Written by Jaime Sanders and originally published on TheMigraineDiva.com
Generously shared with Chronic Migraine Awareness
I was extremely amazed and humbled by how many people reached out to me after the Good Morning America segment aired that featured my story. To say it was overwhelming would be a gross understatement. The vast majority of comments, emails, messages and tweets I received were from women who felt validated by watching me on their television screens. But, there was one tweet that really stood out to me.
Now, for some people this tweet might not seem that different from all of the other tweets about the GMA segment that morning. For me, however, it was like a unicorn. A black man who watched the show that morning because he has migraine disease. Yes, migraine disproportionately affects women; approximately every three out of four people with migraine are women. However, 6% of men have migraine and since it is seen as a women’s issue and less legitimate, the stigma that men face is often worse.¹
The moment I saw that tweet I had to respond. Not just because this was a man openly proclaiming he has migraine, but this was a black man doing so. In my community, black men are not allowed to show any weakness, pain or inability to function. Due to our history, black people must always appear to be strong and infallible. Any signs of vulnerability can make you a target. Here I saw a man standing in his truth and not being ashamed about it.
Men – The Forgotten Ones
Why is it when we look at media surrounding migraine that all we see are women? Occasionally, there will be a person of color or maybe a gay couple, but for the most part migraine is shown as a middle-aged white woman’s disease. Where are the men? If they don’t see themselves being represented then how can we expect them to share their experiences or feel like they are a part of the community? When I participate in conferences, retreats, roundtables, and panels I don’t see many men with migraine. What I never see are black men with migraine.
Amin Nathari, 55 years old, was only seven when he had his first migraine. He was in school and had a headache so bad that it brought him to tears. The nausea was intense, and he almost felt disoriented due to the pain. People from school went to the restaurant across the street to get Amin tea and toast and he went to the back of the classroom to lay his head down on the desk. This would happen several times more over the school year.
The school theorized perhaps Amin was straining to read the blackboard which caused the headaches. So, his parents took him to the eye doctor a total of three times. After the third visit, the doctor told Amin’s mother he had 20/20 vision, no issues with his sight and not to bring him back. This was in the 1970s. Aside from a few occasional attacks over the years, migraine had gone into remission.
The attacks didn’t appear again until 1995. At this time, Amin was diagnosed with migraine by his primary care doctor who had some experience in treating patients with migraine. He was prescribed a beta blocker for prevention and was given samples and a prescription for Imitrex. In 2005, Amin had a consultation with Dr. Alexander Mauskop, Director and founder of the New York Headache Center. After reviewing his migraine journey, he diagnosed Amin’s childhood headaches as migraine. In the 1970s, childhood migraine was rarely diagnosed therefore his went untreated.
“Words Make People”
Amin, fortunately, has never really bought into the idea that you shouldn’t show pain when you are dealing with something. However, he points out, “you have to be selective and you can’t show it or be vulnerable around those people who would seek to exploit you because of it”. Amin feels that it’s important to for family, close friends and anyone in your close circle to understand those things about you, especially migraine because it is a chronic disease with ebbs and flows.
When it comes to migraine, Amin never want to be referred to or seen as a sufferer. “I thrive to the best of my ability with migraine.” Despite living with chronic migraine Amin has written and published eight books. Writing and music are his two primary activities when he’s pain-free. Migraine has taught him how to improvise at a moment’s notice and how to be flexible in life. He’s learned that he is extremely resilient, possibly more than what most people can endure, and to be patient with himself.
“Words are, of course, the most powerful drug used by mankind.” Rudyard Kipling
As many know, I refer to migraine as a thief who steals away so much from our day-to-day lives. I wanted to know what migraine has stolen from Amin and besides the freedom of being able to plan in advance, migraine has dramatically altered his ability to earn a higher income. There is a lack of education and awareness among the people he has worked for. The entire process of explaining became demoralizing and at times, humiliating.
Migraine and Support
Amin experiences about 12 or more attacks per month. Sometimes he is fortunate enough where they last only 24 hours. All too often, however, they can last three or more days. Over the past two years, he is finding that he’s having less attacks, but the intensity is greater than before. Amin takes a 30 minute walk every morning (when migraine allows) and practices meditation. Acupuncture has also been very helpful in managing his migraine. Being outdoors is something Amin loves. So much so, he moved to Florida from New Jersey in 2016.
He also loves spending time with his family whenever possible. Amin is married with eight children and three grandchildren. His family is always checking on him with a few good friends doing the same. They get it. His wife understands his journey and is very empathetic. Amin admits that although he appreciates the support from his loved ones, he doesn’t want to become dependent on anyone and feel like a burden. Aside from having someone drive him when he can’t do so himself, he forges ahead on his own.
After his marriage ended in 2012, Amin decided that this pain journey would be his and his alone. He didn’t want to be in a position again where he felt unimportant or burdensome. He has learned to not feel like there has to be a certain level of productivity every day. Learning how to maximize what can be accomplished on the good days. Amin cherishes those days. Every pain-free day is a blessing and a mercy for him.
“Migraine is NOT a bad headache!”
To Amin, migraine is a life-altering challenge that is further complicated by the fact that it is “unseen” and thus, people can’t relate or don’t take it seriously. Migraine disease is just as much a disease as those that are seen or visible. He abhors when people make light of migraine by describing the most basic headache they may have as a migraine when they have no idea.
This is God’s Test
Faith has played a significant role in Amin’s journey with migraine. He practices Islam and he points out that in some cases it has been challenging for him. He states there are many people as Muslims who take a defeatist attitude around chronic illness. It is often said that it’s “God’s test for you”. In Islam, one of the things that they believe, that is central to the core to the faith, is that any type of pain or illness is an expiation of someone’s shortcomings.
Because of that you would tend to have people that are dismissive, although not necessarily intentional. He’s accustomed to hearing, “I pray it gets easier for you”, and then the conversation moves on. While his faith can appreciate that, as a human being he would like a little more empathy.
Another challenge was fasting during the month of Ramadan. Skipping meals is a trigger for migraine, however, as a practicing Muslim, fasting from sunup to sundown during that holy month was an important part of his faith. Amin noticed his attacks would always become worse during that time. Dr. Mauskop told him that even though this was important to him, he had to stop fasting.
Hearing that was hard for Amin. It took the wind out of his sails until he started to focus on one of the central things he was taught in Islam. God gives exemptions to those who are unable to fast. There are other things he can do to stay in the spirit of that holy month, like feeding the poor. Fasting is an important but small part of the month Ramadan. It can still be observed without abstaining from food or drink.
No matter what faith you practice, or which challenges you encounter, there are going to be times when we have to make changes that we aren’t always eager to accept. There are workarounds and different avenues toward the same objective. We just have to be willing to go another route. When it comes to the management of migraine and headache disease, lifestyle changes, modifications and adjustments tend to be necessary as part of our treatment protocols.
Race and Migraine
Fortunately for Amin, he has not encountered, felt or experienced any unconscious bias during any doctor appointment or visit to the emergency room. Race and gender have not been a factor in receiving adequate pain management. Thankfully for Amin, he’s found doctors who were attentive and receptive, although not always knowledgeable, and a few who were really good. He can recall one experience where he felt his pain was diminished due to being a black male and it was by a black woman he reported to at work.
This woman said to Amin, “Can you give me a heads up when you’re going to get a migraine? I have to rearrange how things flow for the day and knowing in advance would help”. After looking at her like she was crazy, he said to her that migraine doesn’t work like that. It’s not like flu symptoms before the onset of the flu. Amin wondered if she would have said that to him if he were another woman or a white man that reported to her.
When asked if he thinks pain of black people in this country is treated differently compared to white people, he says yes. “(White people) are so used to us suffering in silence. And I’m sure that among the racist lot, there are plenty of times medical professionals stigmatize those of us seeking treatment, thinking that we just want drugs. It’s deplorable; and I don’t paint everyone with one broad brush stroke, but I believe that is the reality far too often. The stereotypes live on.”
Q. Amin Nathari is widely acknowledged as a critically acclaimed author and lecturer, and one of the leading and most passionate voices of his generation on the contemporary socio-political challenges and issues of our time. Nathari specializes primarily in the analysis and documentation of events and issues that impact Muslims and the Islamic experience in America today. He is a renowned and respected activist and servant-leader in the Muslim American community for over twenty (20) years. He founded the Islam in America Movement (IAM) in 2008, and serves as its National Representative.
A dynamic lecturer and highly sought after public speaker, Imam Nathari has delivered hundreds of lectures and presentations at more than one hundred (100) mosques and Islamic centers and institutions of higher learning including some of the most renown public and private colleges and universities in the United States. He has engaged a broad and diverse range of audiences; both small, intimate groups as well as gatherings numbering in the thousands.
Nathari is the author of ten (10) published books; his most recent book is entitled The State of Islam in Black America. Currently, Nathari is currently working on his memoir (working title) Going Back to Move Forward.
1. “More Than Just A Headache.” Society for Women’s Health Research, swhr.org/wp-content/uploads/2019/08/SWHR_Migraine_Toolkit_What_Is_Migraine.pdf.