S2:Ep14 – Tips from Patients: Finding New Purpose

TRANSCRIPT

Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you by our generous sponsor, Teva Pharmaceuticals.

We all know that migraine can derail our plans, including our careers and relationships. It’s not as easy to see the positives this disease can bring into our lives, but our guests are sharing their stories about how migraine led them into the world of advocacy and brought them down a more fulfilling path.

Teva is committed to providing innovative medicines to enable people – including those living with migraine – to live better days. Teva applies a holistic approach to the development of new treatments that focus on the needs of patients. Visit tevapharm.com to learn more.

Molly O’Brien: Hello and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re talking all about managing migraine and your career. You’ll hear from four migraine patient advocates, Alicia Torborg, Paula Dumas, Jill Dehlin, and Erica Carrasco.

Thank you, ladies, so much for joining us.

Alicia Torborg: Thank you, Molly.

Paula Dumas: Glad to be here.

Molly: Migraine can play a big role in how it affects your career. I know some of you, you’ve gone through changes with your career because of migraine, and some of you have flipped it on its head and used migraine to expand your career. So we’ll talk a little bit about how you all manage migraine and work.

Paula: I think the key for working with migraine is all about flexibility. Accommodations matter, but if you don’t have flexibility and a manager who respects that, you’re going to crash, because there’re going to be days that you’re going to wake up with a migraine in the morning, and you’re not going to be able to get to work by the time you’re expected to be there. And if you don’t have some flexibility to deliver without necessarily punching a clock, it’s going to be really tough. 

And for some people, as migraine gets worse and more frequent, they’re going to feel like, “Oh, I have to go to work because I need the insurance and I need the income attached with this, and I feel like crap, and I can’t actually function.” So they’re going to fake feeling well at work, and they’re going to start hiding and thinking that “if somebody finds out that I have migraine, my whole universe is going to fall apart.”

But there are actually more options available to you than are immediately apparent, and I think all of us are living proof of that. We’ve managed to find satisfying, purposeful work that can support us and help other people at the same time.

Alicia: I would echo everything you just said, Paula. There have been times in my life — I was in banking and finance and mortgages back in the real estate boom, and it was an incredibly stressful time. And I’ve said this before, that I was a vice-president. I was a woman when there weren’t a lot of women. I was the only one in our organization. And then I was pregnant, so I felt like that was two strikes. And then I had migraine on top of that. So I didn’t tell anyone, and I remember asking my husband to bring a couch into my office so when I had a migraine, I could just shut all the blinds and lay down on the couch. Not everyone can do that.

But fast forward. My migraine has brought me to the job that I have right now, and I’ve never had a job that I am so passionate about and love so much and love the people that I work with. And I’ve met so many wonderful people. It’s been a blessing, a huge blessing for me.

Erica Carrasco: I built my career around becoming a Department of Defense contractor, and so I worked in cybersecurity for about 15 years. First, I started out as a technical writer. I worked myself up to cybersecurity consultant. But during that time, I was also diagnosed with migraine, and just trying to find a diagnosis, because my migraine symptoms were so bizarre. And many doctors were just like, “We don’t know what that is, that it’s migraine.” 

And so I never told my employers either, but I lost three jobs in a row pretty much because of migraine. With each of those jobs, I went on short-term disability for at least six months. The last job I had that was full-time, I went on short disability twice within five years, and so I was actually in short-term disability when I was laid off. My contract was complete, and so I was laid off during that time. But I was home, and I got the call, and I was devastated. I cried. And honestly, I still am dealing with that today. 

And my personality type is not the type to do nothing no matter how bad I feel, so I knew I had to do something. So I put myself to work. I mean, I was making no income. I was the breadwinner. My husband, actually, was the one who stayed home with our kids, and so I went from working full time, travelling, and having — it was an amazing career, but migraine just didn’t allow it to continue. 

So when I lost all of that, I tried going back to school full time. I figured, oh, maybe I can go to school. So I did, and then I had a major attack, and I had to take a medical withdrawal from school. So with work and school, it’s just not in the cards, at least at this time. 

I still hold out hope that maybe one day I’ll be able to go back to that, but I’m starting to feel like I don’t want that life anymore, because I’m actually enjoying what I do now, working with all the nonprofits in migraine and then doing my own with Achy Smile Shop. It’s given me a purpose. It’s not just work, or it’s not just a career; it’s actually helping people every single day. I talk to people with migraine every single day, at all hours of the day. Three o’clock in the morning, I’m talking to somebody, because I’m awake. I have insomnia.

Alicia: Erica, I have to add too, we love what you do for the migraine community, so thank you.

Erica: It really does give purpose. I mean, I think for all of us, we’ve found something that — yes, we have migraine. Some of us are chronic; some of us are not. But we’ve taken what has been the most difficult in our lives and tried to make it work for us and help other people in the process. I know when I was newly diagnosed and I had no idea what was going on, I did not think that what I was going through could possibly be a headache. That just didn’t make sense to me. 

And so I looked online. I’m a tech person. I’m a techy. So, of course, the first thing I did was look online, and that’s most kids these days. And so when they’re looking for someone with migraine, they’re just trying to understand what’s happening to them, because maybe their doctors don’t understand either, or their parents aren’t necessarily listening to them. They are trying to find someone they can relate to, and so by doing everything that we do, hopefully they find some peace in that.

Jill: I have a saying, “The purpose of life is to have a purpose in life.” And when I became chronic, it was like somebody flipped a switch. I went one month from being episodic, like three to four days a week of — or, pardon me, a month of migraine to having almost a every-day migraine attack. And during that time, my goal was to be a college professor, and I was working on my PhD dissertation and doing my data analysis. I couldn’t even add three numbers together because of the brain fog and the side effects from the different medications that I was on. So, needless to say, that dream did not come to fruition. 

When I got involved with advocacy, I really felt like I’d found my niche, and I found my tribe. And I have to tell you that being with people who have been through the same experiences has been so empowering and so overwhelmingly positive in my life that I’m kind of glad it didn’t work out the way I had planned and that I’m doing what I’m doing. It’s really been a plus in my life.

Paula: I think that purpose statement is really well said, Jill, because for years in my career, I had worked for companies where much of my purpose was attached to the purpose of the company. So CNN, we were going to democratize access to news. And Apple, we were going to change the world one computer desktop at a time, one person at a time. And at Disney, we were going to bring families together and make their lives more magical. 

And that was all great, right, but it is not as rich as what we’re doing here. When you are able to help somebody find hope again, navigate their way back to a more productive, healthier existence — suffer less, live more, is what we say — it matters. It’s super rewarding. So I’m really grateful for the opportunity to do what I’m doing today and because I get to work with people like you.

Erica: Ditto.

Molly: I think it’s so valuable to hear all of your stories, and while migraine might have interfered with your future plans or your career plans, you were able to adapt and change and develop new goals, new plans, and all doing quite well today in those fields. So we appreciate your work that you do. 

I know that was a big thing for me is how migraine just kept pushing on my career, and it was really uncomfortable to deal with, and I didn’t want to acknowledge that I have a disorder and it does slow me down sometimes, whether I like it or not. So I agree with all of you in the fact of finding purpose. Being able to do this with the Association of Migraine Disorders has given me such joy and pleasure and helped me connect with folks like you.

Paula: For anybody who might be struggling with this, we have a campaign called MigraineAtWork.org. You can go to the website, and it has some of the best resources from all of the organizations represented on this podcast as well as who we partner with. And I think it’s a really rich resource, and I’m proud to be associated with it.

Molly: It’s excellent to find new tools, new resources that we can use to help us on our migraine journeys, which are all so alike but all so different at the same time, which is what’s so fascinating with migraine. 

As we kind of wrap things up here, I would like to talk to you about ending things on a positive note. A lot of you have said that the advocacy work that you’re doing has really been positive. But has migraine impacted your life in a positive way? And if so, please share with us.

Jill: Migraine disease changed the trajectory of my life, and even though I had a preconceived notion about what my life was going to be and what I was going to be doing, I think where I am right now has really been a better path for me. And as Paula said, it’s so fulfilling and rewarding and empowering to help other people through their pain and try to find purpose in all of this.

Alicia: I would have to say it’s my career, it’s what I do, and I love doing it. Whether I’m at a conference and people come up to our booth just clamoring for information for their child who they think might have migraine or their husband, there’s not a better feeling knowing that you’re helping someone, giving them some tools that they can take to a doctor and try something new. And just the feeling of helping people is great.

Erica: Migraine for me, yes, it has made life difficult, but it also has slowed me down, and I appreciate the things that I now can enjoy that I never took the time to appreciate before. And time with my kids was one of those things. I’m always on the go. I’m always trying to do something. I just can’t sit still. And so migraine, it made me sit still for a little while, and I actually appreciate that because now I’ve learned what my body needs. I’ve learned so much about myself. I didn’t know who I was, and I think that I’ve learned now who I am and what I need to be happy. And I don’t think I would have had that without having migraine.

Paula: I think that’s all really well said, and I can give you an amen to each one of those. But I for years cursed migraine, and I thought, Why in the world do I have to deal with this? Migraines suck. They’re ruining my life. They’re derailing my career. They’re testing my marriage. It cost me four miscarriages and untold expenses out the wazoo. And I just thought, Why am I carrying this burden? And I would pray, and I would pray, and I would pray, “Please take them away, God.” And they didn’t go away. And I woke up from a hysterectomy, thinking, Okay, they’re going to be gone now, and they weren’t.

But what I have come to realize is oftentimes, those things that are our greatest trials can also produce the greatest joy. And back to what Erica said, where you find the joy and the gratitude from those days that are pain-free, and what Alicia said about feeling the joy of having a sense of purpose and being able to encourage others and give them hope and continue on their lives. And Jill talked about the importance of education and how empowering that can really be.

For me, we would never have the opportunity to do what we’re going here today if I hadn’t gone through decades of brutal pain and trials, right? And so the opportunity to make life different for the next generation is what gets me out of bed in the morning, and I hope that collectively, we can all do that together.

Jill: Amen

Alicia: Exactly. Well, you guys are all an inspiring bunch, and I’m delighted to call you friends.

Paula: I agree.

Erica: Thank you.

Paula: Thanks for inviting us to do this, Alicia.

Molly: It really is empowering to hear you all and see you all at different stages of life and being able to tackle what you want to do and switch gears and change. It really does — I mean, for me, so I know it’s going to help other people too, just be able to listen and hear, “Hey, they’ve been going through this. I’ve been going through the same. I can do it,” because you’re all doing it too, so.

And that wraps up this episode of Spotlight on Migraine. I’d like to thank all of our guests for joining us today, and for all of our listeners, I’d like to thank you as well. Until next time, I’m Molly O’Brien.

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Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

This podcast is sponsored in part by Teva Pharmaceuticals.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.