Like so many people who live with chronic pain, 27-year-old Sandy Do of San Francisco inhabits a complicated situation that requires careful navigation every day.
Sandy lives with a wide variety of chronic pain disorders, starting with a rare eye pain condition called corneal neuralgia/trigeminal ganglionitis. She has severe headaches and migraines, along with bone and joint pain of unknown origin. Her chronic complicated pelvic pain is comprised of four different conditions: interstitial cystitis, vulvodynia, pudendal neuralgia, and myofascial pelvic floor pain—each with complex symptoms. She has Raynaud’s phenomenon, which causes pain in her hands and feet, and postural orthostatic tachycardia syndrome (POTS), which causes her heart rate to change dramatically when she stands up or shifts her position (aggravating her pain). Most recently, she has been diagnosed with central pain syndrome and complex regional pain syndrome.
Simply put, she hurts everywhere. “I’m to the point where doctors just refer to me as someone with a multi-system disorder,” says Sandy, with a bit of a laugh in her voice.
Throughout childhood, Sandy experienced mild eye pain, headaches and pelvic pain, but nothing that limited her activities. That changed in October 2007, when she awoke one morning to excruciating eye pain. The smells of foods cooking, the sensation of air blowing into her eyes on even the mildest of days, the ambient temperature change from opening her refrigerator—all caused intense pain.
She endured the eye pain—while attempting to find a solution—and continued her work at a research laboratory for a year before she decided to quit. She felt she couldn’t explain the situation to her supervisor, a doctor she liked but “who, like many people, had difficulty understanding the validity of invisible chronic pain without a diagnosis or positive test results,” she says.
Sandy spent the next six months gathering strength, then decided to return to school part-time. (She has a bachelor’s degree in molecular biology.) She took one class per semester, barely making it through, and yet through the pain she still applied to graduate school. “I think I was going a little crazy, and in denial, too,” she says. An excellent student all her life, Sandy was accepted everywhere she applied, and made plans to attend Columbia University in New York.
But first, she scheduled a three-week trip to the Boston Foundation for Sight, where doctors were fitting patients with prosthetic lenses. “I was hoping the prosthetic would cover my eyes and help. It didn’t, but it did bring me to a place where a doctor was studying what I have,” she says. A visiting Italian professor who invented a novel pain therapy apparatus that uses electrical stimulation to reduce pain tried some treatments, and doctors on staff attempted other novel therapies, but nothing worked. “They said, ‘I’m so sorry, we don’t quite know what to do,’” remembers Sandy. She went home deeply frustrated, and made the decision to postpone her grad school dreams.
In the early years of her pain experience, Sandy saw a variety of specialists throughout San Francisco and the Bay Area, chasing her symptoms and juggling health care providers. “A lot of doctors don’t want to deal with me because it’s more complicated,” she says. “And up until this year my care was very fragmented. I was sent to all these specialists who would focus on one thing and ignore everything else.” Physicians also frequently dismissed her, saying she was “just anxious or depressed.”
A lucky break came when a new physical therapist connected her with the health care providers she now sees, who work as a team. (These include a primary care doctor, a pain specialist, a rheumatologist, two physical therapists, and three gynecologists—one generalist, the others specializing in urogynecology and vulvar disorder, respectively.)
Throughout her pain journey, Sandy has had the support of her boyfriend, Carlo. While many relationships feel strain when one partner has chronic pain, Sandy says the experience—especially her trip to the Boston Foundation for Sight—has strengthened their bond. Carlo joined her for the first week of the trip. “He finally got it. It was being in an environment where other people were supportive and empathetic that helped him understand,” she says. Carlo cooks so Sandy can stay out of the kitchen; they watch TV shows with lots of dialogue (because she can’t watch much), and listen to story-telling podcasts.
Their life together is spent mostly at home, and Sandy says this means many of her friendships have dissolved. When she got sick, she stopped attending parties and vacationing with friends. Many people just drifted away—in part because they didn’t understand her new limitations and her inability to get better. “’Chronic’ just didn’t make sense to them,” says Sandy.
Losing friends has been hard, says Sandy, but spending time in online forums, such as healKick.com, where she can connect with others who understand her situation has strengthened her resolve: “I don’t just have a responsibility to myself to keep going. I have a responsibility to those who care about me.”
Although she can’t work full-time, Sandy does work a few hours a week for an online tutoring company, helping students with math and biology. It’s difficult, but she loves it: “Work has always been an important and meaningful part of my life, and this is my way of not completely giving that up, even though it is a poor substitute for a career,” she says. “It makes me feel like a useful, contributing member of society.”
She firmly believes that she will eventually feel better. “I’m definitely hopeful. I think that I will find improvement one day,” says Sandy. “It won’t be tomorrow, it might not be next month or next year, but I’m confident it will happen. I know there are people working to help make things better. I don’t think I’ve exhausted everything,” she says. “As long as I’m alive, I might as well try.”
– By Jenni Prokopy