Formerly Hesitant to Question Doctors, She Now Speaks Up for Others
Until she was 19, Dina Thachet was “100% healthy,” hardly ever going to the doctor.
In February of 1992, she began experiencing pain in her
fingers. Doctors continually asked her if her fingers were turning blue or white—but as an Indian woman, Dina never experienced changes in color to her darker skin.
“I was getting a lot of ‘Well, it’s February in Chicago, so just wear an extra pair of gloves,’” she says.
The doctors missed the diagnosis of Raynaud’s disease, a condition that limits blood flow to certain areas of the body and often causes numbness or cold, just as they would continue to miss other signs and symptoms as Dina’s health began to spiral. Anemia and lower back pain were brushed off as indicators of an active college life, with campus providers suggesting Dina was trying to get out of class. She withdrew from college, re-enrolled, and withdrew again as her symptoms worsened.
Her parents believed her, but providers did not, with some recommending her for a psych consult. “I did certainly, at some points, start to believe, ‘Maybe I am making things up, or what if I am crazy?’” Dina recalls. “I had a very warped sense of what normal felt like, because I had been living with pain for so long.”
WITH EACH DIAGNOSIS, MORE QUESTIONS
Dina eventually received a diagnosis of endometriosis, had emergency surgery, and was given a birth control pill to help regulate her menstrual cycle. The day she took her first pill, she landed in the emergency room with meningitis and an E. coli intestinal infection—a succession of events that baffled doctors at first.
“The pain of meningitis is like nothing I could ever describe,” she says. “I felt like my head was about to explode, like the pain was because my brain was pushing against my skull. But the doctors didn’t believe me.”
She was told to stop hyperventilating, to stop looking for attention.
It was a nurse who identified the meningitis. “She had to step in and interrupt, and the doctor was one of those guys, so he gave her an earful,” Dina recalls. Once the nurse had the doctor’s attention, Dina was rushed into a treatment room for a spinal tap as the doctor swore, the situation’s urgency now clear.
“I was not one to question doctors,” she says. “My family also [wasn’t]. Culturally, as Asians, we are just kind of like, ‘Okay, that’s what the doctor said!’”
She doubted her own intuition: “They’re telling me that the labs aren’t showing anything, and they’re the experts. They’re telling me I should feel better, then I just have to believe them. It is very isolating.”
She began inpatient treatment for the meningitis and E. coli and was discharged after 12 days. Within a half hour, she was back at the hospital, her pain “excruciating.”
AN ANSWER, THEN CHAOS
Finally, she saw a rheumatologist.
“This rheumatologist sat with us for about two, two-and-a-half hours and said, ‘Tell me everything—even if you had a hangnail, I don’t care,’” Dina recalls.
As Dina and her mother walked through her medical history, the doctor seemed puzzled until they mentioned her starting birth control.
“He almost fell out of his chair,” she says. “He’s like, ‘You have something called lupus.’” The shift in hormones had triggered a lupus flare, inhibiting her immune system and leading to the meningitis and E. coli infections.
“It was absolutely a relief to know I’m not crazy, I didn’t make any of this up,” Dina says. “But I was also equally terrified, because my best friend had [lupus] and I knew what she had been through and experienced.”
Lupus causes the immune system to attack the body’s tissues and organs. Dina was amidst a bad flare that landed her in the ICU.
“I was in pain from head to toe,” she shares. “I had rashes all over my body. I couldn’t breathe. I was pronounced dead three different times over the course of the five weeks I was in the hospital.”
A “megadose” of steroids reduced inflammation everywhere but her kidneys, and a biopsy found her kidney function had dropped below 10%. Her kidney biopsy caused a blood clot. “It was a very chaotic and awful five weeks,” she explains. “My parents have never fully recovered from the PTSD of it.”
She ended up on chemotherapy to help her kidneys.
“Just like steroids and all the drugs that we’re on—especially the ones not FDA-approved for lupus—they’re double-edged swords,” she shares. “They’re life-saving; they are life-giving. We are glad that we have those options. But on the flip side, we have a lot of side effects as a result of those treatments. But at the time, that is what saved my kidneys. It is what saved my life.”
But the chemotherapy also caused fertility challenges, and Dina and her husband, Nittin, tried for 13 years to get pregnant. Initially, Dina’s doctor wouldn’t discuss it, asking her why she wanted to throw out her hard-won health for a risky pregnancy.
Dina fired him. “I said, ‘Thank you, but you’re not looking at me as a young woman. You’re only looking at me as a lupus patient, and I’m a million other things besides that.’”
She found a supportive rheumatologist who offered a nuanced discussion about the risks and options.
Dina and her husband now have a 3-year-old daughter who loves to dance and play.
A VOICE FOR HERSELF—AND OTHERS
Following her diagnosis, Dina struggled: “‘Why me, and what did I do to deserve this?’ And then it was like, pardon my French, but F this. There’s a life out there for me, and I need to get back to it.”
While undergoing chemo, Dina re-enrolled in school closer to home and went on to finish her degree. She trained to facilitate a support group, applied for lupus research studies (always denied when she mentioned her ethnicity), and got involved with advocacy through what is now the Lupus Research Alliance (LRA).
“I was not happy with the fact I was on these treatments that were not FDA-approved for lupus,” she says. “Lupus has been around for such a long time, and they still don’t have treatments that are just for us.”
Then Dina, who lives in Bolingbrook, Illinois, was invited to advocate on Capitol Hill. “I was hooked. This is where I’m supposed to use my voice,” she shares. “This is where I can make a difference, not just for myself, but for other people along the entire spectrum of lupus, autoimmune disease, pain issues. We deserve to have a voice. We deserve to share our perspective and our desires and needs with the people that get to make the decisions about what funding there is, where it goes, how it’s spent.”
Through her work with the LRA, she met Kathleen Arntsen, president and CEO of the Lupus and Allied Diseases Association (LADA). Dina became a patient advocate for LADA. Her testimony was included in an Institute for Clinical and Economic Review (ICER) report for two new lupus medications. ICER is a nonprofit organization that analyzes the cost-effectiveness of treatments and can influence what treatments and medications insurance companies choose to cover.
Now 48, Dina has lived with lupus for 28 years. The road has been bumpy—for instance, she recalls one doctor who said “you people” in reference to Indian women. But she continues to advocate for herself and others.
“[Advocacy] really kind of fell in my lap to some degree, but became the driving force,” she says. “I can represent others who don’t have a voice or aren’t able to get out of bed or work. … My experience and my survival is not in vain, because I survived all of this for a reason. That is so much bigger than I am.”