True or false: Empathy and compassion are muscles that can be strengthened. In this episode, Kat and Skye share their thoughts on this topic and some other dos and don’ts when it comes to supporting someone with migraine. (Hint: We don’t want you to fix us, we just want you to sit with us in our discomfort.) Kat gets emotional on the mic about her family’s adoption of spoon theory over the years, and Skye explores the helplessness loved ones can feel when they watch someone they care about deal with chronic pain. Be sure to stick with us until the end, when the co-hosts’ very own loved ones impart their advice for other caregivers — because you deserve support, too.
You can also listen on our Spotify for Podcasters page and on Apple Podcasts.
Additional Reading:
52 Practical Ways to Be a Migraine Ally in Action
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 onto today’s episode, where we’ll be discussing the do’s and don’ts of supporting someone with migraine. Hello, Skye.
Skye Gailing
Hello, Kat. We are here talking about caregiving, support, all things migraine.
Kat Harrison
Supporting each other.
Skye Gailing
Supporting each other! I like that. That’s a good point. Speaking of support, let’s get things rolling this episode with a question we actually posed to our community. Who do you turn to for support during a migraine? And the number one answer? Pets.
Kat Harrison
Ope. I knew it. I knew it.
Skye Gailing
We know pets are very important for support. I mean, we both have dogs we love to pieces and are there for us.
Kat Harrison
But they’re also more reliable than humans. They have the capacity to give unconditional love. And I feel like that is probably one of the most frustrating parts. If you’re just tuning into this episode and you’re like, “I feel like I don’t have anyone for support,” I would say that you’re not alone, that it’s a pretty common experience. It’s unfortunate. And so, Skye and I’s hope today is just to be able to demystify what would be great for supporting someone, our experiences with being supported. We also interviewed a few of our family members and we’re going to share the answers later which is really fun. But Skye, I’m curious. In your life, who do you get the most support from?
Skye Gailing
Well, aside from my sweet, fluffy, baby, Pip, who gives me a lot of support but also likes to bark every time I have a migraine attack –
Kat Harrison
That’s fun.
Skye Gailing
Oh, it’s so great. I get a lot of support from my immediate family and also my therapist. I’ve talked a countless number of times before on this podcast about how important my weekly therapy sessions are. And even today — this morning — in my session, we talked a lot about migraine, and specifically, the uncontrollable trigger of weather, the more controllable trigger of stress. So I’d say, therapist? Absolutely crucial. Who do you turn to for support when you’re in the midst of dealing with migraine?
Kat Harrison
I definitely have three core people. I have my partner of 12 years who I live with, and he is by far the one who sees me through it all, because that’s what happens when you live with someone and you care about them. But my parents also don’t live far from me. They’re in some ways a very go-to caregiver for me. They have a little bit more time on their hands compared to my partner. So the three of them and then Doxon — got to give a shout out to my rescue dog. I adopted him during the biggest depressive episode of my life, which was triggered by my physical health condition, and I’ve never looked back. He is really key, and to all those pet lovers out there, give them pets and belly rubs for us today.
Skye Gailing
I think it’s important to mention: pets also do not give unsolicited advice, and that’s key. Kat, I would love to dive into the caregiving don’ts when caregiving can go wrong.
Kat Harrison
I feel like for me, one thing that I struggle deeply with, or have struggled deeply with in the past, is when people just simply don’t believe me. Where I am either communicating with words, or during a migraine it’s very difficult to communicate with words sometimes, but if my body language is giving off a very, “I’m in discomfort,” “I am not having a good time,” and then I’m around someone who’s like, “But are you sure?” “Are you sure you have a migraine?” And it’s like, I don’t need to convince you of an experience that I’m having that you’re not believing me [about]. So I feel like that is something that I’ve struggled with in the past that can be really, really hard. What about you?
Skye Gailing
Oh, that is number one: when people are dismissive. They don’t even have to directly say, “I don’t believe you.” You can tell. You and I have been in the game for a long time. We know when someone doesn’t believe us, doesn’t trust our lived experience. And you can also — I think this is a huge red flag — when someone calls a migraine attack, or the condition of migraine, a headache.
Kat Harrison
Oh yeah. The fav. It is a red flag and it shows a gross misunderstanding of the disease from a, you know, a societal level. We’ve talked about that on and on and on this season, but it minimizes the experience and I can imagine for people that live with migraine and don’t experience head pain, I can only imagine the gigantic leaps that they have to make with their loved ones or their employers to be like, “What, you don’t have a headache?” “That doesn’t mean you have migraine.”
Skye Gailing
Absolutely.
Kat Harrison
Which adds a whole other level of misunderstanding, which has gotta be really tough.
Skye Gailing
Yeah, it must be so frustrating when you’re dealing with silent migraine to have to say, “No, you know that thing that you think is just head pain?” Uh-uh.
Kat Harrison
It’s a lot of other things.
Skye Gailing
Oh, yeah. And then along with those misconceptions, I’m sure you’ve also experienced this, but people love to say, “Oh, just drink some water, and you’ll feel better.” That doesn’t even work for a regular headache!
Kat Harrison
It doesn’t, and it was really interesting when I was having the conversation. So you know, I interviewed my parents, and then I interviewed my partner, Mike. In talking with them, it was really interesting to hear their perspective of what it’s like to watch someone you love feel helpless and what that does to them. And I think that sometimes what comes across to us, Skye, as, “Why are you giving me suggestions? Why are you trying to anticipate my needs?” It does come from a place, sometimes, of love, of care. It’s something that they have control over. I think it’s really hard for other people to sit with the pain. They want to jump into action. So there’s a little bit of both sides there. It’s tough.
Skye Gailing
Yeah, I mean, as I’ve mentioned before, I’m still at that stage on my chronic illness journey where I’m like, “Eh! They’re just judging me!” or “They don’t get it.” But yeah, after speaking with my dad about his experience seeing me with migraine, he shared a lot of that, where it’s so frustrating for him to have to see me in pain and know that he can do nothing about it.
Kat Harrison
Mhm.
Skye Gailing
Accepting that he can’t “fix the problem” has been the hardest part for him, I think.
Kat Harrison
Yep. I would say that that is pretty consistent with what my loved ones have said. My dad actually made a really good point — and this does not surprise me at all — he said that changing plans and having to be flexible is really, really tough for people, especially my parents, who are “ultra-planners.” That is a self-quoted word from my father. And I would agree, right? They have gotten so much better over time, just being flexible and understanding that family gatherings may look different, but I know it’s hard for them. I mean, I don’t even like when my plans get thwarted by migraine. I like to know what I’m doing and where I’m supposed to be. When a migraine comes, it’s like, “Ehhh?” So my dad had said that, and then Mike actually made a really good point, which is that the hardest part for him is living in two different timelines. The one timeline is: here is the world! Here are all your responsibilities! And then my health, which is running on a completely different timeline, but I don’t have a lot of control over. Sometimes when they intersect — and something’s going wrong in the personal life and something’s going wrong in the health life — it can be overwhelming. I feel the overwhelming, but I’m sure it’s even more so for him as the caregiver.
Skye Gailing
Oh, I think yes, that overwhelming sense. My sister spoke a lot about the unpredictability of migraine as a condition. I mean, with any chronic illness, each day looks different. And my sister, Tristan, she kept touching on how she feels like she always has to look out for signs of an attack. To quote her, “If I see a Headache Hat bobbing around, I know I’m gonna have to turn down the TV.” Ever since back in the spring, she took me to three different emergency rooms in three days and was the sole provider of care for me for a 17-day-long migraine attack — it was, you know, the worst I’ve ever felt physically — and since then she, and she admits this, she says that she’s always been on edge and looking out for signs. She doesn’t like that she has no idea how much he can accommodate me. Or as she put it, “Do I just have to turn the TV down or do I have to take you to the hospital?” But she also feels like she has no right to be frustrated. And that’s something I’m trying to —
Kat Harrison
That’s interesting.
Skye Gailing
— like, train out of her, if that makes sense. I’m like, “No, you can be upset. I’m upset by it. Of course, you can be upset.” But she feels like she doesn’t have that right.
Kat Harrison
And that makes sense. Actually, Mike had said something like, “It’s really tough to be consistently compassionate.” Because if you think of sometimes with your own life, you have days where you’re more on edge than others. You have days where you have a ton of patience and then not. But caring for someone with chronic illness? It does require a lot of compassion. And I think it’s something you have to work on. I think that people are definitely born with a certain level of compassion. I like to believe they are, but you become more compassionate the more you’re faced with adversity in a lot of ways. I mean, Mike and I had a very, very long conversation, so I feel for Tristan. I totally get where she’s coming from. That makes a lot of sense to me. But I also like the mention of the ice hat. That makes me happy.
Skye Gailing
Oh, yeah. My dad of course mentioned the Headache Hat as well. He compared me to his Russian grandmother, and I quote, “It’s hard when you look like a pale Russian babushka in your Headache Hat and pajamas.” Thanks, Richard.
Kat Harrison
Richard! Comin’ in with the best pull quote of this episode.
Skye Gailing
It was hard getting him to give serious answers. I think, because it’s been so challenging, he’d rather just make jokes about it. Which… I mean, we’ve talked about how we cope with humor, and he’s the exact same. I was also surprised by my sister saying — speaking of not having control — she is still so mad at one of the ER physicians I saw. She said, “Seeing this doctor call it a headache when you were in 10 out of 10 pain and were looking for relief,” and she said, “As you can see, I still have beef with someone.” Honestly, I think I’ve just become so used to doctors being that awful that I’m like, “Oh, just another one. Can’t stand doctors like that.” But my sister, that was the first time I think she’s seen it. So… like…
Kat Harrison
Right in her face?
Skye Gailing
Exactly. Exactly. That blatant that she’s still infuriated.
Kat Harrison
How does it make you feel when people get riled up on your behalf? Does it make you feel seen? Or does it frustrate you further?
Skye Gailing
I think it makes me feel seen, but also, guilty. In this case, I already felt like a burden having to be taken to all these ERs. My sister was, you know, rushing around. And I mean, she’s my baby sister. We’re only two and a half years apart, but she’s my baby sister, and I’m like, I should be the one taking care of you. It’s hard trying to navigate my role as the older sister while also letting myself be taken care of. But, yeah. I think the hardest part about that, for me, is I want to take away those feelings of anger from her. I don’t want her to have to be preoccupied with that on my behalf. I appreciate the anger so much. It feels very validating, but I don’t want her to have to feel that way, if that makes sense.
Kat Harrison
Let’s take a quick break to change our shades and then get back at it.
Ubrelvy Migraine Mid-Roll
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My hope is that by sharing my migraine story, and the relief I get from Ubrelvy, it can help someone else. Ask your doctor about Ubrelvy, the anytime, anywhere migraine medicine. Find more product information at Ubrelvy.com or call 8444-UBRELVY. Sponsored by AbbVie.
Skye Gailing
And we’re back.
Kat Harrison
Have you always been able to see the caregiver side? Because I will admit, probably in my teens, and some my 20s, I lacked a lot of empathy for the other side of things. I always, admittedly, saw my condition as very tunnel vision, right? Like, “My life is the worst. I’m the person that has to deal with this.” When in all reality, caregivers — and people who support others with migraine specifically — have their own set of worries. Something, Skye, that we talk about a lot is in everyone’s life, at some point, you will encounter a health issue. It might not be chronic. It may always be acute, but you will encounter something. So caregivers are never at their 100% level. Have you always had the empathy for the other side or is it new for you?
Skye Gailing
It’s honestly relatively new for me. I’ve had a hard time, especially in previous romantic relationships. I’ve been like, “What do you mean this person’s frustrated? I’m the one who’s miserable!” It’s taking a long time, and I honestly want to say that over the past year and change, I’ve gotten better, probably from working at The Mighty. I’ve gotten much better at empathizing with the caregiver or saying, “Oh, dang, you’ve got so much going on too,” but it’s hard to balance that empathy with trying not to feel like a burden. It’s hard to sit with both sides.
Kat Harrison
It is. Especially when you’re in debilitating pain and it’s hard to think of anything else outside of that actual experience. As Mike would say… What’d he say? I wrote it down. “When you love the person you just have to work through it even if it sucks.” [I’m] very, very lucky to have that, but it is the truth, right? In a lot of ways, if you sign up for a relationship with someone with health conditions, it’s gonna look different. It’s not going to be rosy. We have this story we love to tell. We’ve had some weird Christmases, in the sense that it always seems like my health at the end of the year is just tapped out. Some kind of crisis always happens. Many, many years ago, we used to go over to my grandma’s house on Christmas afternoon. We spent the morning getting ready, having our lazy morning. We go to Christmas and literally the moment I get there? Overwhelming nausea. I spent 15 minutes in the bathroom and then we left and I had the worst attack ever. So Mike got all dressed up to see my family. We walked in the door. He’s like, I’m pretty sure I hugged your cousin. Then we went home and that really sucked. Right? It sucked for me. It sucked for him. But it just kind of is what it is. It happened, but it’s tough.
Skye Gailing
It is. It is so tough. Speaking of Mike and your super healthy, inter-abled relationship, I think that no questions asked, “I’m taking you home,” kind of thing — there are some caregiving and supporting do’s. You know, we’ve talked about the bad side of caregiving. I would love to shine a light on some good practices from the loved ones and caregivers in our lives. Like I would love to hear about Spoon Theory and your family.
Kat Harrison
Oh! This is like, and I’m really gonna try, I didn’t cry our mental health episode. I’m gonna try really hard not to cry right now. So my family has not only adopted spoon theory, but they have embraced it. There are shirts about spoons in my family. People will say things to me like, “Hey, Kat, do you have the spoons to actually unload the dishwasher right now? Or do you just want to do it later?” Or my parents will be like “I bet you don’t have the spoons to go to the library. I’ll come and pick up your book and drop it off.” And it’s just that little change of language that I am getting really emotional, because I know I’m very, very lucky to have that. I feel guilty because other people don’t have that. But it’s made such a difference in my life and I feel very seen. Yeah, that’s great.
Skye Gailing
Oh, Kat…
Kat Harrison
I’m crying in my microphone, everyone! It happens.
Skye Gailing
I mean the mental health when I cried before we recorded the episode, that was the difference.
Kat Harrison
It was bound to happen. But it’s all happy tears because I’m just so grateful for that and it’s really given me just a lot of grace. I think a lot of times the dishes is the first thing that comes to mind because it’s a visible reminder of what I’m not doing. So I’m in the kitchen. I’m working. I look over at the sink and there are overflowing dishes and in my mind, I’m thinking “I need to do them right now! This is so messy. Who wants to look at this?” And Mike’s sitting here, or if I’m at my parent’s house they’re sitting here, and going, “They’re just dishes. If doing them sets off an attack, why would you do that to yourself?” I think I’m judging myself more than they are. It’s just those little, I don’t know… Does your family have any type of language that you use or ways of working through your migraine, but positively?
Skye Gailing
Well, I think the dishes, that’s the hardest chore for me and that’s the one that I also feel the most guilty about when it’s not done because like you said, you can see it. My dad has actually adopted Spoon Theory for himself and when talking to me. His mind was kind of blown. It’s again, I feel bad that he didn’t have the language before. I mean, even though everything is so stigmatized today, conditions are more accepted than they once were. I feel that he didn’t come up in that kind of environment. He started using spoon theory, specifically around, depression, and he’s like, “What do you mean? I can use this for mental stuff, too?” And I said, “Yes, absolutely!” And it’s really nice that he has set an example of communicating using spoons, like saying, “Oh, I had to spend all morning in bed. Didn’t have the spoons for it.” And so that gives me the freedom to say, “Oh, here’s where my spoons are at today.” It’s been really nice to have that common language.
Kat Harrison
What a difference it makes! And I think that language is so key here. I think my brother is a great example. You know, something that is hard, that is not helpful to someone with migraine, is constantly saying, “Get well soon,” or, “Feel better tomorrow.” As we know with chronic health conditions, that’s just not the case. There are good days and there are better days and there are bad days. We’re never 100% cured or in remission, depending on the condition, and migraine is one of those. We have good times and bad times. So my brother — who is also the best. He’s my younger brother — he will text me and his texts are always some version of “I hope today is 1% better than yesterday,” or, “I hope you haven’t lost your vision today,” or he’ll write me a birthday card and say, “I hope today is a low symptom day or that you’re not in too much pain.” It’s so subtle, but it shows someone with migraine that you understand that it’s chronic, that you understand that it’s something they live with and it’s not a one-time thing. Some people might say, “Why are you acknowledging my health in my birthday card?” But I’m sitting here on my birthday — possibly with a raging migraine attack — being like, this is literally the best thing you could have said to me. It’s funny how language can be incredibly harmful, but it can also be incredibly helpful and I think getting your family or your group of friends, or having a shared language with your co-workers, or your boss, or your therapist, your entire medical team, it really does make a difference
Skye Gailing
Oh, absolutely. We’ve talked about the messages your brother sends and everything before because I love it; it warms my heart to hear that. It also makes me smile knowing that people show you grace and speak to you the way you speak to others and make room for everybody else’s emotions and experiences. I actually wrote a card to somebody recently, and I was like, panicking. I was like, I don’t know what to write in this. This is an awkward situation. I’m uncomfortable, and I’m googling, and then I was like, “What would Kat say?” And I channeled your kindness and your patience and empathy, and I was like, “OK. I got this now.” But yeah, language is so important. I think we’ve talked about trying not to spout toxic positivity and trying to balance. I think your brother’s a great example of this, [of] balancing support while being a little bit positive, but not being toxically positive and saying, “Oh, I hope you’re 100% better,” because that’s not possible. I think that’s really great.
Kat Harrison
The second question we asked our loved ones is, “What’s the best part about loving someone with migraine?” I don’t know why we asked this question, everyone. My dad’s actual response is, “Very odd question!” My mother’s exact response was, “The question is really weird to me.” There’s nothing good about having a migraine so I can see how they interpreted it, but Mike had a good one. He talked to me about the fact that when he was growing up, he didn’t really have a lot of exposure to illness. He didn’t really grow up with anyone with a chronic condition in his family, in school. Granted, I think that things were a lot different 20 years ago. I didn’t talk about my health in school, that’s for sure. Definitely never made it known to anyone and so there are likely people dealing with health issues that you just didn’t see. But he was saying that he grew up in a family where overachieving was kind of the norm, that it was expected that you would hit every benchmark and then further and then it really, once we got together, it really showed him that there are reasons why people don’t necessarily push themselves all the time. That people actually have reasons why they rest, not that you need a reason to rest, but that there was a whole different way of navigating life. And he is talking about kind of building his compassion muscle, which makes me think that it is a muscle, even for me, Skye. I didn’t used to just be able to say things to support people. It’s taken a lot of practice and a lot of that comes with just listening. Listen to the person going through the experience. You can learn a lot, can’t ya?
Skye Gailing
Oh, my goodness. Absolutely! We also asked our loved ones for tips and that was my sister’s biggest tip, was to listen to what the person actually going through it says and let them tell you what they need. I think that’s so important: being listened to. And I’ll say, when I asked my father and sister, “What’s the best part of having a loved one with migraine?” My dad’s first response: “There is none.”
Kat Harrison
Yep.
Skye Gailing
His second response?
Kat Harrison
[Laughing.]
Skye Gailing
I was like, OK, I expected that. His second response was he got to learn so much about something he never wanted to know about. And I was like, OK, he loves learning new things and he’s like, I didn’t want to have to know everything I know about migraine. And then my sister, this answer I thought was absolutely iconic. She said, “Having someone prepped for everything. They have their own pharmacy, and believe you when you’re in pain.”
Kat Harrison
I like that. A lot. My mom also gave suggestions. She was like, “If you have a gathering and the person does decide to come, make it migraine-friendly. Make your house darker. Have ice on hand. Be willing to let them go to another room and don’t give them grief.” Both of my parents talked a lot about get-togethers. It’s hard for them to either see me go to a gathering and get sick or not come because I’m sick, but their whole thing is you got to allow that to happen and you need to not give them grief. I’m glad if nothing else, that people in my life have taken that away because, wow, does it feel good to have someone not berate me for not being able to come to something because of my health. That feels good.
Skye Gailing
No, that’s amazing to hear. My dad said one of his biggest pieces of advice for other caregivers and loved ones was to not be selfish and he said, “You have to have empathy, even if you’re a miserable person.” That was sweet, and he admitted something to me that actually kind of blew my mind, that he only recently learned not to blame the patient or the person living with migraine for not “trying everything.”
Kat Harrison
That’s…
Skye Gailing
Yeah. That was huge because he used to be very… Like, in high school, he made me stop eating peanut butter for a while because he read some weird article about how peanut butter triggers migraine. Which is one of my favorite foods so that was rude.
Kat Harrison
So sad.
Skye Gailing
Yeah! It was miserable. And he used to say every time I’d be in the midst of an attack, he’d be like, “Well, why haven’t you tried this yet? Why haven’t you tried this yet? Why can’t you see this doctor?” And I’m like, “It’s not how any of that works.” I think he’s had that realization only recently but I was really impressed by him willing to admit that to me,
Kat Harrison
Mike, and I’m going to read this directly because I was just like, “Yes. I want to get this on a billboard.” He said, “Living with migraine will look different for each person. Rather than coming at them with things that you think might work, you should listen to what actually works for them. Sometimes when the person is dealing with a lot of pain, they don’t want to become your experiment. It’s not about fixing them. It’s about being with them, even if it’s hard.” And I was like, “Yes. I’ve taught you every thing.”
Skye Gailing
I want that on a poster!
Kat Harrison
I’m just kidding. Just kidding. He came up with that on his own. But that’s it, right? That’s all we want. It’s not about fixing us. Do I want to be fixed? Sure. I would love to live in a world without migraine symptoms, but that’s not what I want from people that are supporting me. In fact, actually, we made a joke, Skye. What do you actually want when you have migraine? What makes you feel good?
Skye Gailing
To be left alone!
Kat Harrison
Just leave me alone. Just don’t be in the room. Don’t be near my couch. Don’t talk to me. Leave me alone. And little do you know, everyone, that is actually a beautiful part of supporting someone. Right?
Skye Gailing
Yeah. Yes.
Kat Harrison
You may not think it, but hovering, hovering is not great.
Skye Gailing
Hovering’s stressful.
Kat Harrison
Sure is. It is really stressful. Let’s see. The last thing that Skye and I want to briefly touch on is for people out there wanting to find support if they feel like they don’t have it or they want more of it. Skye, do you have any tips?
Skye Gailing
Well, I mean, come on over to the Mighty! No, but in all seriousness, it’s really helpful to find an online community, especially with the pandemic going on, and sometimes it’s not feasible to travel to receive support or anything. It’s really nice to connect with others online, especially people who live with migraine as well.
Kat Harrison
It makes such a difference.
Skye Gailing
Such a difference. It’s such a big source of support, even if you’re just both in pain but you know there’s somebody else going through it too. It’s really nice to have that kind of solidarity.
Kat Harrison
It is and there is no one-size-fits-all when it comes to support. One thing that’s been really hard for me to realize in my life is that I would rather have less people supporting me in a healthy way than a lot of people supporting me in a way that’s really toxic because that’s draining. That adds to my symptoms. I don’t got time for that! I gotta protect my energy. I gotta set some boundaries. That’s taken me about a decade to learn and practice but I think that that’s important too. And for anyone who’s like, “I really got no one,” you got Skye and I. We’re out here. We’re supporting you. We’re cheering you on.
Skye Gailing
Absolutely! Absolutely. We’re cheering you on so quietly. There’s no flashing lights to cheer you on.
Kat Harrison
That’d be great. And, to our caregivers out there. First of all, shout out to Skye and I’s families. Thank you so much for answering our questions, and I also just want to say, it’s tough to support someone with a health condition. We know it’s draining. We know you got your own stuff going on. We appreciate you. Thank you.
Skye Gailing
Yes, thank you so much to our caregivers and loved ones out there, and thank you to everyone for listening to this podcast. 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, which just happens to be the season’s last, Skye. We’ll be talking about accepting, and maybe even thriving, with migraine.
Skye Gailing
Well, 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.