Finding her voice and advocating for others.
Leslie Rott has lived with the symptoms of rheumatoid arthritis/rheumatoid disease (RA/RD) and lupus since she was about 19 years old. Now 32, Leslie is a staunch patient advocate—but it took a while to get her to that confident, assertive place.
The problems started just before Leslie’s senior year of college. A very bad episode of vertigo landed her in the hospital, and subsequent attacks, while milder, were still disabling. Because she had no other symptoms, doctors dismissed her concerns and sent her back to college. (She now knows inner ear disease can be a precursor symptom of lupus.)
During her senior year, she was sick all the time, includingx five episodes of strep throat and three pink eye infections.
“Everyone attributed these infections to the stress of school, and in the absence of other symptoms, they were each treated as discrete events, not as some full-body problem that needed further investigation,” says Leslie.
That summer, she continued to have more symptoms, including severe pain in her shoulder and ribs. “These symptoms were psychologized,” she says. “I was told I was being dramatic about them… and that I probably had carpal tunnel syndrome and was constipated. I listened to everything my doctors told me, even if it didn’t seem quite right. It didn’t occur to me to question or fight back.” She started grad school in the fall of 2013.
“You’re Just Stressed Out”
Much of the challenge in getting a correct diagnosis originated with Leslie’s pediatrician, who she had continued to see through college. “You’re just stressed out” was her diagnosis—which meant she questioned herself all the time. Always a hard-charger, Leslie knew she was prone to intensity, but the symptoms she was experiencing felt different from stress.
“I came out of the womb stressed. I know what that feels like, and this was not it,” she says. Her doctor’s advice to drop out of school was hard to hear, and logistically impossible anyway; her parents didn’t have health insurance, and Leslie’s health insurance was dependent on her staying in school. Without insurance, she would never get answers, and her quality of life would have been further diminished, leading to disability and possibly death.
She began to put her foot down and insist on seeing a specialist. It took months to get an appointment. Once she finally saw a rheumatologist, the doctor asked why no one had flagged all of Leslie’s senior year infections.
“My doctor said, ‘This is not how a normal 22-year-old’s immune system should work’ and I was like ‘Tell me about it!’ I just needed answers, and it was a very confusing waiting game,” she says.
Leslie’s doctors gave her conflicting information. “You have all this stuff going on, it sounds strange to you, and the doctors are saying it could be nothing… or you could be dying,” she explains. “When you have that spectrum of possibility, it’s really hard to talk about the situation with other people in your life, because they don’t have a way to explain it either.” The stress of the diagnosis process caused Leslie to start having severe anxiety symptoms, for which she had to seek treatment—and which she says were almost as debilitating as the pain.
“No one tells you that anxiety can come along with serious illness diagnosis,” Leslie says. “And for those of us who start out the process with our symptoms being psychologized—being told we’re just stressed, or it’s all in our heads—it feels self-defeating to then end up in a chair in a psychologist’s office, because that’s exactly what you were trying to avoid.”
Admitting that you’re having mental health problems on top of physical issues can be difficult, and treating multiple issues at once is complex. But it’s essential to take a mental health issue like anxiety seriously, she says: “For a long time after my diagnosis, when I would get scared, things would snowball out of control. I learned the hard way that I couldn’t afford to flare at every emotional upheaval.”
Blogging Builds Connections
Soon after her diagnoses, Leslie launched a blog called Getting Closer to Myself, in which she chronicled her experience. It was an opportunity to connect with a broader community of people experiencing the same illnesses, and to check her head.
“My first rheumatologist fired off questions left and right, asking why I hadn’t questioned my doctors’ decisions in the past, but then he didn’t want me to question anything he was telling me,” says Leslie. “The blog was a place to process that, get some answers, and gain some confidence about my ability to question my treatment. If I hadn’t started blogging, my journey would have been so different.”
Fellow bloggers and community members encouraged Leslie to push for better care.
“The medical model we’re stuck with has a real lack of patient questioning, so the blog helped me develop a strong voice,” says Leslie. “It helped improve my relationship with my rheumatologist. I was really clammed up at first, but over time my empowerment helped me prove to him I could handle the situation.”
Another driving force behind Leslie’s blog was that she felt totally alone, like she was the only one going through this. “Grad school was not a great environment,” she says. “There was very little support. So a big part of the blog was capturing what it was like to be chronically ill in higher education. It seemed like no one was talking about it, and I learned I wasn’t the only one going through it.”
Leslie went on to finish graduate school and even pursue a third degree.
“Ultimately, I did change career paths, not as much because I was unable to do something, but more because it made me realize what I really wanted to do,” she says. She has a Ph.D. in sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College.
“I have become a personal and professional patient advocate. In that way, I have taken a profoundly negative situation in my life and turned it into something positive. I realized I could opt to embrace the pain and channel it into something good, or I could let it control me and overtake me, and then I would be a shell of my former self. I chose the former.”
Finding the Right Fit Is Not Easy
Leslie’s combination of illnesses makes them even more difficult to treat. She tried a biologic, but it caused a massive lupus flare, which took most biologics off the table for her. She gets some relief from steroids, but hates the side effects, which include weight gain and mania, so she uses them as infrequently as possible.
Through trial and error, her doctor developed a unique combination of Quinacrine, an antimalarial, and Imuran, a disease-modifying anti-rheumatic drug (DMARD). The Quinacrine causes some challenges because it’s not FDA-approved for treating RA/RD; she must obtain it from a U.S.-based compounding pharmacy, and it does not show up in most electronic medical records (EMR) systems—so when she sees a new doctor and they try to put it in their system, it raises a lot of questions.
“I’ve watched friends with RA cycle through every medication and think, ‘At least they get to try everything,’ whereas for me, a whole class of drugs is off the table. So it’s nice to have finally found a combination treatment that keeps my illnesses relatively stable,” she says. She also takes a muscle relaxant for help sleeping, takes naps when she can, and eats a healthy vegetarian diet, among other complementary approaches.
Settling Into Confidence and Clarity
Leslie says that after years of challenges, it’s a relief to feel more confident and even-keeled when it comes to all her health issues, including the anxiety that developed during her diagnosis journey. It took a while for her to find a comprehensive approach that helped. The support of her family and friends has meant a great deal to her.
“Four years ago, I was home in Michigan on break from school, and our family was supposed to go to a baseball game together. I woke up feeling unwell, and my dad—who was still alive at the time—said ‘Go or don’t go, either way is fine.’ That was so liberating because it felt like finally, somebody gets it!” she recalls.
In so few words, he said the very thing she needed to hear. She understood that it was not that he didn’t care—in fact, he cared a great deal about her well-being—but that he simply wanted her to have confidence in making decisions to take good care of herself, and she wouldn’t be letting anyone down if she didn’t attend. With so many people questioning her over a period of years, the understanding of her father and other people close to her helped keep her strong.
When Leslie’s father passed away unexpectedly, she kept expecting her body to flare up in response, as it had in the early years of her illnesses. But she says her emotional state was so much calmer than before that her body also stayed calm. “Clearly my illnesses are better managed, and I’m coping in a better way, because this hugely significant thing didn’t cause a flare,” she says. “For me that was a big signal that things were different because before, the littlest thing would send me into a tailspin.”
Today, Leslie comes from that place of calm strength to advocate for other patients. She tells people with RA/RD to find others like them so they’re not alone, even if those confidantes are online and not in person. “My body is constantly at odds with itself and that is profoundly exhausting,” she explains. “When you learn there are people like you, it’s less scary… and enormously helpful.”