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Lernen, mit chronischer Migräne zu leben

von NFI Redaktion

During the summer of 2005, Qasim Amin Nathari delivered the Jumuah (Friday prayers in the Muslim religion) sermon to about 200 members of a community in New Jersey. He was not nervous because he knew the people and they knew him. They were part of the same religious community. Nathari was an experienced speaker who had been working in communication for decades. He had delivered this kind of sermon many times before – not only in this mosque but also in others.

However, as Nathari began his traditional introduction – repeating religious scriptures that he had memorized and recited hundreds of times before – he found himself stuck in a strange loop. His brain seemed to keep going back to the beginning of a passage and starting over.

The congregation started to murmur. Something seemed off. Was everything okay? With the help of a friend in the audience, it took Nathari a minute to gather himself. In those few moments, he realized what had happened.

“I need to explain what’s going on here”

Earlier in the day, he had taken his regular dose of a new migraine medication. Nathari suffers from chronic, severe migraines. „Chronic“ means he has headaches on at least 15 days a month, and „severe“ means the pain is intense even in comparison to migraines.

This seizure medication was the latest in a series of medications prescribed by various doctors to treat his condition. Many people spoke highly of the medication for reducing the number of migraine episodes, but it was also known to affect brain function.

Nathari realized that this may have been the reason for his memory loss in front of so many people. After gathering his thoughts, he knew exactly what to do.

“Okay,” he told the congregation. „I need to explain to you what’s going on here.“ Many in his community already knew about Nathari’s condition, but he generally did not speak about it in such a public forum.

He held nothing back. He told them about the debilitating pain caused by migraines, the array of medications he had taken, and the side effects, including the new medication that Friday evening.

Developing a Backup Plan

It was an approach he had learned years earlier. At that time, the migraines that Nathari had experienced as a child began to dominate his life.

One summer night in 2003, Nathari endured a painful and terrifying night with a „hemiplegic“ migraine that can mimic the symptoms of a stroke. The numbness and pain started in his foot and spread to the left side of his body.

The only reason he didn’t go to the emergency room immediately (he went the next morning) was because he didn’t want to leave his children at home alone. But Nathari didn’t want to take any risks next time. So, he spoke to his son, who was in middle school at the time. They discussed how his illness could impact their lives and together developed an emergency plan for the next crisis.

“Instead of being frightened and confused about why his father was in the emergency room, he felt informed and empowered to help me – and the rest of the family – cope with the consequences of this illness,” says Nathari.

This gave Nathari the confidence to adopt the same approach with his circle of friends and family, and eventually with the congregation of his mosque.

Being open about his condition led to understanding and compassion from so many important people in his life. Why should his religious community be any different?

He was right. The congregation welcomed and supported him for speaking up. For months after his speech, people approached Nathari about that moment in the mosque. They told him how much they admired his honesty and courage in speaking about his condition. To this day, people tell him about their own migraine experiences and those of family members, and even seek his advice.

Nathari wants to educate people about what they can do to manage migraine in their lives, especially in communities not typically associated with the disease. He likes to tell people, “Even black men get migraines!” But, he says, the same applies to other minority communities.

He comes back to a fundamental principle for coping with the impact of migraine on yourself and your loved ones: communication.

“You have to talk to people. Migraine is an invisible illness,” he says. “If you don’t tell people about it, they can’t know what you’re going through.”

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