For the past 28 years, Mónica Patricia Molina has had seizures—many of them in public places. Now, at age 42, she’s afraid to leave her house.

“Having a seizure in public is one of the most awful things that has happened to me,” she said. “People don't know what to do. They scream, they run away, or they watch and pity me.”

After a public seizure, Molina might wake up in a hospital, disoriented and in pain. She says that hospital personnel tell her, “It’s just a seizure; you know how to handle it.” Or she might wake up surrounded by strangers. Some of them are now afraid of her. Mónica isn’t alone—studies estimate that between 3% and 7% of people with epilepsy have social anxiety disorder. Overall, about 23% of people with epilepsy have some form of anxiety; this is more than twice the rate of the general population.

Regardless of who experiences social anxiety, the disorder can have multiple, dramatic consequences, including isolation, a loss of self-respect, and an impaired lifestyle, said W. Curt LaFrance, Jr., director of neuropsychiatry and behavioral neurology at Rhode Island Hospital and professor of psychiatry and neurology at Brown University.

Although only a few studies exist, recent research suggests that social anxiety in people with epilepsy may be more common than previously thought—and that the very nature of the condition may hamper its diagnosis and treatment. Manuela Ochoa-Urrea, a neurology resident at the Central Military Hospital, Bogota, Colombia, initiated a study of 70 adults with epilepsy receiving care at the hospital. She presented her results at the 10th Latin American Congress on Epileptology, held in Costa Rica.

The patients ranged in age from 18 to 74; about half were male. Using standard screening tools, Ochoa-Urrea found that 38% had agoraphobia and 29% had social anxiety disorder. Also, 53% met criteria for depression. (Many patients screened positive for multiple conditions.)

However, said Ochoa-Urrea, depression didn’t seem to affect the patients’ lives as much as social anxiety or agoraphobia. “When we looked at the quality of life of these patients, it was significantly lower if they had [agoraphobia or social anxiety], even when controlling for depression,” she said.

People who still had seizures were more likely than those who were seizure free to have agoraphobia. Social anxiety disorder was more common in people taking multiple antiepileptic drugs (AEDs). Ochoa-Urrea noted that taking multiple AEDs can be a marker for poor seizure control. “Social anxiety is different from other anxiety disorders,” she said. “It has a lot to do with seizure control and with the outside environment—the way society sees epilepsy.” Patients who have social anxiety also tend to have a low internal health locus of control. “They don’t feel they are empowered to take care of their condition," said Ochoa-Urrea.

Molina avoids going out because she does not want people to see her having a seizure. She has had several negative experiences in public places. At an occupational therapy appointment, she had a seizure witnessed by several people. “I felt ashamed because when I woke up, I had no shirt on and everyone was staring at me,” she said.

When Molina does go out, she brings a family member. But even with her family, she does not feel at peace. “Even after all these years, my parents haven't gotten used to the seizures,” she said. “My father cannot be alone with me because he fears I will have one. And I have small nephews who get scared and start crying, and they tell me they feel afraid because they think I'm dying.”

Molina’s experiences are not unusual. “Patients told me that they felt like a ‘rare bug’ with their family members,” said Ochoa-Urrea. “They felt different because they had epilepsy. They think ‘there’s something wrong with me’ and they feel uncomfortable.”

Effective treatments for social anxiety and agoraphobia haven’t been rigorously studied in people with epilepsy, but in general, treatment includes cognitive behavioral therapy, medication or both, said LaFrance. To receive treatment, however, diagnosis must come first. And most people with social anxiety don’t talk about it with their doctors, said Ochoa-Urrea.

“One of the best things people can do is tell their doctor, ‘I’m scared of going out and doing things in public; I’m not doing things that I should do, socially, because I feel afraid’,” she said. “One of the first steps is accepting that you’re not going out because you’re afraid and then seeking help for that.”

Physicians also need to reach out, she said. “We as health-care providers should be a bit more aware of the subject and maybe ask about it directly. It can affect quality of life.”

Other studies have found that compared to other people with epilepsy, those with social anxiety are more secretive about their epilepsy, possibly because they are concerned about what others would say or think if they “went public” with their condition. A 2015 Canadian study found that patients who knew more about their epilepsy were less likely to have social anxiety. Those with social anxiety also perceived their seizures as being more severe, and were more afraid of what others would think if they witnessed a seizure.

Does the social anxiety stem from a fear of being judged, or is it tied to the general public’s relative ignorance of what to do when they see someone having a seizure? It’s most likely both, said Ochoa-Urrea. “If epilepsy was an issue that people would talk about, say, on television, then maybe patients would feel more comfortable,” she said. “If people knew how to react during a seizure, to help someone, it would be easier for patients to go out.”

Molina agreed. “I would feel safer if people knew more about epilepsy and seizures, and [if] they knew how to react to them,” she said.

Improving public education and understanding is important everywhere, including Colombia, said Ochoa-Urrea. “Here, there’s not a lot of awareness and there’s a lot of myths surrounding the disease. We have a law that epilepsy patients cannot lose their jobs because of their epilepsy, but I don’t know that it’s always applied. There are employers who don’t know anything about epilepsy or how to react to it.”

Molina said she has looked for work, but that employers will not hire her when they learn that she has epilepsy. “I think they are worried that they could get in trouble if I had a seizure at work,” she said.

In the end, said Ochoa-Urrea, “It’s in the patient’s hands to look for help, but it’s in everyone’s hands to know what to do if you come across someone with epilepsy.”

How to help someone who is having a seizure (adapted from the US Centers for Disease Control and Prevention)

DO:

• Ease the person to the floor or ground
• Turn the person gently onto one side. This will help the person breathe
• Clear the area of anything hard or sharp. This can prevent injury
• Put something soft and flat, like a folded jacket, under the person's head
• Remove the person's eyeglasses
• Loosen anything around the neck that may make it hard to breathe.
• Time the seizure. Call an ambulance if the seizure lasts longer than 5 minutes

DO NOT:

• Do not hold the person down or try to stop any movements
• Do not put anything in the person’s mouth. This can injure the teeth or jaw. A person having a seizure cannot swallow his or her tongue
• Do not try to give mouth-to-mouth breaths (like CPR). People usually start breathing again on their own after a seizure
• Do not offer the person water or food until he or she is fully alert