Searching for Work-Life Balance With Chronic Migraine: A Conversation With Winnielyn Bautista

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. I'm easily fascinated by how phrases and sayings that we work into our daily lives also add an implied pressure to our lives just because we say them all the time. And one of those phrases that I hear a lot, that I've even said a lot, is work life balance. Work life balance as though work and life are opposing forces and as though they have equal weight at all times. Work and life aren't, in my experience, things that can be balanced because our work is just a part of life and when we care deeply about our work, our work is also a part of us. And when we leave home and go to work, we are bringing the same body and the same mind and the same soul and the same problems with us. We cannot leave them at the door. So to me, there's not real balance, but just a constant pull for our time. And with all of those pressures, of course, sometimes it's overwhelming and it's overwhelming for most people.

We can try to ignore it, we can try to stuff it down. We can't deny it. And sharing those times isn't easy. It's actually very scary. And disclosing that, showing people the truth about how you're doing can also have real consequences for your income if you share it in the workplace, in the wrong way, or with the wrong people. This balancing of work's place within our life is just hard and it's even more complicated if you're living with Chronic Migraine, as you may know. A lot of us spend more time at work than we do at home. We see our co-workers or our bosses more than we see our kids or our partners. Our co-workers end up learning a lot about us, often caring about us, loving us, and we like to share stories and feel connected, but nobody knows everything about us. If we have boundaries, that's boundaries, baby, and those are healthy.

There's also a balance, a delicate balance when you do begin to share personal things with co-workers. Sometimes you need to share these things so they can better understand the rest of the life that you are bringing with you to the office. But how much of yourself and your experience do you share with your co-workers when you want them to know your limitations but not count you out, when you want them to understand how you feel, but not pity you, when you want to show up to work as your best self, but your best self is different today? That's why I've been looking forward to talking with Winnielyn Bautista. Winnielyn is here to talk to us about her experience with her career as a physical therapy assistant while living and working with Chronic Migraine. It is a conversation that I hope will be very useful to anyone who has struggled with that blurry line between the personal and the professional. But first, it's time for a chat with my buddy and our resident headache specialist, Dr. Ryan.

Dr. Ryan. Christopher.

 

Dr. Ryan:

Hi.

Nora McInerny:

How are you?

Dr. Ryan:

I'm great. First of all, big life changes. We moved to Louisville, Kentucky from Chicago, and so that's been eating up all the time, but I'm really excited to hang out down here and get to know a new panel of patients and see if we can spread the news about headache medicine down here in Kentucky.

Nora McInerny:

That's so cool. So we're talking about balancing diagnosis and disclosure in the workplace, which is really difficult. For so many reasons, it's such a complicated thing. We live in the era of sharing, the era of oversharing. I read a few articles from the group Migraine Again about when, if, and how you should share chronic illness with coworkers. They recommend sharing your Chronic Migraine diagnosis on a need-to-know basis, not a full-disclosure-everyone's-business basis. Is that what you would recommend to your patients?

Dr. Ryan:

Yeah. First, when we think about the idea of sharing a diagnosis, it really does need to be something you spend some time thinking about. Talk to the people in your life about it before you make a choice. No matter what social media will make you believe, your personal information is the most precious commodity that you have. And so I do agree that sharing your diagnosis should be conditional. You’ve got to make sure you understand the situation that you're in. Even in communicating with your employer about having a chronic illness, you don't have to tell them what it is if you are even going to do it. When I write letters on behalf of patients to employers, I do not list what kind of physician I am. They can look me up, I suppose. I don't list the diagnosis that I'm treating, just that the patient is under my care and this is what I need from you. And so even in communicating to your employer, there can be even a gray area where you have some ambiguity about what you're discussing.

Nora McInerny:

Yeah, I feel that. I mean, there was a reason I didn't tell people I was pregnant till I absolutely had to. I think that's really sound advice. How do you recommend your patients go about bringing up their Chronic Migraine needs or experience with a boss or a co-worker?

Dr. Ryan:

Yeah, Chronic Migraine is an Americans with Disabilities Act protected diagnosis, an ADA protected diagnosis, so you have legal recourse and rights with this diagnosis. That is in part due to ADA laws that it's required that we have access. Something that people living with Chronic Migraine will do is I don't want to ask for anything or I feel uncomfortable asking, but for folks that are dealing with maybe they've got a service dog because they're hearing impaired or visually impaired, they would not have one issue if one of their co-workers had their service dog working with them in an environment together. If it was them asking for control over lights or if we could have an area of the workplace that doesn't have particular odors or smells, if we could have sound control in some sort of way, if we could be working from home, and they can sometimes feel really uncomfortable about seeking that out.

And so the timing and the environment of that discussion I think is really important. I think approaching a management team or your supervisors or superiors, your boss, in a way that is really disarming and casual I think is a really great way to do it. I think that vulnerability in this sort of situation is really healthy and helpful to say, hey, I'm really scared to talk to you because I'm worried I'll get passed over for a promotion if I tell you about what's going on or about what I need. But I love the work that I do. I think just being really just vulnerable and clear about it.

Where I find with my patients that there's struggle sometimes is if we do a one foot in one foot out deal where we go, okay, cool, so I've got this thing and I think I need some help with it, but I'm not sure what I want or how much I need. And the position that this puts the employer in is that maybe they haven't dealt with an employee that has Chronic Migraine.

Nora McInerny:

Yeah.

Dr. Ryan:

Maybe they've never really offered, and maybe they're awesome, maybe they want to, but they've never done that before.

Nora McInerny:

I think that's how most people are. On my best days, I believe that's how people are. They just don't know and they want to be told. So what are examples of just things that you could ask your supervisor, ask your boss, ask your colleagues for? In that case, when you approach this conversation, here's some things that would really help.

Dr. Ryan:

Yeah, I think the important piece is to explain the impact that Chronic Migraine has on your work. Because if you just say, hey, I want to work from home three days a week, they're going to go, what's going on here? I had this patient who springs to mind. She worked in IT and they worked in a tight space where they've got all their computers they're fixing and they're doing all of these things, and her big trigger was cologne. And so, it was really difficult for her, and so she would be nauseous to the point that she would be leaving over and over again to go vomit while she was being triggered, and it was just too much for her to deal with. And so what she ended up needing was just a separate workspace with a door that she could do her work. She was so happy to have it because it meant she could do her work and she could also avoid that trigger.

Nora McInerny:

In the case where your colleague, your coworker, someone you care about, I guess, in or outside of the workplace, hasn't told you that they have Chronic Migraine, what are some signs to watch out for so you can support them regardless?

Dr. Ryan:

So my patients have shared so many stories of people thinking that they're making their symptoms up, that they're using it as an excuse to get out of work, to get out of chores, even around the house with their spouse, when in reality they're trying to do their best and push through this really debilitating migraine attack. I think depending on your working environment and what you're in, light sensitivity is typically the thing that maybe will stand out a little bit more. So sunglasses for a little bit longer than the front door as they're coming into the office that day. Sound sensitivity. Generally when people are struggling with these symptoms of Chronic Migraine, they're going to be less involved. There's a word for this, we call it presenteeism is what's measured in the workforce, and it's that you're there, but you're not a hundred percent. And I think if you say, hey, I see you, I see you struggling, and just make yourself genuinely available.

Nora McInerny:

One of the reasons that people don't tell the truth about a lot of things in life is this fear of judgment. There's a very real fear that if you tell people, that's all they'll be able to see about you. What are some of the concerns that your patients have shared with you as far as stigmas or misconceptions?

Dr. Ryan:

There's two buckets, personal and professional that people really struggle with when it comes to this in the patients that I take care of. The professional ones we've talked about a little bit already. Am I going to get passed over for promotion? Again, the vast majority of people living with Chronic Migraine are women. They are in the midst of developing their careers and pursuing higher education, high level degrees, and they're concerned about losing scholarship, getting off track with their education, certainly getting off track for the corporate ladder they're climbing, whatever that might be. And if they're struggling already or running up against glass ceilings already, then Chronic Migraine becomes this next glass ceiling that they have to try to break through. So that's the big piece.

On the personal side of things, this is another consideration too, that patients don't necessarily want to share this with their partners or maybe they're dating and they don't really want to let people know about some of this stuff. And the level of anxiety that this drives in their life every day is unreal. And so there's no doubt about the impact that this has 360 in their life. So trying to fight that stigma, I think, is really, really important.

Nora McInerny:

Yeah. You are the best.

Dr. Ryan:

You're the best.

Nora McInerny:

After the break, I will be back with Winnielyn Bautista. So stick around.

Welcome back to The Head Start: Embracing the Journey. Winnielyn first, I love your name. I think you have the cutest name, and thank you so much for joining us.

Winnielyn Bautista:

Thank you.

Nora McInerny:

Winnielyn, what did you have for breakfast today?

Winnielyn Bautista:

Oh, I don't even really eat breakfast. Well, I do normally eat a banana.

Nora McInerny:

The unsung hero of the fruit world. So apparently bananas are very, very good for you. In my house, they're good for being purchased at full price and then sitting untouched until they are just covered in fruit flies, and that's my journey.

Winnielyn Bautista:

I'm guilty of that too, though.

Nora McInerny:

Yeah, it happens fast. It's like avocados. Not ready, not ready. Now it's soup. I want to talk, obviously we're here to talk about Chronic Migraine. How did your Chronic Migraine journey begin?

Winnielyn Bautista:

So my Chronic Migraine journey began in May 2020, and I actually didn't know it was a migraine attack. The only reason why I actually reached out to a doctor this time, it was because of, apparently it was the visual aura, now that I know it's a visual aura. That visual aura was specifically gray, I think it's called scotoma, where it slowly goes from a gray foggy image and it feels part of your visual field. Yeah, that was my first real scare of a migraine attack. And yes, I felt drained, exhausted, but I normalized it so much that I thought it was just normal.

Nora McInerny:

So that's so scary to me. You said it covered part of your visual field. Where are you when this happens that you're just like, well, I guess this is normal?

Winnielyn Bautista:

So it is a long story, but if I can summarize it, I was not really taking good care of myself. I was like, I'm young. I'm invincible. I always bounce back. I don't eat breakfast. I don't sleep well. But then that day I went to meet up with somebody and being a people pleaser that I am, I said, "I got to go." I got to go even though I don't feel well. So I met up with that person. I felt horrible. The weather kept changing, and then I came back home and then I started walking to get some water, and then in the kitchen there was loud noises, and then that's when it started. And then I was like, okay, I need to walk to my room. Is this a stroke? I'm going to check my blood pressure. Yeah.

Nora McInerny:

Wow.

Winnielyn Bautista:

So that's how it started.

Nora McInerny:

How did the diagnosis help and change how you lived?

Winnielyn Bautista:

Well, when I was first diagnosed, I was still very naive on how serious Chronic Migraine was. I'm this 30-something year old young woman, and I'm supposed to be healthy and super active, which I am pretty healthy overall, but it just made me feel like, whoa, I need to really figure this out.

Nora McInerny:

You showed up here today and you are in the midst of a migraine attack. This is not your job. You are doing this as a gift to our community and to this audience. But your job also does require you to show up, to show up physically, even when you're not feeling your best. I want you to tell me about some of those challenges with trying to navigate a very physically demanding job while dealing with Chronic Migraine.

Winnielyn Bautista:

So I feel like with Chronic Migraine, I know every patient is different when they have Chronic Migraine, but for me, I'm noticing more fatigue and also anxiety. But we can do our best by working on our lifestyle, like getting enough sleep. But sometime external factors get in that way. So you got to be compassionate towards yourself. So I try to stay really close contact with all my directors. Since I've been diagnosed, I've worked in two places, two facilities, and I've gotten to talk to a lot of bosses. They keep changing, which is also a challenge among itself. When they keep changing, I'm like, okay, I got to reestablish again. This is what I have, and I'm just always open and honest with them with my limitations. I know I want to see 10 patients, but can only take about six patients per shift, and I just make it known so they are aware. It's not easy to talk about this with your boss, but is it necessary? Absolutely.

Nora McInerny:

I really love that positioning. I want to do my best, and this will also be better for everyone around me, no matter what your job or what your career is. In your field, your profession, what are some of the workplace triggers for your Chronic Migraine?

Winnielyn Bautista:

So light sensitivity is something I've struggled with since I got diagnosed with Chronic Migraine. Like a year in, I really noticed that wow, I cannot take any glares like light or sunshine hitting any glass, especially on a car. But yes, light is always a trigger for me. If I make it into work, it's always a good thing. But navigating throughout the day, I would say for me personally, it's the light. How do I navigate the light?

Nora McInerny:

So if one of the triggers is light sensitivity, how have your workplaces, bosses, co-workers helped you accommodate for those triggers?

Winnielyn Bautista:

Okay, so I am still chugging along and hanging in there. I'm actually working only on the weekends, so I'm still thankful for that. So that already eliminates a lot of external stimuli, but in terms of light sensitivity, they were able to just, right now at one facility, I can see that they're letting me have that documentation station where I can dim the light.

Nora McInerny:

Oh, that's great.

Winnielyn Bautista:

So they just let me have it. Yeah.

Nora McInerny:

Yeah. Yeah. So you've got your own little area where the light is not as bright. So on days like today where you are in it, but you already made plans, how do you create accommodations for yourself? What have you done for yourself to be able to show up today for this recording?

Winnielyn Bautista:

I definitely meditated today. Good self-talk, giving myself self-love that I got this, just being very encouraging. When you're scared or timid, you tense up, but when you're telling yourself, you got this, it'll be okay, you relax. I just try to control my breathing and being more present. I know a lot of us struggle with being present and I have to do that every single day. It could be for my Chronic Migraine, but it's definitely for my mental health. So I guess to answer your question, a lot of meditation, making sure I eat.

Nora McInerny:

I love that. I also love that one of the first things you said was just speaking kindly to yourself, which sounds like such a small thing and is such a big thing. That's such a lovely way to start your day, whether or not you are in the middle of a migraine attack. So I want to talk a little bit about community and the community that you are building. I love what you're talking about, about self-advocacy, about self-compassion and love and support. Tell me about sharing that with your online Chronic Migraine community.

Winnielyn Bautista:

I think I should thank the Chronic Migraine community myself because it's my journey and I'm thankful that they can actually relate. So it goes both ways. They're helping me. I'm helping just to remind them that it's okay to be authentic and to be honest with you, and also just the world.

Nora McInerny:

I love that. You get this Chronic Migraine diagnosis and like you said, you feel young, you feel invincible. What does this diagnosis do to your sense of self or your idea of who you are?

Winnielyn Bautista:

To be completely honest, it made me sad. And I am not a sad person. I know probably it's a coping skill for me to laugh and smile, which I think is a healthy coping skill, but it definitely made me talk to myself. I had to sit down with myself and try to reevaluate like, hey, how are we going to live our life without being scared? Because like I said, it impacts your life. Even though I don't look like I'm sick, it's an invisible disease. It affects me even on my good days. So I really have to sit down with myself and say, hey, what makes you happy? Let's focus on that. That's not focus on trying to be a superwoman and have everybody understand your situation, but also redefining yourself too with a chronic disease.

Nora McInerny:

Yeah. That was beautifully put. Is there a message you would like to leave our audience with?

Winnielyn Bautista:

Okay. The message I want to leave your listeners right now is to keep going. I understand every morning, every day you can feel so defeated without knowing what the day can bring, but keep going. I'm here with you. I understand you. Just keep going.

Nora McInerny:

You are so wonderful. Do people just tell you that all day?

Winnielyn Bautista:

I surprise myself sometimes.

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.