The Silent Struggle Behind the Veteran Mindset: A Conversation With Ivan Perry

Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. 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. 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:

Hello and welcome back to The Head Start: Embracing the Journey. I'm Nora McInerny. Most of us have probably heard the following phrases at some point in our lives: "Suck it up. It's not that bad. Tough it out. Get over it." Maybe we heard these things from parents or coaches. Maybe we heard them from ourselves. And maybe sometimes, like say when I'm sobbing at a commercial, they were right. But if you are experiencing a migraine attack, these phrases are far from helpful. They're actually harmful. They're like telling a person that what they're experiencing doesn't matter, doesn't count. And when you hear that enough, you do tend to believe it, that it's all in your head, that you are just being weak, but it's not and you are not.

Today's guest is pushing back against a culture that defines strength by the denial of struggle and is actively working to create spaces that are accessible and inclusive to people with Chronic Migraine and other chronic conditions. Ivan Perry is a US Air Force veteran, a diversity, equity and inclusion entrepreneur, and a person living with Chronic Migraine. And as always, I am grateful to be joined by Dr. Christopher Rhyne, but today more than ever because Dr. Rhyne is not just a renowned headache specialist, Dr. Rhyne is also a military veteran himself. So, thank you on two levels today, Dr. Rhyne.

Dr. Christopher Rhyne:

It is very much my pleasure. This is a story Nora that I'm really excited to dig into because being a military brat my whole life, mom and dad are both veterans and Air Force officers, was raised on military installations all over the country and then joined myself and an army veteran. And so digging into Ivan's story is really something that I'm looking forward to and I'm glad to be able to bring a little bit of headache love to the military side of things.

Nora McInerny:

So Dr. Rhyne, Ivan is a veteran of the Air Force. How has your experience in the military informed your practice as a medical professional?

Dr. Christopher Rhyne:

It's so much a part of the reality that we actually have marching and running cadences that work to prepare these young soldiers, sailors, airmen, marines for exactly that type of difficulty. Military personnel are meant to be professionals in every way, and that has been my experience working with military individuals, whether they're veterans or active duty, and that certainly was my experience while I was serving as well.

Nora McInerny:

Okay. Let's dive into the conversation with Ivan Perry.

All right, Ivan, I have a question for you.

Ivan Perry:

Shoot.

Nora McInerny:

Do you have any tattoos that you regret?

Ivan Perry:

I have one that I overthink at times. I'm not going to lie, Nora. Do I regret it? Maybe. It was at a time in my life when my brother was about to go to Korea. We were in Vegas, he was stationed in Vegas. We decided spur of the moment, I'm going to get a tattoo. The guy probably wasn't completely sober.

Nora McInerny:

You were in Vegas, you had a Vegas experience, and I have several Vegas tattoos that are a little souvenir that also I didn't think through all that much, but I like to think of these as like, reminders of who I was in the moment.

Ivan Perry:

Yes. I usually plan so much and so far ahead that it's my reminder and I tell my kids it's my reminder that I can be spontaneous at times and I don't want to cover it up for that reason.

Nora McInerny:

Oh, I love that. You mentioned being stationed. You were in the Air Force. What inspired you to join the service?

Ivan Perry:

Actually, it was my dad. So, you know, I was a military brat. My dad did his 20 years. We call ourselves brats only because we grew up all around the place and I loved the military so much. I went to the Air Force Academy.

Nora McInerny:

Wow, wow. Yeah, my father was also in Vietnam. It wasn't his career. What I do know about the military is that there's like a bond, right? Like, you share a bond whether or not you were in the same branch of service, but you also formed a lot of relationships in the service. Tell me about how you met your wife.

Ivan Perry:

The best and deepest relationship, 100%. After graduating from the academy in '05, got intelligence as a career field, and so, you know, once you graduate from your commissioning source, mine was the Air Force Academy, hers was University of Virginia. We met down in this awesome town called San Angelo, Texas, and at the end of a nine-month-long intelligence school training, we waited to start dating at like month eight and we decided, "Hey, we, we are it for one another. Do you want to make this thing happen?" And yeah, we did the dating long distance for months, got engaged during that time when we were away, and we've been married for 14 years.

Nora McInerny:

That's amazing because also I think I need listeners to remember what dating long distance was like before iPhones.

Ivan Perry:

Right?

Nora McInerny:

You were buying phone cards.

Ivan Perry:

Yes we were.

Nora McInerny:

You were sending letters. It was such a, it truly was a simpler time. So, your last deployment, 2010, that last deployment was particularly difficult for you, whatever you're comfortable sharing, but what were some of the circumstances behind those difficulties?

Ivan Perry:

2010, my third deployment to Afghanistan, my mom was diagnosed with cancer at one point, and so I had to fly home on a Red Cross mission. 2010 was rough. It was a rough deployment, especially knowing after going to visit my mom from that Red Cross mission that I would be going with her to start the chemo and be there with her for six days, but that I'd be going back into theater literally, right to where I started and with my dad being in Vietnam, I, we had a heart-to-heart and I told him, "I don't know if I'm coming back."

When you say it and you know it deep down in your bones and you kind of come to that reality that it might happen, it's hard. And so yeah, it, it was rough times. I'm not going to lie, Nora.

Nora McInerny:

Thank you for sharing all of that. I have goosebumps up and down my arms too because my dad wrote after Vietnam saying that the strangest thing was to return to a world so different from the world that he had been in and with an experience that only he had lived through. Even if there was somebody on the other end of a letter, even if you did have that conversation with your dad, even when you were having those conversations with your wife, there are parts of it that are just yours. And then you return to this world, and you have a vest on and glasses and you're sitting in a nice office and that's a huge transition to make and to carry with you. When does Chronic Migraine start to enter the chat?

Ivan Perry:

Isn't that crazy?

Nora McInerny:

Yeah.

Ivan Perry:

Yeah, I started to get headaches, but I was like, you know "Babe, got another headache." And after time she noticed I couldn't sleep in bed. We lived in a nice house in a nice community. It was the first house we ever bought. I was just constantly walking and pacing up and down the stairs and walking around the house. I thought, I didn't even think anything of it. It was reflexive at this time. It was just like you just do it, but the headaches were happening so much and so often I wasn't sleeping. We didn't have kids at the time. We just had a chocolate Lab, and she would roam with me, right? We've had her forever. She's like, "All right, we're walking the house again. Cool."

Over a few months, I wasn’t sleeping, I was still trying to do my job, but eventually my wife kicked my butt. She said, "You need to go to sick care." And when I went over there, they told me I have these things called migraine attacks. When I described to them what's happening, I was like, "I get headaches." They're like, "No, these are migraine attacks." They put me on medicine. That's when it entered.

Nora McInerny:

Even just hearing the word migraine, I heard it as a kid because my father had migraine, but it's hard to contextualize. And you're hearing this and you are even minimizing it, which is a really natural thing to do, but I think it's especially a natural thing for men to do, especially if your job is to be tough, right? And you're a, like, big dude and you're working out with Marines and Navy SEALs and this expectation of masculinity is harmful to men, right?

Ivan Perry:

Yeah.

Nora McInerny:

This need to be perpetually tough, that being tough means that you don't show any vulnerability, that you don't have any weakness. I just was wondering about your experience with that and how we can make this better for men and for veterans.

Ivan Perry:

Yeah. It’s, I love the question because I've been in therapy, which I'm not afraid to say since about 2013 with the Veterans Administration, you know. My dad didn't know how to express his experience and his struggles. It is hard for me to let certain emotions out because I was raised in a guy's be tough and don't cry and get-through-it environment but, you have a valuable experience to give and, and just speaking with other people and just letting them say it's okay to let down your guard. In the military, sometimes you have to have a certain facade.

Nora McInerny:

But you’re also dealing with Chronic Migraine.

Ivan Perry:

Over these times I've learned what it's done to me mentally and what it's done to me physically. What it has done is put a mental strain, like keeping everything in, keeping these emotions in, keeping the struggles of even having Chronic Migraine and not openly letting people know.

Nora McInerny:

I love that you shared that with us. Thank you. Thank you.

Okay, I want to pause for a second and dig into that. Dr. Rhyne, there's a certain level of stoicism toughness that's just expected and that is a whole other podcast, but I am pretty curious how often you see veterans in your practice and if there are any differences in treating veterans versus other patients.

Dr. Christopher Rhyne:

That's awesome that you bring up stoicism. I actually agree with you a ton. I think that sometimes stoicism can be mistaken for professionalism that you're a professional if you just don't say anything about it. If you don't rock the boat, if you don't make waves and talk about what you're experiencing. I see veterans on a very regular basis. My clinic is only about 30 minutes from Fort Knox, and we take referrals from VA facilities on a regular basis as one of the only dedicated headache clinics in the region.

With my time in Chicago, the VA system there is one of the largest in the country and very active, and we often had referrals to take care of patients from that location. And the thing that I find really that is different with military personnel is trying to fight through that stoicism to tell them that they're in a place where they can be honest about what's going on because they're so concerned about the impact that it's going to have.

Nora McInerny:

All right let's get back to Ivan.

Can you put us into almost a single day or time of one of those migraine attacks then what it feels like for you in those moments?

Ivan Perry:

Oh yeah, and it becomes especially tough because at that time, they were happening, and I was minimizing it so much. I just kept saying, "I'm getting headaches. I don't know why." Fast-forward to today, I have to try to migraine-proof my house. All the perfumes I used to get my wife, my kids' deodorants... My kids should wear deodorant, my boys especially.

Nora McInerny:

I know. Why are these so gross? I'm like, wear it.

Ivan Perry:

Yeah, all the smells. A lot of them are triggering. Food triggers, so smells. We have to be careful what we cook in the house. Things that I eat, heaven forbid anybody slips onions in my food, it's a huge trigger for me. Chocolate, it's like one of the top triggers for me. Caffeine. I love my coffee, but like, my neurologist says only drink one because I have to be careful. I have wrinkles in my forehead that my daughter loves to point out because I grimace so much. Moments when I try to get up, the pressure builds so much and there's no relief valve. When you lay down, even in my office that I'm sitting here right now, every curtain and every window is a blackout curtain. I have the ability to completely shut off and even close my doors where I can mostly soundproof my room.

I have sunglasses behind me that I can wear in the office to keep the lights dim, but just imagine someone trying to squeeze your head 15 days a month, and then you try to work and be a parent.

Nora McInerny:

Okay, Dr. Rhyne, we just heard Ivan start to tell us some of his migraine triggers, what a migraine attack feels like for him. If any of our listeners are anything like me, they might need a bit of a refresher course on what some of the common migraine triggers are.

Dr. Christopher Rhyne:

Yes, let's get into it because this is a big deal. Triggers can include increases in stress changes in hormones. There can be external triggers that can set them off like barometric pressure changes, weather changes, extreme heat and cold or specific smells. Sometimes folks will have a hard time with cleaning agents or particular perfumes. There are different types of light exposure or sound exposure that can set them off.

Nora McInerny:

So, when people are starting to notice the symptoms and migraine attacks are happening more often, why might they hesitate to seek help from a doctor?

Dr. Christopher Rhyne:

This one's heartbreaking. A couple of years ago a study came out that found that nearly half of people with migraine hesitate to seek care. It's a huge number and sadly not surprising. In the study, they also tried to get a better picture of why those people hesitate to answer your question, and over a third of those people said they hesitated because they were afraid their symptoms weren't going to be taken seriously. And that breaks your heart. For me in my practice, I mean, they're internalizing all of the questioning they've received their whole life about whether or not their condition is legitimate, are they really having symptoms that are that bad and that they're afraid that they're going to be met again when they see the physician with the same sort of cynicism and disbelief. It's why I try so hard to save a space for them to just share their story at the very beginning. It's really important for the treatment journey, but it's also really important for the trust.

Nora McInerny:

Yeah, it's like the trust is a foundation for the treatment journey. I've actually gotten a lot of feedback from making the first season of this podcast from people who said it took them a long time because they didn't think it was quote unquote, "that bad". And you just have to wonder, like, how bad does it have to be? Like, how bad does it have to be like, for you to feel like you’re, like you matter enough to go see... It really is. It really is heartbreaking and especially because, you know, it feels like the earlier someone recognizes what these symptoms are and goes to see someone like you, the sooner they can receive a diagnosis and find some kind of management plan.

Dr. Christopher Rhyne:

That's exactly the truth. I mean, I always give this example to patients. If your foot hurt so badly that you couldn't go to work one day a month, just one day a month, you would go screaming to the doctor to figure out what's going on. But we have patients who are struggling with migraine attacks, who are still, you know, in the shadows, not coming forward because they're worried they're not going to be believed.

Nora McInerny:

We will be right back with more from Ivan, so stick around.

Nora McInerny:

Welcome back to The Head Start: Embracing the Journey. Let's jump back into my conversation with Ivan Perry.

When you are going through migraine attacks, who is your support system and how have you built that?

Ivan Perry:

Funny enough, it's my family and that includes my pet Roxy, that I mentioned before, who used to patrol the house with me. She was our chocolate Lab from Japan when we lived in Japan, but she was with us for 15 years. As a purebred Lab, that's a long time, right?

Nora McInerny:

Yeah, yeah.

Ivan Perry:

She was part of my support structure when I was struggling. She'd literally be like, on me. And dogs are amazing for veterans. I think what's interesting is that these animals are such a huge support structure. When Roxy passed, we decided to adopt a pup, and so he's actually on the other side of this video. He is a little rambunctious.

Nora McInerny:

He's being so good. Are you serious?

Ivan Perry:

He is. He has a chew toy and he's loving it right now, but we decided to adopt this time... He's Jack Russell and Chihuahua so, you know?

Nora McInerny:

I've got a Chihuahua mix. They're so nuts. They're so nuts. That dog can go forever. Yes.

Ivan Perry:

Yeah. I carry him like a football, but that's my support structure. When I had a bad migraine attack once and I had to go into another room to shut everything down, he, as crazy as he is, he laid on my chest. Even when my kid came into the room to check on me, my daughter, he was just on my chest. He knows when to chill. And my wife and my kids at an early age, and it makes me sad, it breaks my heart too, Nora. I'm not going to lie that they know how much I'm struggling. They know when "I can't talk to dad right now because he's got a migraine attack. “Dad, I know you can't drive me to a friend's house, you know, because I see you've got a migraine attack." It happens so often and that's absolutely heartbreaking, but I know you can't see it and people in podcasts can't see it. But my daughter actually writes notes and I see your monitor behind you, and you have stickies too. But she wrote me a note just saying, "Hey, hope you have a great day. Tell me what happened. Love Vivi."

And so things like that... Man, guy, gal, woman, you know, it doesn't matter who you are, just let the guard down.

Nora McInerny:

Yeah, kids are really good at that. And honestly, like, I understand feeling like having that break your heart a little bit, but I also think it's such a sign that you have kids who have an immense amount of compassion, which is such a superpower. And I also, there's nothing I love more than a note from a kid. Half the art on this wall is stuff that they would've thrown away, but I pulled out and I had like professionally framed because I just think it's like so cute and I love those little notes and that's such a beautiful picture of what a support system looks like. What is your current treatment plan Chronic Migraine wise?

Ivan Perry:

Current treatment is... Well, I try to avoid migraine triggers as much as possible with some of the things I was telling you about, like just the foods, the smells, et cetera. But right now, I have a preventive treatment, and then I have a breakthrough medication. There is a new program through the VA and I love it for veterans where they're trying to increase wellbeing and they've opened up these new clinics with a new way of thinking and offer veterans a chance to use things like physical therapy, yoga, meditation.

Nora McInerny:

I really appreciate you sharing so much of your story with us. It really is. It's an act of generosity and it's really helpful to so many people. I also want to talk about your work. You have your own consulting company, Operation Aspire Group, you focus on DEI. You're talking a lot about, you know, adaptations and accommodations, and we've heard from almost every single person that we've interviewed for this show is how important workplace accommodations could be for managing Chronic Migraine. Can you share examples of what that might look like?

Ivan Perry:

So, from my personal experience, I've had great managers and I think poor managers where I have truly felt they did not believe whether I had Chronic Migraine or not. And I know if you've had guests where you've spoken to that, because I've listened to quite a few of your podcasts and I loved it.

Nora McInerny:

Every single person has almost said that where it's like, "Well, you look fine. How bad can it be? You're here." You know.

Ivan Perry:

“I get headaches too.” So, do you have a culture in your organization where there's a culture of trust, where you can say that to your manager and your team, and they actually believe you? And so that inherent trust, I think, becomes really just foundational to a culture because, are you truly even doing anything with accommodations or accommodating the right people if no one wants to say anything or they feel there's this fear of reprisal or you know, they're going to be treated less than? And so, it just starts with good conversations and focus groups within a company where they say, "Hey, employee resource groups, what are some accommodations, if you're okay with sharing, that you may need?" And then they built it out from there.

Nora McInerny:

So, it's like listening. It's a conversation because if it smells for you, but it's light for somebody else, it's not going to work to just have an air filter, you know, or it's not going to work to just have like the blackout curtains. That's so interesting. I really like that as an answer that it comes down to do you have the culture to have that conversation, and then who is having that conversation and putting it into action?

Ivan Perry:

Heck yeah.

Nora McInerny:

Ivan, thank you so much for being here today for sharing your story with us and for your service. Thank you.

Ivan Perry:

Likewise. It's a, it’s been a lot of fun.

Nora McInerny:

I want to bring back my good friend, Dr. Rhyne, because Ivan triggered a thought or question maybe that I want to get your take on, Dr. Rhyne. Ivan now does consulting work for companies to make their workplaces more inclusive for people living with Chronic Migraine? What are some organizations that people can use to help them find the right way to talk to their employer about Chronic Migraine? Organizations, resources, even just interpersonal tools that you would recommend to people who are trying to navigate talking about Chronic Migraine in the workplace and in their own lives.

Dr. Christopher Rhyne:

Beautiful. Yeah, so here is that call to action. What can we do to improve this situation in our own lives and in the lives of those who are dealing with migraine attacks? Doctor's a Latin word that means teacher. So, my very favorite thing to do is to turn folks on to these types of resources to teach in the room with them while we're going through therapeutic interventions, understanding the disease, and to point them towards places where they could get their hands on more resources. We want to promote that education and activism in the migraine space, so organizations like Miles for Migraine, which is a 5k walk-run. And another great organization, Headache on the Hill, which I'm excited to participate in this year, and we'll be representing some of the physician component going to Washington D.C. to advocate for Chronic Migraine management on a national level.

The National Headache Foundation has wonderful resources to learn more about what's going on, free videos. The American Headache Society also has the opportunity to do continuing medical education as well as other educational pieces. So, both for maybe medical providers that are less familiar with Chronic Migraine management and obviously for patients as well to get more education and resources, it's a great place to go. These are the organizations that I have experience with and see that they do represent migraine patients as well as educate migraine patients, their families, their employers when it comes to migraine, and the impact that it can have on that patient's life.

Nora McInerny:

Thank you, Dr. Rhyne. I always appreciate your insight. There is always so much to talk about every time we talk to each other.

Dr. Christopher Rhyne:

Thanks Nora.

Nora McInerny:

We are so very grateful to Ivan Perry, not only for his service to our country, but for so generously sharing his Chronic Migraine story with all of us. You can find his company Operation Aspire Group by searching online.

If you haven't found a Chronic Migraine 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 and executive produced by Yvonne Sheehan. Our EP of post-production is James Foster. Our supervising producer is Ciara Kaiser. Our writer is John Irwin, and the show is mixed by Nick Cipriano for Bang Audio Post. Original music by Soundcat Productions and Artlist.

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