Persevering Through a Struggle on Multiple Fronts
Elisa Friedlander lives with complex regional pain syndrome (CRPS), a rare neurological condition characterized by burning sensations in the limbs. But she feels blessed to have a wife, Shelley Eisenman, who supports her through the pain. Elisa finds additional comfort in support groups, her rescue dog Zakai, and her Jewish faith.
Now 53, Elisa has lived with pain since her early 20s. Her pain gradually worsened from neck stiffness to intense and disruptive pain throughout her spine, and she was diagnosed with early onset degenerative disc disease at 30. Though reluctant to have surgery, Elisa was unable to find effective treatment and underwent spinal surgery at 45. But it wasn’t until after the second surgery—an attempted revision—that Elisa was diagnosed with CRPS. She was 46.
Elisa describes that first year post CRPS diagnosis as “one of the most stressful years of my life. I remember feeling like even though I have a really amazing, supportive mutual partnership in my marriage and then-partnership, I felt utterly alone. I didn’t have a medical team.” It was frightening, and the pain extreme. However, Elisa faced external barriers to treatment as well as the uncertainty that accompanies chronic pain.
A fight for diagnosis and care
Along with the usual dismissiveness that people with chronic pain experience, Elisa says, “Without a doubt, gender came into play.” After she married in 2013, Elisa switched insurance providers and was forced to undergo CRPS diagnosis again, despite previously receiving the CRPS diagnosis from three separate doctors: her primary care, a neurologist specializing in the condition, and the neurosurgeon who performed her revision spinal surgery. This information was in her medical records. “They just wanted to diagnose [my condition] themselves,” she says, and this delayed getting treatment.
Even before this, Elisa had problems with doctors not taking her seriously.
Though the first surgery was unsuccessful, the surgeon who did the procedure was still “condescending, dismissive, and blaming,” Elisa says. The doctors she saw afterwards were largely no better. The specialists she visited— all male—were acquaintances, and Elisa describes a “boy’s club” atmosphere. “Like they’ve got each other’s backs. But they didn’t have my back, so to speak. So it was like before I walked in the door, they had decided that [I was the problem]. ‘Oh, this doctor is a great doctor,’ and ‘I can’t help you.’ Not examining me. Not asking me questions. And that happened time and again. It was crazy-making,” she says. Even when her second surgeon proved to be an exception and was willing to listen to and work with Elisa, the damage created by the first spinal surgery was too great.
Indeed, research has shown that women are less likely to be taken seriously by health care providers. One study found that women may, in fact, experience pain more intensely than men, yet 80 percent of pain studies are performed on men—human and mice. Other studies have shown that health providers order more lab tests for men than for women with similar pain symptoms, and providers have suggested that women’s pain were probably caused by stress or family, not actual diseases.
A constant coming out
While Elisa acknowledges that her whiteness gives her societal privilege, she faces homophobia on top of gender bias as a lesbian woman. It has been nearly 10 years since she could drive, and her pain—especially in the early days— made doctors’ visits extremely difficult. Shelley has supported Elisa through it all, transporting her to appointments and even taking notes during them.
One incident occurred when Shelley accompanied Elisa to an appointment with a new doctor. “When I introduced my wife, he stopped writing, gave us a look of disgust, and wrote in my chart that I came to the appointment with a ‘friend,’” she says. That was far from an isolated episode.
But outright incidents of bias are less common than microaggressions or general assumptions, even when checking in for an appointment. “Every single time they say, ‘Okay, is this your employer, or your spouse’s insurance?’ and I say, ‘My spouse’s.’ And they say, ‘Okay, so where does your husband work?’ Every time. One hundred percent of the time. It’s never not happened,” Elisa says. Although Elisa is proudly out and open about her identity, she knows some people do not have this option as being out can be unsafe. Despite her confidence, Elisa constantly assesses how others will perceive her and react.
The omission—accidental or deliberate—of parts of her identity from care is troubling. Although Elisa, a licensed marriage and family therapist herself, says that support groups and therapy are helpful for people with chronic pain, she sees a lack of support groups specifically for people like her. There are also things about the LGBTQ+ community, or any other marginalized population, that outsiders miss.
While Elisa agrees that there is a larger LGBTQ+ community encompassing anyone identifying as not straight, it is not that simple. “There are different ways in which a gay man is going to experience health care disparities than me, as a lesbian woman. And there are cultures. There is a gay culture. There is a lesbian culture. We have different norms and different values within those specific cultures and subcultures,” she says.
Another particular concern for LGBTQ+ people is elder care and what the attitudes of their caregivers will be if they end up in a nursing home. Furthermore, without resources like support groups dedicated to specific populations like LGBTQ+ people, Elisa says, “Our communities are going to hold back, which limits how much support [they’re able to receive].” So now, through the U.S. Pain Foundation, Elisa is starting a support group for LGBTQ+ people with chronic pain.
A holistic approach
Along with manual physical therapy, Elisa maintains a strict routine to manage her CRPS and other conditions, including heat, adapted yoga, and physical therapy exercises. “People often respond that they admire my commitment to this but, in truth, I literally can’t move without these hours of self-care before I start the day,” she says.
Elisa’s other management strategies, such as keeping a journal, account for her psychological needs. “If I’m thinking something, it’s written down. So I’d say writing. Writing is extremely healing,” she says.
While some may find it easy to dwell on the negative, Elisa considers herself to be a joyful and loving person. She has also made progress on her health journey, and through trial and error has found a medical team. She believes that for people with chronic pain, self-acceptance and realistic expectations are important. But realistic expectations should not end with the self.
If medical professionals want to eliminate bias in the field, the work must begin within. Elisa thinks providers must first be willing to do some introspection about their beliefs and identify the source of their values. If they do not, then, she says, “the decisions that they make about providing care and equitable treatment are going to be driven based on an unconscious process.”
She also has advice for young people and others combatting discrimination: societal bias has two faces—external and internal—and analyzing the second is as vital as fighting the first. No one can “grow up in this society and not internalize the stigma on some level,” Elisa says.
And if someone finds gaps in their support like Elisa has? Even if a resource does not currently exist, that “doesn’t mean it can’t. You might not have the time or energy to take something on, like starting a specific support group or doing some advocacy, but you can offer an idea to organizations,” Elisa says.
Systematic change and personal growth do not happen overnight, but neither is impossible.
—by Maya Coseo