying things when I first got sick was if I would ever be able to have a career, to hold a job, to make money for myself and to be independent. And it took many, many years but my column has been behind the scenes doing a lot of that work for me,” said Ames, who will graduate in about a month.
STAT interviewed Ames about her tumultuous journey to a diagnosis, how she’s learned to find levity in demoralizing moments, and how disability has changed her college life.
This interview has been edited for brevity and clarity.
During a pretty pivotal time in your illness, you studied abroad in New Zealand. Can you tell me about that turning point?
I was the lead in a musical at my previous university, I finished that semester, came home [to San Diego] for summer and just collapsed. I got so, so sick. And then I had about a month until I was supposed to go to New Zealand. And I was like, ‘Come hell or high water, I’m going on my semester abroad.’ So I pushed it. And once I got there, slowly, that was like the thread that had to be pulled to untangle everything. Everything fell apart.
My joint pain started to get so bad that my knees and ankles started to swell and get red, and my elbows and back hurt all the time. I started to get migraines. I had to sit in the dark, I couldn’t look at a screen. I was getting nauseous, throwing up all the time, and started losing weight rapidly. I would lie down to go to sleep and it felt like there was a horse galloping in my chest. I went to the ER four times to go through step therapy in order to get what I actually needed the first visit, which was a steroid. It just became clear that the health care system there couldn’t help me anymore. And I came home.
When you came back, you had a marathon of doctor’s appointments to figure out what was going on. What was that like?
I went to my primary care doctor who I’d seen all my life and she said, “I don’t know what to tell you anymore. This is now out of my wheelhouse. And I think you should see an immunologist. I know one in Los Angeles.” Within 15 minutes of seeing me and telling him a bit about my health history, he said, “Oh, I don’t even need to test you. You have an immune deficiency.”
That visit led to a same-day doctor’s appointment with a cardiologist down the street who then diagnosed me with POTS [postural orthostatic tachycardia syndrome]. That visit led to a rheumatologist who told me I may have ankylosing spondylitis. This was all the same week. The next week, I saw an EMT who told me that I needed revision sinus surgery, and who told me I should speak to the dysautonomia/POTS doctor downstairs. Then that doctor told me I needed to get an immunologist who specialized in POTS, MCAS [mast cell activation syndrome] and EDS [Ehlers-Danlos syndromes]. That doctor said, “You should go see this other rheumatologist at USC who works with patients like you.”
So in the course of about four or five months, I racked up about eight or 10 specialists. And it became clear that I was not going to be able to go back to school in January. And suddenly, we were fighting insurance to get treatments that I was told would change my life.
How did you feel after getting so many opinions?
It was really confusing to me that I would look in the mirror and see my same body, look relatively the same, but I couldn’t climb up the stairs without help. I could drive sometimes. But other times, focusing that hard or driving when I had a migraine would make me throw up. And it was like, “I feel disabled. Can I even use that word? But I’m not missing a limb. I’m not using a walker. I don’t use a wheelchair. I’m not blind. I’m not deaf. Am I allowed to identify with that word? I don’t know.” So I felt very lonely. I felt like, where are all the other 21-year-olds like me in the world that are going through this? Because I’ve certainly never met one.
What kept you grounded during that period of disorientation?
Humor. My mom took me to every appointment. We would just walk out of appointments like, “Well, I have no idea what that means, but I guess we’ll go figure it out.” One time I was driving home with my mom and it was pouring rain, and I had a migraine. And I had sunglasses on at night because the lights from the cars were too much. And I was like, “Pull over, pull over!” I just retched on the sidewalk and then wiped my mouth and we pulled away. And we both just started laughing about how hilarious of a sight that must have been for anybody walking along the sidewalk. We’d been catapulted into the stratosphere of complex medicine and didn’t know how to deal with it except for just laughing at how impossible all of this seemed (amidst lots of crying, obviously). We found comfort in each other.
Where are you now with your diagnoses and treatment plan?
I am what my doctor likes to call someone with SSRT: some sort of rheumatic disease. My amalgamation of symptoms fits a lot of different diagnoses. So I like to call myself a question mark patient, of which there are so many who, for the purposes of insurance and health care coverage, have to say that they have these diagnoses in order to get medication and treatment. So for insurance purposes, I have lupus.
It’s taken years to fine-tune the treatments that I’m on and to blow through dozens of trial and errors — I’ve probably tried and tried and failed 20-plus medications. The ones that I’m on now are the ones that have taken years to figure out work for me. I’m on 10 or 12 different medications, all of which are really symptom management. All of those treatments have afforded me a quality of life such that I can be a student with accommodations. It’s certainly not given me back the level of independence and agency that I had in my body pre-diagnosis.
I had to figure out what my limits were. I had to figure out what I could tolerate, not tolerate. I had to figure out what time I needed to go to bed and how long I needed to sleep, when I had to time medications, how long I could be out before I needed to lay down. It was really like learning to walk again.
And that was the hardest part, because I no longer felt like an independent 21-year-old. I felt like a teenager living at home, dependent on other people for help. I’ve learned the hard way, after trying to do it myself for most of my life, that accepting help is not a sign of weakness.
STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.
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