Teenagers don’t get arthritis. That’s what Tiffany Peterson kept hearing as that dreadful feeling in her 17-year-old wrists and knees grew excruciating. So she tried to ignore it, popping over-the-counter pain medicines and keeping her head in science textbooks, her hands full in the evening with extracurriculars and a half dozen younger siblings to care for. Then came the hair loss, and a menstrual cycle gone haywire: bleeding three months straight.
This was not normal. But without health insurance, and at a time when online health information wasn’t easily found — Google was only 4 years old — Peterson was left wondering for years what was the matter. It took a breaking point in college for her to marshal the resources to get care and a diagnosis: lupus, a disease she knew little about, and nobody with.
In the decade and a half since, she’s become a patient advocate with a sizable online community at her fingertips. In 2012, along with three other women, Peterson founded a bi-weekly virtual conversation called LupusChat. Patients, caregivers and clinicians from all over the world have tuned in to ask and answer questions in real time about their shared condition and what their lives might look like.
Peterson, 38, has also worked as a consultant or advisor for various pharmaceutical companies working on lupus treatments, including Aurinia Pharmaceuticals.
STAT spoke to her about the early, undiagnosed days, what treatments worked for her, and the value of a social media community when dealing with the unknown. This conversation was edited for clarity and brevity.
You had a whole life going on in addition to what you were experiencing in your body. So what were you like in high school? What were your interests and how did undiagnosed lupus factor in?
I was going to the High School for Environmental Studies in Manhattan. I was obsessed with science, and my childhood dream was to be a marine biologist. I was in, like, all the nerdy after-school clubs: I was in a recycling club and I think I was also in a book club.
To my friends and family, I would complain about my joint pain all the time. So it was something that they were used to hearing. The only thing we could sort of correlate it with is arthritis.
And nobody in your family had lupus, as far as you knew?
Nobody in my family was diagnosed with lupus. And, I’m the oldest of eight children (six on my mother’s side, two on my father’s side). And my mother comes from a really big family — she’s one of 15 children. And no one in our entire family has lupus. So it was really, really puzzling. However, there is a lot of autoimmune disease in my family. There are some people who have thyroid disease.
How were you trying to manage your joint pain by yourself?
I was just taking like over-the-counter Aleve. And it did help a lot. I would just take it, I don’t know, I guess every other day, every day just to manage the pain. Around the time I went to college, my sister was like, “You are always popping these Aleve like candy. I don’t think that’s healthy for you to be taking that all the time.” She was like, you know, on the back of those labels, they have warnings.
And so I stopped taking it and I feel like that’s one of the reasons why my symptoms started to get worse. But also around that time, there was a death in my family. I lost my paternal grandmother. That was a very emotional time period in my life. I was really close to her. And I think the trauma of that also contributed to the progression of my symptoms. It happened during winter time, too, so that doesn’t help because winter does aggravate lupus a lot.
What did you end up studying in college?
The first college I went to was the University of Tampa, in Florida. And I was studying marine science and biology. It was my dream school. It was the first time I was ever really far away from family. It was really difficult because I was on my own, and I didn’t know anything about what college life was like, or what I needed to do. I ran into some complications with getting my books on time which really threw my whole semester off. My mother didn’t have the financial support to be able to help me through it, so I was only there for a semester. And then I ended up moving back home to New York and going to Lehman College. I think I made it two semesters, then my symptoms started to get gradually worse.
What new symptoms started coming up?
My fatigue got so severe, it was like — I don’t even know how to describe it in a way that someone who doesn’t have a chronic illness can understand — doing a 5K. You’re running and you’re running and you’re running. It feels like your body is constantly going, going, going, going, going. And there’s no relief. There’s no time period when you can recover from it. I could sleep for 12 hours and wake up and still be excruciatingly exhausted.
I remember not being able to get out of bed and get to class. And I didn’t understand why I wasn’t getting up for classes. I was like, “Tiffany, you have to stop being so lazy. Like, girl, get up. You have Italian at 8:30 in the morning, so you need to get to class. We have an exam today. Like, let’s go.” And I just didn’t understand why my body just couldn’t do it.
At that point you still hadn’t gotten a diagnosis. So when did you come to realize something was really wrong — it wasn’t just “laziness”?
You know when you wake up in the morning and you lift your body up to get out of bed? I couldn’t do it. I would try to move an arm, move a leg, and I just had terrible pain. It was so painful that I would just cry. I had to call my mother because I was on the third floor of the house, and she was on the second floor of the house. And she had to come upstairs and help me get to the bathroom. That was literally my life for like two months.
It was very difficult to adjust to that because me being the eldest of six children on my mom’s side, I was always mom No. 2, taking care of my family. And so for the roles to be reversed, and now I’m the one who has to be taken care of, it was a weird shift. It was at that point that my mother was like, OK, we need to get you on health insurance immediately so that we can figure out what’s going on.
Was that when you decided to drop out of college?
Yeah, it was, when I could barely move. I was in school full-time, I was working full-time in Starbucks, and I was also tutoring grade-school kids in my free time. Everything came to a halt.
Once you finally got diagnosed, what did the treatment plan look like?
I had so much trouble with mobility, the only thing that was going to really try and halt that process was high-dose steroids. And of course, at the time, I didn’t know anything about the side effects of steroids. I felt like my emotions were all over the place.
I’ve changed doctors over the years. I feel like I’m on rheumatologist No. 7. Some have retired or moved on to different practices. I fired a few, because I felt like they weren’t letting me be a partner in my own care. I want to be able to make decisions about my health care with my health care provider, and if they’re not open to my input then that’s not a doctor that’s going to work for me.
Now, I’m on mycophenolate, which is just the off-brand name for CellCept, and hydroxychloroquine, also known as Plaquenil.
What’s the origin story of LupusChat, and what has it brought into your life?
My shift into being a patient advocate, especially surrounding lupus, happened fairly quickly. I have a huge family, so they didn’t really understand, where did Tiffany go? She’s not coming to family gatherings. My friends are like, she’s not coming to birthday parties. What’s going on? But once I was diagnosed, I let everyone know: hey, I’ve been diagnosed with lupus and this is what it is, and this is what I’m going through. I was talking about my experience online, and that’s where I really started to find community. At the time of my diagnosis, I didn’t know anyone else with lupus. Social media was my connection to someone else who also had the same condition that I had.
I wanted there to be a space where lupus patients and their caregivers or family can come to find community, and also have credible health information. We’ve talked about lupus and how that affects relationships, how lupus can affect the kidneys, lupus and pregnancy. There are a lot of people who don’t necessarily have a local lupus organization that they can go to for information or community or support. And Lupus Chat sort of fills that void for them. So I’m really proud of the work that I’ve done with my three other co-hosts.
“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.
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