Jaime Sanders has had migraine headaches since elementary school and daily attacks for more than a decade. But the 46-year-old from Fredericksburg, VA, rarely looks sick. At least that's what people—including physicians she's turned to for relief—have told her. She's often asked if she's absolutely certain her pain is real, or told to see a neurologist. Others tell her to try an over-the-counter remedy or think about having formal testing done.
“I get dismissed a lot, talked down to. I have to prove my pain all the time,” says Sanders, who has done all of the above and more in an ongoing effort to keep her attacks in check. “I sometimes wish I could look how I feel, like a person in severe pain, with a broken limb or a physical cut that needs immediate attention, but unless I'm retching or curled up in a ball in a dark, quiet room, I look like I'm okay.”
The symptoms of neurologic disorders like migraine are often invisible, and other people aren't always sympathetic. If a person cancels dinner plans, her friends may think she's not in the mood to see them rather than that she's dealing with fatigue caused by her multiple sclerosis (MS). Strangers may think the man in the business suit who is taking forever to place a coffee order is deliberately slow, not hampered by brain fog from a traumatic brain injury (TBI).
“I tell patients all the time, ‘Be prepared to be misunderstood,’” says Gregory O’Shanick, MD, medical director at the Center for Neurorehabilitation Services in Richmond, VA, and medical director emeritus of the Brain Injury Association of America. “Be prepared for people to misjudge you, or to think you have no difficulties whatsoever or to minimize [your condition].”
These misunderstandings can occur in public parking lots when someone with no visible symptoms parks in a handicap space, says Alexandra Simpson, MD, a neurologist at the University of Virginia (UVA) Health System in Charlottesville. Some of her patients with multiple sclerosis have experienced this and been confronted by strangers. Dr. Simpson assures her patients that they deserve to have reasonable accommodations made for them.
For many people with MS, fatigue is one of the most overwhelming invisible symptoms. Others include pain, spasticity, and numbness. But doctors more commonly measure disability in MS by whether a person can walk. Someone who needs an assistive device for movement is considered more disabled than someone who has constant fatigue, which is thought of as subjective. “We often don't take invisible symptoms into consideration in calculating disability,” says Dr. Simpson, who adds that calling these symptoms “invisible” is a misnomer. “These symptoms might not be seen by outside observers or doctors in a clinic, but for people living with MS, for example, these types of symptoms can be the ones they struggle with most and are the most disruptive to their quality of life.”
Some people get so used to having their unseen health problems dismissed that “minimal empathy will often make them cry,” says Richard B. Lipton, MD, FAAN, director of the Montefiore Headache Center and professor of neurology at Albert Einstein College of Medicine in New York City. “The lack of understanding is enormous,” he says.
Social insensitivity is a regular part of the lives of people with permanent but invisible disabilities that affect their functioning, according to an opinion piece by Andrew Solomon, PhD, a clinical psychologist, in The New York Times in 2020. Solomon, who has depression and anxiety, says he “neither anticipates nor receives public compassion.”
Sometimes even those closest to a person dealing with invisible symptoms are skeptical of the problem. “Bring them with you to your doctor's appointment,” advises Dr. Simpson. “They may be more receptive in a doctor's office, and I can give my input as well.”
Ignorance Can Hurt
Stacia Bissell, who sustained a TBI in a 2011 bicycle accident, doesn't try to convince doubters about the legitimacy of her condition. “I learned early on not to try to educate people about brain injury 101 or my particular symptoms,” says Bissell, 59, of Pittsfield, MA. “They didn't really want to know, and it's a hard thing to understand.”
As a result of the accident, Bissell had a fractured arm and “a broken brain.” Her arm healed, but her brain continues to struggle. She's prone to headaches and is sensitive to flashing lights and loud noises. She can't multitask and has unpredictably high levels of anxiety, confusion, and fatigue.
Not long after the accident, Bissell was studying a wine menu when she realized, “I couldn't read it. Everything was floating.” A dining companion leaned toward her, pointed at the menu, and said, “This says reeeeeeeed. This says whiiiiite,” drawing out the words as if she were a child or a non-native speaker. “It made me feel small,” recalls Bissell, who at the time was newly injured and didn't respond. “Now I think I would say something like, ‘Hey, did you mean for that to hurt?’”
Thirteen years later, some people close to her still make hurtful comments, perhaps unaware that the Centers for Medicare and Medicaid Services recognized TBI as a chronic health condition in July 2024. “They sometimes say, ‘Oh, you're talking about that again? But you look fine!’ Message received. I should be over this by now. They want and need me to be fine for their lives to feel familiar and comfortable again,” says Bissell. “I try to give people some grace and remember that their lives changed, too, when my accident occurred.”
Constantly being questioned and dismissed is draining. Bissell was a teacher and school administrator for more than 20 years before her accident. Two years after her injury, she was forced out by an administrator who did not provide work accommodations that had been previously agreed to.
When Bissell wanted to apply for early disability retirement, she and her lawyer had to travel across the state to Boston and sit down with three doctors, who questioned her for three hours before unanimously awarding her early retirement. “They grilled me to determine if I was a malingerer or truly permanently injured,” says Bissell, who wrote about her experience in the 2024 anthology Deserts to Mountaintops: Choosing Our Healing Through Radical Self-Acceptance.
Fighting for Recognition
Kelly Lang has had to fight for resources for herself and her daughter for more than two decades. In November 2001, she was driving with her daughters, who were 3 and 5, when her car was hit by an SUV just blocks from her home in Leesburg, VA. Lang, who is now in her fifties, has no memory of the accident, which pushed her car 60 feet down the road and into a guardrail. She was badly hurt, but the extent of her injuries wasn't known immediately. “They released me from the emergency department saying, ‘You might have a headache. You might be sore tomorrow,’” she recalls.
Instead, the focus was on Olivia, her younger daughter, who had sustained a TBI and whose survival wasn't guaranteed. The 3-year-old spent two weeks in the hospital before being moved to an inpatient children's rehabilitation center. “She had to learn how to walk, talk, eat, play, everything all over again,” says Lang, who, with her husband, Michael, told their family's story in the 2022 book The Miracle Child: Traumatic Brain Injury and Me
A few months after the collision, Lang noticed that she too was struggling. She couldn't comprehend words on a page or manage the household finances. She was always tired and slept so heavily it was difficult to wake her. Multitasking—making dinner while talking on the phone, for example—was impossible. Tests confirmed that Lang too had residual symptoms from a TBI.
She cried when she got the news, but she later saw it as a gift. It gave her insight into her daughter's struggles. When school administrators weren't fulfilling Olivia's needs as laid out in her education plan, Lang was there to fight for her. “I used to joke that when they saw me coming, they'd run, because they knew there was something that wasn't working,” Lang says.
Olivia, now 26, has ongoing cognitive difficulties, anxiety, depression, and obsessive-compulsive disorder—none of which are visible.
When Olivia was initially denied Social Security benefits, the Langs hired an advocate to represent her on appeal. The man said that he could prep Olivia via phone, but Lang insisted he meet her daughter in person. He agreed, saying he could stay for only 30 minutes. The meeting lasted two hours. “The more time he spent with her, the more he could see her deficits. At first you might not notice, but the more you talk to Olivia, the more you realize something's going on,” Lang says. “The advocate said he'd never had a case like that before.”
Still, there are times when even the best-laid plans do not produce the desired result. A few summers ago, Sanders’ headaches were so intense she sought relief at an urgent care center. She offered staffers a binder of information that she and her doctor had prepared, detailing her history and listing suggested courses of treatment.
Sanders saw the same physician during each visit. At the third one, the doctor treated her coldly, referring to Sanders not by name but as “the Binder.” “It was like, ‘Oh, the Binder's here.’ ‘Here comes the Binder.’ As if I weren't a human being,” Sanders says. “That was not very comforting. I don't even want to be here because I'm afraid of the stigma, and she's asking me if I was doing everything I could not to end up in urgent care. If I had a condition that was seen as more valid, would she even have asked me that?”
Sanders, Lang, and Bissell say they've found purpose and comfort by helping others in similar situations.
In 2011, Sanders started a blog called “The Migraine Diva” as “a way to build community. I didn't see anybody out there who looked like me.” She wrote about her life and experiences, and people, including other bloggers, doctors, and drug company representatives, noticed. She's since expanded her social media reach to include Facebook and Instagram, becoming an in-demand speaker and advocate for health care change, even lobbying in Washington, D.C.
“When you live with an invisible illness, you feel like you're in the shadows all the time,” Sanders says. “My activism is giving my pain a purpose.”
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