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The diagnosis of lupus came after years of pain. Now, LupusChat

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The diagnosis of lupus came after years of pain.  Now, LupusChat

Tteenagers don’t get arthritis. That’s what Tiffany Peterson kept hearing when that awful feeling in her 17-year-old wrists and knees became unbearable. So she tried to ignore it, taking over-the-counter pain medication and keeping her head in science textbooks, while her evenings were full of extracurricular activities and a half-dozen younger siblings to care for. Then came the hair loss and a menstrual cycle that went haywire: bleeding for three months straight.

This was not normal. But without health insurance, and at a time when online health information wasn’t easy to find (Google had only been around for four years), Peterson spent years wondering what was going on. It took a breaking point in college for her to muster the resources to get care and a diagnosis: lupus, a disease she knew little about, and that no one had to deal with.

In the year and a half since, she has grown into a patient advocate with a significant online community at her fingertips. In 2012, Peterson, along with three other women, started a biweekly virtual conversation called LupusChat. Patients, caregivers and doctors from around the world tuned in to ask and answer questions in real time about their shared condition and what their lives could look like.

Peterson, 38, has also worked as a consultant or advisor for several pharmaceutical companies involved in lupus treatments, including Aurinia Pharmaceuticals.

STAT spoke with her about the early, undiagnosed days, what treatments worked for her and the value of a social media community in dealing with the unknown. This conversation has been edited for clarity and brevity.

You had a whole life going on besides what you were experiencing in your body. What were you like in high school? What were your interests and how did undiagnosed lupus play a role?

I went to the High School for Environmental Studies in Manhattan. I was obsessed with science and my childhood dream was to become a marine biologist. I was in all the nerdy after-school clubs: I was in a recycling club and I think I was in a book club too.

I constantly complained to my friends and family about my joint pain. So it was something they were used to hearing. The only thing we can relate it to is arthritis.

And no one in your family had lupus, as far as you knew?

No one in my family was diagnosed with lupus. And I am the eldest of eight children (six on my mother’s side, two on my father’s side). And my mother comes from a very large family: she is one of fifteen children. And no one in our entire family has lupus. So it was really confusing. However, there are many autoimmune diseases in my family. There are people who have a thyroid condition.

How did you try to manage your joint pain yourself?

I just took the over-the-counter Aleve. And it helped enormously. I would just take it, I don’t know, I think every other day, every day, just to manage the pain. About the time I went to college, my sister said, “You always throw this Aleve like candy.” I don’t think it’s healthy for you to go through that all the time.” She was like, you know, on the back of those labels there are warnings.

And so I stopped taking it and I feel like that’s one of the reasons why my symptoms started getting worse. But also around that time there was a death in my family. I lost my paternal grandmother. That was a very emotional period in my life. I was very close to her. And I think the trauma of that also contributed to the progression of my symptoms. It also happened in winter, so that doesn’t help because winter makes lupus worse a lot.

What did you end up studying at university?

The first college I went to was the University of Tampa, in Florida. And I studied marine science and biology. It was my dream school. It was the first time I was really far away from my family. It was very difficult because I was on my own and I knew nothing about what student life was like, or what to do. I ran into some complications with getting my books on time, which really messed up my entire semester. My mother didn’t have the financial support to help me get through it, so I was only there for a semester. And then I finally moved back to New York and went to Lehman College. I think I lasted two semesters, after which my symptoms gradually got worse.

What new symptoms started to emerge?

My fatigue became so intense that it was like – I don’t even know how to describe it in a way that someone who doesn’t have a chronic illness could understand – I was doing a 5k. You run and you run and you run. It feels like your body is constantly going, going, going, going, going. And there is no lighting. There is no period in which you can recover from it. I could sleep for twelve hours and wake up and still be excruciatingly exhausted.

I remember not being able to get out of bed to go to class. And I didn’t understand why I didn’t get up for class. I was like, ‘Tiffany, you need to stop being so lazy. So, girl, get up. You have Italian at 8:30 in the morning, so you have to go to class. We have an exam today. Let’s go.” And I just didn’t understand why my body just couldn’t do it.

At that point you still hadn’t been diagnosed. So when did you realize that something was really wrong – it wasn’t just “laziness”?

You know when you wake up in the morning and lift your body to get out of bed? I could not do it. I tried to move an arm, a leg, but I was in terrible pain. It was so painful that it just made me 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 up and help me go to the bathroom. That was literally my life for two months.

It was very difficult to adjust to that because, as the eldest of six children on my mother’s side, I was always mother number 2 and took care of my family. And so the tables were turned, and now I’m the one who needs to be taken care of, a strange shift. That’s when my mom said, “Okay, we need to get you health insurance right away so we can figure out what’s going on.”

Was that the moment you decided to quit studying?

Yes, that’s what it was, when I could barely move. I was in school full time, I worked full time at Starbucks, and in my spare time I also tutored elementary school children. Everything came to a standstill.

What was the treatment plan like when you were finally diagnosed?

I was having so much trouble with mobility, the only thing that would really try to stop that process was high doses of steroids. And of course, I didn’t know anything about the side effects of steroids at the time. I felt like my emotions were going all over the place.

I have changed doctors over the years. I feel like I’m at rheumatologist number 7. Some have retired or moved on to another practice. I’ve 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 healthcare together with my healthcare provider, and if they aren’t open to my input, then that’s not a doctor who’s going to work for me.

Now I take mycophenolate, which is just the brand name for CellCept, and hydroxychloroquine, also known as Plaquenil.

What is the origin story of LupusChat and what has it brought to your life?

My transition to becoming a patient advocate, especially around lupus, happened quite quickly. I have a huge family, so they didn’t really understand: Where did Tiffany go? She doesn’t come to family gatherings. My friends say, she doesn’t come to birthday parties. What is happening? But once I got 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 talked about my experiences online, and that’s where I really started to find community. When I was diagnosed, I didn’t know anyone else with lupus. Social media was my connection to someone else who also had the same condition as me.

I wanted there to be a space where lupus patients and their caregivers or family can come and find community and also have credible health information. We talked about lupus and how it affects relationships, how lupus can affect the kidneys, lupus and pregnancy. There are many people who don’t necessarily have a local lupus organization that they can turn to for information, community, or support. And Lupus Chat fills that void for them. So I’m very proud of the work that I did together with my three other co-hosts.

“Live with” explores the contours of life with a chronic illness, from the prelude to diagnosis to new life patterns, to wrestling with big questions about illness and health.

STAT’s coverage of chronic health conditions is supported by a grant from Bloomberg Philanthropies. Us financial supporters are not involved in decisions about our journalism.