Go ahead and press pause on your FOMO. For anyone who struggles to socialize or keep plans, this episode is for you. Kat and Skye get real about how migraine affects their friendships, share tips for navigating holidays, and warm their hands by the absolute dumpster fire that is canceling plans when you live with an invisible chronic illness.
You can also listen on our Spotify for Podcasters page and on Apple Podcasts.
Additional Reading:
16 Reasons a Person With Chronic Illness May Cancel Plans
When Chronic Pain Comes Between Me and the People I Love
Episode Transcript:
Skye Gailing
Welcome to Health and (un)Wellness.
Kat Harrison
A podcast brought to you by The Mighty, where we put the human back in health. I’m Kat.
Skye Gailing
And I’m Skye, and we are your hosts for this season, Mighty With Migraine.
Kat Harrison
Between the two of us, our heads have over 33 years of experience being a pain in our brains.
Skye Gailing
Yours too? Let’s be friends who wear sunglasses inside.
Kat Harrison
Now on to today’s episode where we’ll be discussing having — or not having — a social life with migraine. Hello, Skye! We meet again.
Skye Gailing
We meet again. Here we are… socializing!
Kat Harrison
Woo! You know, pretty sure that us recording this podcast is what my socializing of the week is going to be.
Skye Gailing
Absolutely, same here. Yeah, I don’t think I have energy to even think about being social in any other way.
Kat Harrison
Not at all. And if you’re listening to this podcast thinking, “Why is someone with a migraine disorder doing an episode about socializing?” It’s because we want you to know that you’re not alone if it’s really, really hard. And if you’re able to have a robust social life with migraine, #SendUsAllOfYourTips.
Skye Gailing
Please do, I need to learn.
Kat Harrison
[laughter] So we wanted to cover a lot of things today. But I feel like we should just kick it off really informally. And I would love to know, Skye, just your past history with having friendships while also living with migraine.
Skye Gailing
Well, because my relationship with migraine started when I was 13 and I was like the snotty teenager who wanted to hang out with my friends all the time, every weekend — slumber parties always. I feel like I used to care a lot less about my well-being or about the comeuppance I would get from migraine after I would push myself to do something. Or when I would force myself to keep up with my peers, I would come to regret it because of how awful, you know, socializing even at that age was with migraine. But I guess, fast forward 13 years and now it’s hard because I think a lot of my current friendships are long distance.
Kat Harrison
That’s super hard.
Skye Gailing
Yeah, like we both went to school a ways away from where we’re from and where we live now. It’s hard when, you know, all your friends end up staying in the city where you went to school, and they all have their careers going and they’re all doing “normal 20-something-year-old things” — but that’s a different topic for a different time. So, long-distance relationships of any kind are very difficult. But then you throw in migraine or another chronic health condition, and it can be especially challenging. Like my friends and I really love to play video games together, but with migraine my light sensitivity goes through the roof and I absolutely cannot deal with fast-moving graphics of any kind.
Kat Harrison
Nope.
Skye Gailing
When I have a migraine, I’m still looking for a way — if anybody knows a way to play Civilization Six in a migraine-friendly way, let me know.
Kat Harrison
I don’t even know what that is.
Skye Gailing
Oh, it’s for the history nerds, baby. [Kat laughs.] But yeah, it’s hard even connecting remotely with my friends. I can’t even imagine if I were in the same area that I’m trying to go out in person with them. I don’t think I could. I definitely couldn’t keep up with that.
Kat Harrison
So that is what I wrestle with, right? Some of my friends do live very far away. And almost, in a way for me, those friendships are slightly easier to keep up with. Because you don’t have the pressure of like, “Well, you’re going out this weekend?”. But I feel like when we talk about this, there are two different camps. It’s, one, how different my life looks like with migraine; and then the logistical and emotional challenges that migraine brings. So whether or not I’m able to go somewhere versus “Wow, your life looks way different.” For me, you know, I’m a little bit older than you, Skye. All of my close friends have 2+ kids. And I love my friends and I’m so, so happy [for them]. I know for a lot of them, being a parent was one of their dreams. But it’s really hard for me when that is not something that I’m able to really pursue. And it’s not that there’s animosity in my friendships. It’s not like there’s any toxicity. No comments have ever been made. But I can’t help but feel a little bit on the outside looking in. I think it’s hard. You know, one, they don’t have a lot of time, especially when their kids are young. You know, maybe that will change one day when they grow up. But I just think they look at my life and they go, “That is drastically different from where I’m at.” And I just think that part of life is kind of… there is some distancing that happens — even if it slowly fades away.
Skye Gailing
It’s so hard and it often feels impossible not to compare yourself to your friends in general. I feel like this past weekend even I saw 1,000,001 pictures of wedding photos.
Kat Harrison
Oh yeah.
Skye Gailing
I saw friends’ pregnancy announcements. It feels like everyone and their mother is getting a master’s degree and I’m a twice grad school dropout. So I’m like, “Oh, this is great for me. Love that. I’m not jealous at all.” And like you said, super happy for everybody, but I can’t help but think about how different our paths of existence are.
Kat Harrison
I think the other thing I struggle with, Skye, is that anytime someone checks in with me… So, one thing that’s also just like kind of a thing about me is that talking on the phone is so difficult for me. It automatically triggers a migraine, even if I’m on speaker phone for some reason. I feel like maybe I use all of my spoons or energy being on Zoom throughout the day for work. My partner’s really the only person that calls me and our conversations are like two minutes to talk about dinner. They’re never like long, involved conversations. But I feel like whenever people check in with me on text, and they’re like, “How ya doing?” I don’t ever feel like I have anything fun to say. Occasionally I have an update, but it’s usually like, “I’m not feeling very great.” And I hate being that friend. It really sucks.
Skye Gailing
I feel like you especially, you’re such an empathetic human being that I can’t imagine how hard it is when you’re like, “Oh, well I want other people to feel OK.”
Kat Harrison
Yep.
Skye Gailing
Like not wanting to bring down the mood or whatever.
Kat Harrison
Exactly. And sometimes I have to remind myself that it’s OK to give the hard updates. And something I find actually is that sometimes when I give a hard update, it gives them permission and provides a space for them to provide a hard update back. I see that on The Mighty all the time. I call it the “authenticity exchange.”
Skye Gailing
I love that term.
Kat Harrison
One person shares something vulnerable and another person feels like the ability to do it. And the same thing happens I think outside The Mighty as well, especially for people who don’t have a lot of places to be vulnerable in their life. Another thing, Skye, and this is such a hot topic especially in the chronic illness world — but honestly, even in the mental illness world and disability world — is canceling plans. It’s a big one.
Skye Gailing
I love when other people cancel plans.
Kat Harrison
It’s like the best ever.
Skye Gailing
I hate doing it myself.
Kat Harrison
There are so many memes that are like, I don’t even know, it’s like a person perched on a bed who gets a text message that’s like, “I’m so sorry, I can’t come tonight.” And the other person’s celebrating, putting on their sweatpants, grabbing a pint of ice cream. I feel like people feel like that, even if they don’t have a health condition.
Skye Gailing
I like to think that too. Yeah, because I’ve definitely canceled plans both for like depression reasons but also for migraine or other chronic illness reasons. It doesn’t feel great. But it’s great when other people cancel plans. Or it’s also great, like you said, when you open up about it, and you’re like, “Hey, I can’t make it today.” Maybe that invites that other person to be more authentic, be more vulnerable.
Kat Harrison
We asked our community how often they cancel plans and I want you to be honest with me and tell me what category you’re in. So, the five categories are: “never, I’m always able to push through”; “it’s rare, thankfully”; “about 50% of the time”; “I say ‘no’ more than I say ‘yes’”; and “always, what is a social life?” So I’ll go first to practice our authenticity exchange, Skye. I am absolutely in the “I say ‘no’ more than I say ‘yes’” category. Which just happens to be the most popular answer — 36% of Mighties answered that way. What about you?
Skye Gailing
I say I fall into the most popular answer on our site as well. I definitely say “no” more than I say “yes.” Even yesterday, a friend was like, “Hey, do you want to talk on the phone?” And I said, “Absolutely not on a weekday. Maybe this weekend? We’ll see what’s up. Probably not, though.”
Kat Harrison
How did they respond? That’s my first question.
Skye Gailing
So it’s my ex, but we are best friends. Because of course, you know, you spend so many years getting to know every single thing about a person. It’s hard not to be best friends. He gets it now. And I think now that I don’t feel pressure to impress him, and I’m like, “Listen, here’s everything that’s going on. My body hurts so much and Saturdays are the worst days.” I think that did invite him to be more honest with how he’s feeling too. So now, our friendship is really great because I can say, “Hey, these are my terrible migraine days. Who knows what’s gonna happen.” And he’s like, “OK, we’ll play it by ear.” Which I appreciate.
Kat Harrison
Let’s just take a second to talk about how much we hate Saturdays.
Skye Gailing
Ugh.
Kat Harrison
They’re the worst day of the week, in my opinion. So I’m one of those like, you know, maybe odd ducks who absolutely loves Mondays. It has a little bit to do with the work week, but for me it’s when I have the least amount of symptoms. Probably when I’m feeling my best. I never feel especially groggy because each day as the week continues — especially once I have a lot of structure during the week — by the end of Friday, I am just like a shell of a human being, not myself. Saturday, I wake up. Hate the world. I have the worst letdown migraine. I can’t even function. I can’t even spell my name. They’re the worst.
Skye Gailing
And I love that you said “the letdown migraine.” I think that’s the phrase we need to normalize is that after, you know, the adrenaline rush of the week, after you get done all the things you’ve been focusing on… that crash. When now your body says, “Let me catch up with everything you forced yourself to do.”
Kat Harrison
Yeah, it’s something. How do you feel emotionally, Skye, when you cancel plans? What does it feel like?
Skye Gailing
I feel like a little piece of garbage. [Kat laughs.] I feel so much guilt over most things in my life — I don’t know if it’s just like a byproduct of being raised Catholic and Jewish, I think that’s just part of the territory. No, but like, I do feel so much guilt when I cancel plans and especially if it’s like somebody I haven’t talked to in a while. The worst is if I’m the one who initiated the plan making — that normally doesn’t happen, but if it does, I feel especially awful if I’m the one to say like “just kidding.”
Kat Harrison
Those are the worst. I definitely have felt that before. I feel kind of past my guilty stage in life, or at least right now. I feel like my two biggest things that I feel is, one, anger. I feel like I’m in my rage era and I really don’t like it and I want to get out of it. But mostly, when I have to say “no,” I think I just feel so angry that this is my life. So frustrated that I haven’t made as much progress as I’ve wanted to in my treatment journey. And just the very like, “WTF, why is this what I’m dealing with?” The other one being absolute emotional numbness, just like, “of course, I said no.” I have no feelings. Don’t feel great. Don’t feel bad. Just absolutely no feeling whatsoever. And I don’t like that either.
Skye Gailing
No, sometimes it feels like canceling plans just kind of becomes routine. It’s like, “Oh, I take my migraine med, that’s a routine.” I cancel plans because of migraine? Also a routine. It doesn’t feel great.
Kat Harrison
Let’s take a quick break to change our shades and then get back at it.
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Skye Gailing
…aaaand, we’re back!
Kat Harrison
One thing we haven’t talked about, and that I really want to make sure we get to, is why we cancel plans. Because I feel like the biggest misconception — and it’s not a misconception, I guess — is that the only reason that people with migraine cancel plans is because in that minute, they’re in a really bad attack. But that’s not true, in my experience.
Skye Gailing
So many reasons.
Kat Harrison
Tell me some of them.
Skye Gailing
Oh, yeah, the attack doesn’t even have to be like, at the forefront of your mind or it doesn’t have to be happening. Like you said, like, I know I’ve canceled plans — and we talk about this a lot — we cancel plans to prevent an attack from happening. Or like, I don’t know how I ended up with so many friends who like the outdoors (well, I also love the outdoors), but it’s not friendly to me. I haven’t gone on a walk of any kind because I’m like, “well no, that’s going to trigger an attack.” If there’s too much stimulus, if there’s too much of whatever going on in some place, I know that it’ll cause an attack. So I got to cancel that plan.
Kat Harrison
Another thing that — and we’ve talked about the four stages of migraine — the very obvious is like, “I am brutally in the midst of a migraine right now. Can’t go.” Then there are the two bookends. So the first bookend being the prodrome, which is like, “I think I have a migraine coming on, I’m experiencing symptoms. If I go to this thing, if I’m social, I know that I’m not going to like myself for probably 72 hours.” And then there’s the migraine hangover, the postdrome, where it’s like, “I just got out of an attack. I can’t remember my name. I don’t have an appetite. I can’t keep my eyes open.” So migraine especially, like I feel like all chronic illnesses affect this, but migraine in particular is very tricky. Because the “flares” can be long, they can be short, and they can be different for everyone.
Skye Gailing
Yeah, and then you can think you have a handle on your individual experience of migraine and then all of a sudden it changes. What a world!
Kat Harrison
What?
Skye Gailing
What?
Kat Harrison
Bodies are weird!
Skye Gailing
Bodies are weird and it’s hard to explain to other people when they’re like, “Oh, well you did this and you were fine, like two months ago,” And it’s like, “Well, everything’s changed since then. Don’t know what to tell you!”
Kat Harrison
Ugh. I just want to say for anyone who’s listening who loves someone with migraine, keep inviting them unless they’ve given you explicit instructions to stop inviting them. But I can’t tell you how much it means to me when someone just continually tells me like, “Hey, we’re going out again.” Or, “We’re doing something. Do you want to come?” And even if I say “no” 98% of the time, I just think it’s a good reminder that they’re still thinking of me. And it kind of opens up an opportunity for us to have a small conversation, even if I’m not able to go. I’ve always really appreciated people who do that.
Skye Gailing
Yeah, keep sending me invitations to things, people. One, I love getting snail mail too. I know Kat does too.
Kat Harrison
Snail mail for life.
Skye Gailing
Yeah, I also like being invited to things without that expectation that I have to say “yes.” And I do feel that way with my closest friends, I know that they’re inviting me because they genuinely want me there. But they will also understand if I can’t do it, or I can’t be there. And that’s really sweet too.
Kat Harrison
It is, it makes me feel very seen, especially with a condition that is absolutely invisible for the most part. So we asked our community some things that we would love people to say if we cancel plans. I found the responses to be really, really thoughtful. I’ll just share a couple of mine: “I know texting is easier for you. Let’s chat that way if you’re feeling up to it.” Always really love it when people acknowledge it. “I care about you. And I know this sucks.” I think whenever someone acknowledges that, like, this is a hard decision. I’m doing what’s best for me. And that’s the most important. It just relieves so much of that guilt and bad feelings.
Skye Gailing
No, that’s so sweet. Yeah, I really like one of our Mighty community members who responded to that question and said that they would like to hear “I’m glad you’re taking care of yourself. I’m always here for you.” And it’s just a great summary. Ugh, I love that sentiment. That’s definitely what I would want to hear when I cancel plans.
Kat Harrison
Absolutely. I really like that. And, so, talking about perhaps situations where people are not as forgiving… there’s this really fun topic called holidays, Skye.
Skye Gailing
I saw it coming up on the episode outline and I was like, “Oh, it’s a doozy!”
Kat Harrison
I just figured this was the episode, I think, to talk about socializing.
Skye Gailing
Oh yeah, absolutely.
Kat Harrison
And to talk about holidays, because they’re so tough. And it’s usually when a lot of family dynamics come out. To be honest, I don’t know if this is true for you, the only real barriers that I have with friendships and holidays is when people are in town that are not normally in town, and they only have that very small window around Thanksgiving to get together. But I’m already spending all of my spoons going to my family gatherings that then I cannot go to my friendship gatherings. I really always hate that. But this is where extended family comes into the picture, and that can be real hard.
Skye Gailing
It can, yeah, these are people you don’t see all the time. Or maybe you don’t have that kind of relationship where you can be like, “Hey, I’m feeling awful.” And like, they might not respond in the kindest way. Definitely have had that happen.
Kat Harrison
I feel like this is where unsolicited advice…
Skye Gailing
Oh my gosh.
Kat Harrison
…from your great aunt comes into play, where it’s like, “Have you tried celery juice?” And it’s like, “Hahaha. No.”
Skye Gailing
I have some family, some extended family members, who like their answer for everything is, “drink some homemade wine or something.” And I absolutely don’t do that.
Kat Harrison
When is homemade wine ever the answer? But OK, love it.
Skye Gailing
I mean, in their defense, I haven’t tried it to see if it works. So who knows? I could be missing out.
Kat Harrison
Skye’s family member, if you’re listening… hit me up, let me know. But I’m curious, what could make holidays or even any kind of gathering more migraine-friendly? What would be your tips, Skye?
Skye Gailing
Something that’s really benefited my family and me and my mom who also lives with migraine, we have found that you don’t have to celebrate the holiday on the exact date the calendar tells you to celebrate it.
Kat Harrison
That is so good.
Skye Gailing
When I was in middle school, there was one year we celebrated Thanksgiving on a different day so we could celebrate it with my grandmother who was in a nursing home. And like, yeah, who cares? You know, celebrate it when it works for you and your loved ones. It’s an easy accommodation to make, especially if you’re working all day and a holiday that you and your family celebrate is on a weekday — just move it if you can, maybe, if it’s a possibility.
Kat Harrison
A lot of people without health conditions, I would say, feel the same thing. I feel like every time the winter holidays are over, I see so many posts on social media or people texting me being like, “I didn’t even get to relax because we crammed so many things into a one-week period.” I think we would all benefit from spaced out holidays.
Skye Gailing
Yeah, just spread it out.
Kat Harrison
Spread it out. And in fact, that actually is one of my biggest tips. So I have a rule and I really, really stick with it, which is that I do not go to more than one gathering in the day. Absolutely not, cannot do it. And I usually will not go to gatherings that are back to back, two days in a row. I always need rest. Scheduling rest before and after so I can recover, to likely be able to go to a second one. But since I followed those rules, guess what? I have not had to spend weeks in bed recovering afterward. It’s almost like it worked.
Skye Gailing
Yeah, that’s such, such good advice. You can also change not just the date you celebrate the holiday, if that’s a possibility for you, but you can also change holiday traditions. Not to get too serious and religious, but there are holidays that have more, I guess, intense physical requirements. There is some expectation of certain physical traditions. Like Yom Kippur, for example, is one I celebrate. And in theory, you’re supposed to be fasting all day as part of the observance and spending the day in prayer and at temple. And like, that’s not feasible for me at least. And I know that some of my fellow Jewish spoonies have also had trouble with it. There are always a different set of rules or different ways you can have those observances that are healthy for you. And that’s also a good time to have a chat with maybe your Rabbi or other religious leader if you have questions. Say like, “Hey, how can I observe this? I want to, but I can’t do it in the same way as other people.” So basically, what I’m trying to say is, you can make these days work for you and still be part of a community and a celebration that’s larger than yourself. It’s possible.
Kat Harrison
I feel like part of that is all the stuff that goes into socializing that people just don’t see. And for me, the biggest, number-one thing is that people do not see all the things I have to sacrifice in order to make it happen. For instance, in a couple of weeks, I have a family gathering that I really, really, really want to go to because I’ve missed out on the last few, but I have canceled all of my plans, or supposed plans, for the weekend before in preparation for being able to do something the weekend after. I won’t allow myself to clean the house a few days prior to going. They’re just all these things that are very mundane and very boring, but I just know these are going to be the best decisions for me to be able to actually enjoy myself. What do you feel like other people don’t see when it comes to socializing?
Skye Gailing
Yeah, well, like you said, just because somebody wants to make plans or there’s a holiday… Health conditions? They’re year round. They don’t take a day off. You can’t just conveniently like, “Oh, let me take off my migraine hat. I don’t have that today.” Great. Like, that’s not how that works. Everything, like you said, is a calculated decision. And we do have to sacrifice things. Like recently it was my sister’s birthday and she was like, “Skye, you cannot go for a walk because then you’ll be too tired to celebrate my birthday.” And I was like, “What? That’s so mean.” She’s absolutely right. She helped me make the right call.
Kat Harrison
I love that she knows that. And I love that she recognized it.
Skye Gailing
Wish she said it more nicely. But yeah no, she’s a good sister. When it comes down to it, she’s a good sister.
Kat Harrison
That’s fair, we can always work on tone. But I do like to just recognize that something like a walk, which wouldn’t necessarily ruin other people energy-wise would actually ruin — not ruin you, that’s very dramatic —but wear you out.
Skye Gailing
Yeah. And I think it comes down to something that most of us, I think it’s safe to say, in the chronic illness community are familiar with: The Spoon Theory by Christine M. And that’s when you have a certain amount of spoons or like energy units for a day. And certain tasks take up certain numbers of spoons. For instance, I knew we were recording this podcast today. I didn’t take a shower last night because I knew it would take up too many of my spoons and I wanted to come into today with as much, I guess, wherewithal as possible. So five minutes before we hopped on this call, I did a bunch of dry shampoo. Can’t even tell.
Kat Harrison
Excellent. To prep for today’s podcast recording with my spoons, I prepped dinner last night for tonight. So all I have to do is pull it out of the fridge and put it in the oven. And then whatever side stuff I want to do. So it’s funny, but also very realistic that both of us had to make accommodations in order to be able to just do something like record a podcast, which other people may not actually see as something social, or something that takes a lot of energy. I’m curious, Skye, do you have any other tips for how to make plans accessible?
Skye Gailing
Yeah, so it’s probably annoying for Kat to hear this because it’s like all I ever want to talk about, but so I went to LA for the first time back in February. It was my first time, I went by myself… not going wasn’t an option. I knew I had to make the trip as accessible as I could. So I made sure to find a place that was near two urgent care locations. And I even talked to one of our friends in the area who had experience going to one of those and I was like, “Hey, if I had to go to one of the urgent cares in this area, what do you think?” And so I got feedback from people who knew the area. And I made sure to stay near a branch of the pharmacy that I also use at home.
Kat Harrison
So smart.
Skye Gailing
Yeah, and I was like, “OK, if I need an emergency supply of XYZ medication, I know I can go there. I know I have coupons. And I’m very familiar with that whole system.” What tips do you have?
Kat Harrison
Oh, I feel like I’ve already said it, but just want to reiterate the importance of planning for rest. I would say for anyone that’s trying to plan some type of getaway or vacation, even if it’s not far, just try not to stack too many things in a row. The benefit of living with the condition for a very long time is that you learn from your mistakes, and I know what it feels like to push myself so intensely that I just spend so so long recovering. And most of the time, unless it’s like a once-in-a-lifetime opportunity, that recovery is usually not worth it to that extent.
I think for me, the way I kind of think of it, sometimes it’s like physical spoons versus emotional spoons. And sometimes I just really, really have to push myself physically in order to mend my soul a bit, which is why I’m so intent on going to this gathering, because I know I’m going to feel so loved afterward. And I just really, really need that right now. So I think just knowing when to push yourself, when to pull back, when to plan rest. So important. Skye, I could just talk to you all day. But thanks for being a little bit open about not having a social life, which I can…
Skye Gailing
Right back at you.
Kat Harrison
…really resonates.
Skye Gailing
Oh, my goodness. Thank you, Kat, and thank you out there everyone listening. Thank you so much for joining us today. We hope you laughed and learned in equal measure and that your head is kind to you today.
Kat Harrison
Join us on our next episode, where we’ll be exchanging tips, hacks, and tools for living with migraine with three very special Mighty guests.
Skye Gailing
No pressure to bring your best self, just your authentic one.
Kat Harrison
Because we’re here for you in sickness and in health. Download The Mighty app for more.