Between Advocacy & Awareness: A Conversation With Qasim Amin Nathari

Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. It could come while you're out with friends, running an important meeting or just with your family at home, a spiraling thought that leaves you feeling helpless. That's why you have your self-care, your coping strategies. That's why you have us. I'm Nora McInerny and this is The Head Start: Embracing the Journey, a podcast where we'll be taking all those things you usually save for your friend group out into the open so we can all find a bit of optimism.

I'll definitely be sharing my experiences and vulnerabilities and trying to pick up some things along the way to work into my own routine, but this show isn't about me. It's about life. And wow, that just made it sound very deep. And I guess it will be deep, but it won't be heavy. For those battling Chronic Migraine, these conversations are going to be even more helpful and relatable, so definitely stick around. This show is brought to you in partnership with AbbVie. So first, let's hear some important safety information and stay tuned to the end of the podcast for more.

Speaker 1:

Indication: BOTOX^® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.

It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).

Important Safety Information: BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

Please see Important Safety Information, including Boxed Warning, within this podcast or on the website below.

Nora McInerny:

Hi everyone. Welcome back. When I was a kid, there were days my dad couldn't get out of bed. These were days we knew we had to be quiet, which is a hard thing to do when you are a kid because any loud noises, our feet running up the stairs, me screaming at my little brother while we fought over the remote control, were too much for our dad. Behind the closed door of my parents' bedroom, my dad would lay in the dark with a cold washcloth over his eyes. We were just kids, so we didn't know how serious our dad's migraine attacks were. We didn't know that he really couldn't handle the noise or the light. There was no way for us to understand what it felt like to be inside his head. At some point, I learned the word migraine, but I don't remember ever talking to him about it. When he had an attack, he would disappear back into the room and we'd do our best to tiptoe around the house and around his suffering.

As a veteran, there was a lot my dad kept to himself probably to protect us and also to protect him. He wasn't raised in a generation where the words men and vulnerability belonged in the same sentence. He was from the suck it up generation, the quit your whining generation. That kind of mentality forces people to internalize their struggles, and that's what we're going to talk about today, making space for not being okay in a culture that continues to try to suppress vulnerability.

Our guest today is Qasim Amin Nathari, an author, independent scholar and advocate who's been diagnosed with Chronic Migraine. In 2021, Qasim started Black Men Have Migraine Too, an initiative focused on migraine disease awareness and advocacy for Black men, and the challenge in impact of disparities in diagnosis and treatment. Qasim is also an amazing activist specializing in the Islamic experience in America today while authoring 10 published books including an upcoming memoir. We'll be talking to Qasim in just a bit, but first it's time for a chat with my buddy, our resident headache specialist, Dr. Rhyne.

Hello, Dr. Rhyne.

Dr. Rhyne:

Hi. Hi. Hi. Good morning.

Nora McInerny:

Are you doing well?

Dr. Rhyne:

I'm doing well. Every time that we say goodbye at the end of an episode, I do count the hours, Nora, until we can get back together again.

Nora McInerny:

I am paying attention to my head. I am paying attention to my body. I am learning so much. So thank you for doing the hard work of going to medical school.

Dr. Rhyne:

No problem. I appreciate what you're doing for me, too, because I find myself putting a little bit more jazz into my voice the way that you do.

Nora McInerny:

Oh my gosh. Well, mutual admiration society here. Here we go. So we are having this conversation about meeting people where they are because no two people are alike. Health conditions are not just one size fits all. The symptoms vary depending on the person, depending on their environmental factors, their physicality, their socioeconomic factors, all kinds of things. Both historically and stereotypically, men are much more reluctant to find help for what they think or our society thinks are vulnerabilities. So I want to talk about some of these challenges.

Dr. Rhyne:

Yeah, it's an issue. Yeah.

Nora McInerny:

And I want to talk about who is living with Chronic Migraine in this country. Give us the numbers because I imagine when the average person hears Chronic Migraine, they picture a woman like me, a middle-aged white lady.

Dr. Rhyne:

It's true. There are 40 million people living with migraine in the United States and there are 3.3 million Chronic Migraine patients in the United States. And that's no small number. I mean, for the audience listening, 40 million people living with migraine in the US, that is more than type 1 and type 2 diabetes combined. So we're talking about one in four households, one in five women. You talk about the stigma and the reluctance of men to come forward. It's an issue for all people living with migraine to come forward regardless of their background, their race or their gender. But for men, particularly difficult. And then for other reasons, we see difficulties in people of color, particularly men of color coming forward because of social and cultural components that make it even more difficult for them to come forward, too. You lump in a big old helping of not enough doctors to do the work, and it really becomes this huge issue.

Nora McInerny:

So part of Chronic Migraine is awareness and it is also stigma specifically for men. So from a doctor's perspective, from a man's perspective, how do you work to break down the stigma associated with Chronic Migraine, especially for men of color and especially, for the sake of this episode, for Black men?

Dr. Rhyne:

Yeah, so my clinic is in Chicago, Illinois, God bless it. Very diverse population. Huge Black population here in the city. And so it is my pleasure to care for people of color on a very regular basis. The heartbreaking experience is they come in and they don't trust me right away. There's expectations initially that I'm going to be dismissive, that I am going to be slow to help, that I am going to drag my feet towards therapy.

And so to your question, the way that we break that down is by simply being honest upfront and saying, "Look, I feel it coming off of you. You're hesitant. You don't know if you can trust me, and I just want to talk to you about what's going on. I want to hear your story. I'm here for you. We can do better. We can help you be better. I want to hear about the things that you're missing out on because of your headaches and migraine attacks. What do you care about?" And that's the stuff that we start fighting for. And I think that that's the place that you start with is just human beings sitting across from each other listening to stories, talking about what matters and what we can do next. And I think if you approach it that way, regardless of what underserved population that is, just talking to human beings does the trick.

Nora McInerny:

Yeah. When we're talking numbers, all those big, huge staggering numbers, the reality is also that people of color, Black people, Black men especially, are statistically under diagnosed in the Chronic Migraine community. Why is that?

Dr. Rhyne:

Yeah, again, a million different reasons. So the-

Nora McInerny:

Let me just ask you a huge, big systemic question and place it on you.

Dr. Rhyne:

Yeah, no. It is. No, it's good. And we have to start asking these questions because this is how this stuff gets fixed. So somewhere on the order of one and a half million Black men are dealing with migraine in the United States. So the vast majority are dealing with these headaches without any support, no formal diagnosis, no therapy, which makes migraine attacks worse. And that doesn't even account for the Black men who have Chronic Migraine as it's difficult to provide statistics for that. So for all of those reasons, yeah, we have to talk to these folks and get them taken care of.

Nora McInerny:

I'll be right back after the break with Qasim Amin Nathari. So stick around.

Welcome back to The Head Start: Embracing the Journey.

Qasim, welcome to the show. Let's start by getting to know you.

Qasim Amin Nathari:

Yes, thank you. I am one of what seems to be five Black men in America living with Chronic Migraine. I say it in a joking way, but honestly y'all, I'm dead serious when I say this is how I feel. I'm one of five Black men in America that lives with migraine. And even the marketing and the advertising, you wouldn't think that Black men had this issue. And I have lived with migraine for most of my life. I was diagnosed as an adult. In getting that diagnosis, I found out that the occasional headache that I had were also migraine. It wasn't until later on in my 30s that these headaches started to become excruciating. And then I went to talk to my primary about it, and as soon as I started to describe what I was dealing with, and it was, okay, it's clear you have migraine.

And then at that point, the process went from there to where they escalated more, and then I finally got a diagnosis. It's definitely had an impact and has totally changed the way I look at life even, the way I manage Chronic Migraine, the way I manage relationships. All those things that are part and parcel of this human journey called life, Chronic Migraine has made me look at things with a different perspective through a different lens.

Nora McInerny:

Qasim, can you tell us about what your journey to getting a Chronic Migraine diagnosis looked like?

Qasim Amin Nathari:

Yes. After being prescribed a number of different medications by my primary and not really having success, I mean, I had a management plan, but it wasn't anything that was effective in my situation. They just started getting very, very bad. So finally, I started doing research on my own. One of the things that I've always tried to do and I've always tried to take initiative and take the lead in knowing as much as I could about migraine. So one day I'm in the bookstore doing some research and I come across this book, What Your Doctor May or May Not Have Told You About Migraine. And looking at the back of the book, I saw that this doctor was located in New York. So I'm in New Jersey at the time, so ding ding, it's an aha moment. I'm going to contact this doctor.

And I said, "This man is busy. He's a world renowned neurologist, but I'm going to see if he'll see me." So I wrote him an email and in two days I got a call from his office, said that he wanted to see me. One of the first things he told me with my first meeting with him after going over my chart and everything else like this, he said, "Listen, I know your faith is very important to you, but I'm going to have to tell you something that you're not going to like. You're not going to be able to fast Ramadan anymore." The Muslim month of fasting when Muslims all throughout the world don't eat or drink from sunrise to sunset. So of course, that took the wind out of my sail. But the fact that he understood that about me at the initial visit, for me that was very important because it really showed that he was really an empath and he was really connected to how this reality would affect me.

So that's when I started this journey that I'm on now in terms of management and now we're at this point all these years later where it's part of my reality. I live under the assumption that this is going to be my reality for the rest of my life.

Nora McInerny:

Yeah, I imagine it's probably a relief to have a word, a name, a diagnosis to go along with something that can be so debilitating, so scary.

Qasim Amin Nathari:

Yes, definitely.

Nora McInerny:

Yeah. And I'm just wondering, Dr. Rhyne, why does it take so long for some people to arrive at that diagnosis of Chronic Migraine?

Dr. Rhyne:

Yeah, the core issue, Nora, that we struggle with in terms of getting diagnosis for patients is migraine in general is profoundly underdiagnosed. So the CAMEO study is wonderful work. That was an epidemiological study to look at the frequency of appropriate diagnosis and sort of, in general, particularly for Chronic Migraine, what we see. And so of those people with Chronic Migraine that are out there, only half come forward looking for help is the first piece. And so you heard Qasim share how he thought what he was experiencing were just regular headaches.

And I always hear that from patients. I always think it's really interesting to hear that comment because if your foot hurt so badly all day long, you would immediately run to the doctor. But if your head hurts, we all say, "Well, it's just a headache." This idea that headache is acceptable or a normal part of the day is this camouflage that Chronic Migraine wears that keeps it sort of present and part of the conversation but never really dealt with. And so the idea of a man dealing with migraine attacks is generally something that, for the most part, is not looked at even for those docs who are finding that diagnosis out there appropriately. Access to those physicians who understand the diagnosis for all of us, again, let alone people of color, let alone men. And this is tragic.

Nora McInerny:

Yeah. Where does Qasim sit in all of this? We've talked about statistics before, but remind us of the number of Black men living with Chronic Migraine in America.

Dr. Rhyne:

1.5 million Black men in the United States have migraine we think. And as you can imagine with the lack of data associated with Black men who have Chronic Migraine, it's difficult to provide statistics for that specifically.

Nora McInerny:

Qasim, you sit at the intersection of not just having Chronic Migraine, but also being a Black man in America. And we do want to have time and space in this episode to talk about self-advocacy and that journey for you through your experience with Chronic Migraine.

Qasim Amin Nathari:

I'm not exaggerating. I was absolutely horrified that the numbers were that bad. But at the same time, I started to do some introspection, Dr. Rhyne and Nora, and I actually said, you know what? It really shouldn't surprise me because as Black men, we oftentimes don't deal with or aren't proactive about issues regarding our health and things of that nature. And then the other part is just the reality of the disparity in diagnosis, treatment and things of that nature. So it became kind of my mission to try to do whatever I could to connect with other Black men. But even now to this day, as of a week ago, I had a meeting and we were talking about these issues. And every time, I'm the only Black man in the room. We need to see more Black men reflected in advertising and in the marketing and any outreach if we are really going to do anything about getting people diagnosed and ultimately treated.

So it is really a daunting challenge. And I'm at the point I've become exasperated sometimes because I don't know what to do and I don't have the bandwidth to just be online tweeting and posting all day to try to bring people into this safe space that I'm trying to build for Black men to talk about Chronic Migraine. But it's a reality that I think is going to have to be confronted. And I'm really looking for allies or anybody that could give me any tips to try to help reach some of those people that fall within those glaring statistics because it's really sad and it's a problem.

Nora McInerny:

It is. And I hope that that's what this episode does. What would more representation have meant to you for your diagnosis, do you think?

Qasim Amin Nathari:

I think certainly would've at least had to give pause to the fact that these weren't just regular headaches because I was a basketball player and I was a DJ as well that kept a lot of late nights. That's kind of how I excused a lot of my headache. So I think had I seen more representation and had it been kind of something that I would even consider as my reality, then I would have been more prone or more apt to say, "Maybe I need to go to a doctor and have this conversation about Chronic Migraine." And one of the things I've always tried to pride myself in is that, as a Black man, I've never been one that's been shy to go to the doctor. So I've taken pretty good care of myself. Sometimes I tell people my age, they don't believe how old I am because I've tried to pretty much stay in decent shape and all that.

Nora McInerny:

Qasim, you've spoken openly about how a segment on Good Morning America inspired you to want to do more for others. Tell us more about that.

Qasim Amin Nathari:

The fact that I didn't see anybody that looked like me. And then when I saw that Black woman on Good Morning America, it was the first time in all of my years, and I'm a communication strategist, so I'm constantly watching and looking at content or whatever. That was the first time I ever saw anything on primetime TV, morning or night, that focused on migraine. I had never seen it. And the fact that it was a Black woman made me... I went right on Twitter and I tweeted to her and to Dr. Jen Ashton, who hosted the segment, the chief medical correspondent for ABC, and I told them just how much this segment resonated with me. And from that point, the woman and I connected and she actually interviewed me for her blog, and she called the story Black Men Have Migraine Too. And that became the impetus for the organization that I started, and I named it the same thing as the interview. Black Men Have Migraine Too.

Nora McInerny:

I would love for you to tell us about this community and about this initiative.

Qasim Amin Nathari:

Sadly, and I'm just being just candidly blunt and honest, it's only a community on paper because I can't get Black men to enter into that space. I get an occasion to retweet from a Black man that deals with migraine. But in terms of how I would like to see it grow, I just can't seem to get men into this space. And it is really, really becoming frustrating for me. And which is one of the reasons why every time a media opportunity crosses my desk, I take it. I don't care what I'm doing. If I have to drop something on my schedule, I take it because I'm determined to amplify and broaden this conversation. So I think if the commercial imagery and the commercial representation around this disease becomes more inclusive, then I think that that would also create a lane for a safe entry into more conversations about Chronic Migraine.

I didn't have any illusions now, by the way, because, again, I'm a Black man. I understand the nature of Black men. There's a certain stigma around talking about certain things. So I didn't think that the flood gates would necessarily open up, but I thought that there would be more in terms of an interest in at least developing a space where we can talk about it and share resources for treatment and diagnosis and things like that. But certainly for Black men, the statistics are just glaring. So it seems like because of the disparities that face communities that are underserved, underrepresented, we're impacted at a much higher level than other communities. So I don't have any illusions in terms of thinking that Chronic Migraine would be exempt from that same kind of disparity.

Nora McInerny:

I know that it can be disappointing when you start something and it moves slowly. And I also think that change does happen slowly, and if you can have an impact on one person at a time, it is not as satisfying as seeing a huge sweeping change. But I have a feeling Dr. Rhyne will confirm for you, you are not one of five Black men in America who have migraine. Qasim was there for a point when you felt overwhelmed by Chronic Migraine?

Qasim Amin Nathari:

So I actually got to the point where it got so bad that in 2011 I had to apply for disability. This is one of the reasons why I try to advocate because for people that ultimately are diagnosed, I don't want people to have to reinvent the wheel. I want to be able to share the experiences that I had knowing that not everyone's experience is going to be identical to mine, but certainly I could shed some light and shed some insight on what it is that you need to be prepared for, both from a standpoint of how to navigate and manage the system, which can be treacherous, as well as how to navigate Chronic Migraine in and of itself.

Nora McInerny:

What have you learned in the past three years with Black Men Have Migraine Too?

Qasim Amin Nathari:

I've learned that there's certainly a need for the advocacy that I'm striving to be consistent in. If I could impact one person, that's a win for me. If one person can learn from my experience or if I could share something and one person picks up on something that I share or that I write and it resonates with them, that's a win-win for me. So that's primarily what I learned, that there's a space for me. I'm not alone. There's so much more work that has to be done. And I hope that, again, just going forward that I can continue to learn and identify places and spaces where I can have this conversation and that I can find people like you, Nora, that will have me on where I can advocate what it is we're trying to do and just constantly raise awareness for this need to address something that is really serious.

Nora McInerny:

Yeah.

Dr. Rhyne:

Yeah, ultimately, the fact that you're advocating the way that you are is the way that we move into a space where we can change that paradigm like you're talking about.

Nora McInerny:

I think anybody who's listening has so much to think about just from hearing your story and hearing the work that you've done. So Qasim, thank you so much for being here today. We really appreciate it.

Qasim Amin Nathari:

Thank you for having me. I appreciate you both.

Nora McInerny:

Thanks for listening to The Head Start: Embracing the Journey. We hope you found something worthwhile here with us today, a new coping strategy, a relatable story, the comfort of knowing you're not alone. I am so happy to be a part of creating this community for all of us, and especially for people living with Chronic Migraine. If you haven't found a treatment plan that is working for you, please do reach out to your headache specialist to explore your options. I truly hope this has helped you find a bit of comfort and maybe a smile, maybe. See you next episode and stay tuned for more important safety information.

The Head Start: Embracing The Journey is hosted by myself, Nora McInerny, executive produced by Yvonne Sheehan. Our head of post-production is James Foster. Our researcher is Ciara Kaiser, and our writer is John Irwin. Original music by Soundcat Productions and Artlist.

Please see additional Important Safety Information, including Boxed Warning, within this podcast or on the website below.