S2:Ep8 – Striving to Live Well: Tips from HealthyWomen

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 in part by our generous sponsor, Lilly.

We’re tapping into leading women’s health resource HealthyWomen as we speak to their CEO, Beth Battaglino. Beth discusses the importance of prioritizing your health, staying educated about your conditions, and having open communication with friends, family, and healthcare providers. She shares resources HealthyWomen offers, including patient stories, vetted educational material, and more.

For more than 25 years, Lilly has been committed to helping people affected by headache, investigating more than a dozen different compounds for the treatment of migraine and cluster headache.

Molly O’Brien: Hello, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re discussing how migraine specifically impacts women. To do so, we’re tapping one of the nation’s leading health information sources, HealthyWomen.org. I’d like to introduce our guest, registered nurse and HealthyWomen.org’s CEO Beth Battaglino.

So Beth, can you tell us a little bit about yourself and a little bit about the website HealthyWomen.org?

Beth Battaglino: Of course. So HealthyWomen.org is the leading national not-for-profit women’s health organization. We started in 1988, before the website was even born, and then we launched HealthWomen.org in 1997. We were the first women’s health site to go live, addressing all women’s health and wellness issues. 

And what makes HealthyWomen unique and still so relevant is that we provide women with medically vetted information that she can trust. So if you’re looking for health information, if you’re experiencing signs and symptoms and you want to find out more, if you want to hear from a patient about her journey, then you log on to HealthyWomen.org. You’ll get information. You’ll get resources and tools to help you make that educated decision on what treatment is best for you based on that conversation that you’re going to have with your healthcare provider. So it’s a great resource to educate yourself as well as to help you have that conversation and figure out what treatment is right for you.

Molly: We really do live in a time where information is at our fingertips, but it hasn’t always been like that. Can you tell us a little bit about your inspiration to start HealthyWomen?

Beth: I love to see how women’s health has changed and progressed over the years. So when I started with HealthyWomen in 1991 right out of college, people were writing letters and asking — they were just diagnosed, and most women couldn’t even pronounce osteoporosis, as an example. And at that time, our organization was creating a bimonthly newsletter that we would mail to people. So it was a four-page newsletter that people subscribed to, and I would mail them the information. 

And then I started a database because I kept looking for the same organizations, so I’m like, “Instead of constantly trying to go back and duplicate, let me start putting this into the computer.” And so it just continued to build.

You may remember this, but in the ’90s is when women’s health — we started first doing the clinical trials on women, because before all clinical trials were done on men. And so the Society for Women’s Health Research and Phyllis Greenberger, who is now part of the HealthyWomen team — her mission was to make sure that we changed that and that we looked at women — women’s health is different, our bodies are different, and that we needed women included in clinical trials.

And so she won that fight, and now you see women are included in clinical trials. And there’s still more to be done, but it was just — the ’90s was a such a — women’s health was such a front-burner issue, and it provided the perfect base for HealthyWomen. 

It’s providing women with information 24/7, right? So it’s on topics from osteoporosis to yoga, but also we’re here for those conditions that women may not want to bring up with their healthcare provider or think that I’m the only one suffering from this. And when they log on to our site and realize they’re not alone, it’s a win, right, because then she feels validated, and she feels maybe a little bit more empowered, and she gets more educated. And then she can have that conversation with her healthcare provider and begin a change and hopefully for the good.

Molly: It is super exciting to see the impact and change over many decades, so kudos to you.

You kind of shared a little bit about different sectors and topics that you can find on HealthyWomen.org, but what information can migraine patients head over to HealthyWomen.org and find?

Beth: Some people don’t even realize they have a migraine, right? They just think it’s a headache. So you can find everything from symptoms — “Do I have the symptoms of a migraine? So is it related to hormones? Do I have a family history? Does my mom suffer from migraines, or did my grandmother have migraines?” 

There’s so much other information that you can get at our site too. It’s living well. It’s listening to other patients share their story, their successes stories as well as their failures. It’s steering them to — here’s healthcare providers that specialize in migraines, so making sure that you have that access or link to a database of how you can find the headache specialist. 

But more importantly, if you do have migraines and you want additional resources, you’re going to go to our site and find all those resources that are validated, that have been validated by experts that you can trust, and you can feel comfortable in visiting those websites and getting the information, whether it’s on new treatments, clinical trials, or hearing from additional patients that are living, but living well with migraines. 

And there are so many patients that are living well with migraines once they find that right healthcare provider to help them and the right treatment or cocktail option for them. And what I think is [sort of?] positive is that there continues to be new research and new treatment options available for people that are living with migraine. So you’re going to find a wealth of knowledge but also the links to those other organizations such as yours that we want to make sure people that are living with migraine know about.

But you can also get information on how to — everything from health and fitness to eating right to just managing your overall health, and reminding especially women that we need to put ourselves on the list. We need to start prioritizing our own health, because if we don’t start taking better care of us, we are not going to be there to take care of our families. So it’s that validation that, yes, we are important, and here’s a website that can help you and remind you that you’re important and that you need to prioritize yourself and your health.

Molly: And I totally agree with that. I do think it’s important to maintain an overall healthy lifestyle because that really can impact how you live with a chronic condition like migraine.

And we do know that migraine can impact different areas of life, and that includes our relationships. How do you see migraine or other chronic conditions impacting interpersonal relationships, and do you have resources in HealthyWomen that can help with those relationships?

Beth: We do, and I think any chronic condition — and what we always look at from HealthyWomen’s perspective is relationships and sexual health play an important role on overall health. So, yes, I can’t imagine — I do not suffer from migraines, but I have spoken to a lot of women that have, and you just think about their path and their journey and the impact that it’s had on their marriages or relationships and that they’ve lost chapters of their lives, whether it’s a migraine on their wedding day or on their honeymoon or even their jobs. I mean, I know nurses that live with migraines, and you cannot always take off or take an extended time off from the hospital. 

And so how do these women kind of figure out — or what’s the formula? And I think, going back to your question about the sexual health, yes, it’s an important piece. And so it’s giving them information. It’s giving them new information on treatments that can help manage. 

And one, specifically, type of migraine is chronic migraines, right, so where women are suffering with 15 or more migraines a month. I can’t imagine. I mean, sex wouldn’t even be on the table for me when you think about 15 times a month that you’re living with these chronic migraines. So it’s providing her the tools and the resources and also hearing from other women that are going through the same, similar health issue as they are.

Molly: And I think that’s so important to hear, to know that there are resources out there and to remind people that they’re not alone in what they’re dealing with, whether it be migraine or another chronic condition or illness that they are dealing with.

Beth: And it can also be the medication too, because medication can play — when you think, it’s not just migraines but anything from heart conditions, going through cancer treatments, anything that you’re doing for a chronic condition. The potential of it affecting different aspects of your health, including sexual health, [inaudible] very high. So making sure that they realize that they’re not alone and that it is a conversation that they should be having with their healthcare provider and their partner as well.

Molly: And that’s great too because we know that communication — and good communication — is so important in any type of relationship. And sometimes things aren’t easy to talk about, so making sure both sides are having those conversations is always good.

Living with a chronic condition like migraine can be difficult. You’re already dealing with a lot. Do you have suggestions on how to best have these conversations with family and friends on how to live life?

Beth: That’s a great question, and I think my advice would be just be very, very honest, because so many people — and what we’ve learned and what I’ve learned in working in the women’s health space and working on so many migraine programs is that many of these women are missing so many different functions because of their migraines, and they can’t control it. And as I shared, I have a few nursing colleagues that live with migraines, and so they have to make adjustments. 

And so you may see — when you think about it, in the hospital you have very bright fluorescent lights, and I work in maternity and the nursery. So you’ve got these crazy lights on all the time, and so you’ll see a nurse wearing sunglasses in the nursery, and you’re thinking, “That’s crazy,” but it’s a trigger for her. So even when you’re having a migraine, those bright lights are just painful. So she has to adapt and wear sunglasses.

And where I’m going with this is that having those honest — being very upfront and very honest conversations about your condition and — let’s take migraines for the purpose of this conversation — letting people know maybe what triggers your migraine, what it feels like, and that you may not be able to attend because of a migraine I think is the way to approach it. It’s just being very honest, upfront. 

And people are curious, so sharing what it’s like to live with migraines and what you might need, like comfort, and if people — because friends want to help, so if there’s things that your friends can do for you, they want to, so share. And I feel like that’s the biggest hurdle for a lot of us is that we do feel like we’re Superwoman, right, and we don’t need help. 

But it’s okay to ask for help sometimes and just say, “Here are three things that I could — would you mind stopping at the grocery store and picking up X, Y, and Z for me? Could you just pick up my dry cleaning?” Or, “You know what, I’m not going to be able to — I can feel a migraine coming on, and my son needs to go to a birthday party. Would you mind picking him up and taking him and driving him home?” That’s a huge help.

So I just think friends — once you let that guard down, and you share what you’re going through, I think you’re going to find that you’re going to be able to live well — live better, because other people understand and will be right there to help you.

Molly: Can you talk to us a little bit about pregnancy and managing migraine if you’re working towards becoming pregnant or managing migraine through pregnancy?

Beth: If you are thinking about becoming pregnant and have migraines, and your OB-GYN may not know that you have migraines, it’s important to make sure that you share that information, so taking that family health history question very seriously. Because maybe your current medication might not be the appropriate choice if you’re thinking about becoming pregnant, so making sure that your healthcare provider understands that you’ve had migraines. If you have a certain class of migraines, sharing that information, and also making sure that you share the medication that you’re on for helping you to manage those migraines is going to be really important.

For women that are pregnant, in the beginning it’s a little bit rocky because the hormones are all over the place, but they seem to stabilize when you’re pregnant. So you may find that your migraines level off, and then you start to increase after you have the baby, because your hormones will fluctuate again once you have that baby. 

But managing migraines while you are pregnant will be — your healthcare provider will know and will work with your neurologist or whomever your migraine specialist is to make sure that the medication you’re on is safe for you as well as safe for the baby. But, ladies, this is what’s so great about now is that there’s other treatment options available, so they’ll be able to figure out what treatment is best for you during this special time of your life.

Molly: And again, it is always rewarding when there are tools and resources out there to find help, so hopefully one can do that. As we continue looking at how migraine or chronic illness can impact one’s journey in their personal relationships, can you talk to us a little bit about either your advice as you manage a chronic illness and parenting or any resources that HealthyWomen offers for those managing a chronic illness and parenting?

Beth: Well, that’s one great thing that we have at HealthyWomen is we’ve got so many great women that are living with migraines and chronic conditions that are sharing their successes, from having babies to managing careers to managing careers while having little ones in the house, and living well with their chronic condition. So that’s one of the pieces that I’m so proud of. 

And as I stated before, it’s not always successful, right? But you learn from others, and so you learn from other women some of the hurdles that they’ve experienced but how they got to a better place. So I think for women today that are living with chronic conditions, that through clinical trials, through ongoing research, through evolving practitioners, and nurse practitioners now playing a bigger role in our healthcare and taking more time with patients, and the physician’s role as well as the PA role, there’s just so many people that make up our healthcare teams now that you will find that right practitioner for you who’s going to hold your hand and make sure your questions are answered and that if your treatment isn’t working, they’re going to find a formula or a treatment that will work. They’re not going to give up on you. 

So I would say make sure you understand your signs and symptoms. Ask the right questions. And if you’re getting information, go to organizations that you know you can trust that have that medically vetted information so that you can feel confident that the information you’re reading and the questions that you’re asking are going to be valid.

Molly: And Beth, talking to you has been so rewarding for me, and hopefully it’s been rewarding for our listeners and viewers as well. I think what’s really inspiring is that you continue to say “not only living but living well,” and I think that’s a goal that so many women are really striving towards. So I really appreciate that “living well” — not just living, not just getting through, but living well. So really hoping that we can all reach that at some point as we all try to.

Beth: I know, and I’m trying to. I’m [not?] allowed. So, yes, put yourself on the list, ladies, and make your health a priority, and it’s all about living well.

Molly: Wonderful. And that’s all for this episode of Spotlight on Migraine. I’d like to thank our guest, registered nurse and CEO of HealthyWomen.org Beth Battaglino.

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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 Eli Lilly and Co.

*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.