How to Deal with Invisible Symptoms of Neurologic Disorders

People with invisible disabilities often feel judged or misunderstood. These neurologists and patients offer strategies people can use to counter that and protect their own physical and emotional health.

Speak to your physician. Be specific about how your condition affects your daily life. Many patients focus on the level of pain, not on how it disrupts their functioning, says Richard B. Lipton, MD, FAAN, director of the Montefiore Headache Center and a professor of neurology at Albert Einstein College of Medicine in New York City. If patients say the pain is unbearable, they will receive sympathy, Dr. Lipton says, but if they say they’ve missed work four times in the last month and may be fired if they don’t get the pain under control, it may elicit a more aggressive response.

Join a support group. Talk to others with the same struggles either informally or as part of a support group, suggests Dr. Lipton. Reach out to patient organizations related to your condition. The American Migraine Foundation has a Making Migraine Visible campaign that may help.

Protect your mental health. Cognitive behavioral therapy has helped 46-year-old Jaime Sanders—who has had migraine attacks since elementary school—talk through her feelings while also giving her tips and tools that help her deal with her condition and the public’s reaction to it. “When the world rejects me, I remind myself that these symptoms aren’t things I’ve brought upon myself. I did not cause this.”

Draft an “elevator speech.” “Write down a few words you can say when someone questions your actions,” advises 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. This may result in less anxiety and miscommunication. He suggests something like, “I was injured or diagnosed at such and such a time, and these are my residual problems. These are things you can do to help me [communicate, walk, think] better.”

Let doctors speak for you. Some medical organizations and physicians hand out information cards that sum up their patients’ conditions. Dr. O’Shanick suggests that patients keep his business card handy in case their TBI-related symptoms, like slurred speech or poor balance, are misinterpreted. The card includes the date of the injury and his emergency contact information, he says. “I’ve gotten calls from police officers after they’ve arrested or pulled someone over, asking, ‘Is this legit?’”

Don’t compare. Refrain from measuring yourself and your condition against others, and don’t listen to people who try to do that. For example, studies show that 15 to 40 percent of people who sustain a mild traumatic brain injury have residual symptoms, says Michael Jaffee, MD, FAAN, professor of neurology at the University of Florida in Gainesville. “Not everyone will have the same rate of recovery.”

Educate. “I arm my patients with data about their symptoms. If you look at ratings of pain for migraine compared with, say, osteoarthritis or lower back pain, migraine is higher,” Dr. Lipton says. “I give my patients evidence from the Global Burden of Disease study that shows migraine is one of the world’s most debilitating disorders.” Also, you don’t have to educate the world. “You can try to inform people, but it’s your knowledge, attitudes, and beliefs that you can control,” says Dr. Lipton. “You can’t control the attitudes and beliefs of others.” Patients can decide how much or how little information they are willing to give, agrees Alexandra Simpson, MD, a neurologist at the University of Virginia Health System in Charlottesville.

Set boundaries. Be clear about what you can and cannot do so no one is disappointed. Stacia Bissell, who sustained a traumatic brain injury (TBI) from a 2011 bike accident, says it’s best to be up-front. “I’ve learned to use clear language with people when I can’t do something,” she says. “‘Hey, I’d love to go with you. I’ll take my car in case I have to leave early.’ Or ‘If given a choice, I’d rather go to such and such restaurant since it’s quieter. Does that work for you?’”

Accept help. “When people offer to make or bring meals, let them. When they want to do your grocery shopping or walk your dog, take them up on that,” says Kelly Lang, who sustained a TBI after a car accident in 2001. She suggests making a list of chores and errands that people can do. “At first, I tried to be strong and do it all myself,” says Lang. “I regret that. In a crisis, there’s just too much stuff.”

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