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Migraine: The Relationship Third Wheel

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Ah migraine, the most annoying third wheel of all time. It’s a universal truth that migraine affects our relationships in ways both good and bad. In this episode, Kat and Skye get honest about dating — just wait until you hear about Skye’s experiment with dating apps — as well as their connections with family and friends. If you sometimes (read: always) feel like a burden to the people you care about, this one’s for you.

You can also listen on our Spotify for Podcasters page and on Apple Podcasts.

 

Additional Reading:

My Friends Get Real About What It’s Like to Be Friends With My Chronically Ill Self

8 Things I Haven’t Told My Family and Friends About Being Chronically Sick

 

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 the effect migraine has on relationships. Hello, Skye. 

Skye Gailing 

Hello, Kat. 

Kat Harrison  

You know, right before we started recording, I saw you wearing your Headache Hat. How are you feeling?

Skye Gailing  

I don’t know how much cursing we can get up to on the show, but Bo Burnham in his recent special “Inside” — well, recent as of like two years ago — as a summary, he’s like, “Hey, how you feeling out there?” And then he responds, “Oh, I feel like shit.” And so that’s where I’m at right now.

Kat Harrison 

Yep. And for anyone that thought we don’t have lived experience with migraine… we sure do! In fact, the lived experience is alive and well as we record this. But I’m really excited — maybe excited, but also a little sad, I think, to be getting into today’s topic. I feel like relationships, whether they’re platonic or romantic… you can’t talk about having a physical illness without talking about how it affects the time you spend with other people. So, where should we start, Skye?

Skye Gailing  

I guess we can talk about how migraine, like other forms of chronic illness, affects relationships. I know, fortunately/unfortunately, you and I have a lot of experience when it comes to that.

Kat Harrison 

Well, I think a good place to start, Skye, is to think about the fact that migraine has both positive and negative effects on relationships. I do think I never want to just talk about the negative, I think talking about the positive… and I’ll just kind of start with that. For me, I’ve really been able to weed out the relationships in my life, based on how people treat me about my health — whether or not they make me feel guilty. But I think that that’s a rarity. 

Skye Gailing 

I mean, of course my gut reaction is to be like, it’s only negative. Like every relationship I’ve ever had, any kind, has been negatively affected by my health, which, for the most part is true, but I am starting to see more of the… I am still nervous to call it like “a positive” — to go fully in that camp as well. But I do see like, when I connect with other people who also have health conditions of any kind, mental or physical, I do find those connections to be deeper, richer, like we’re able to be closer and have this level of understanding with each other that doesn’t come with, you know, just a random acquaintance who’s like, “Oh, I don’t have chronic pain.”

Kat Harrison
Think about our friendship, Skye.

Skye Gailing
I was about to say, the first positive relationship that comes to mind is you and me, or you know, our co-workers here at The Mighty, who I’m so excited to say I’ve become friends with over the past, you know, year and change since I started here. And a lot of its connection through our health.

Kat Harrison 

And I think that just kind of gets the BS away. Yes, I always have to remind myself that we don’t work in a common workplace in the sense that we don’t have to regularly fill a conversation with the weather. When we talk about the weather, it’s about its effect on our health. I was actually just looking at the statistics that we brought in from when we had asked our community — and when we asked it within The Mighty, 50% of people said that they have lost relationships because of migraine. And then 33% said that they had lost but also gained relationships. And I think that that feels about right to me. I don’t think I’m surprised. Because when I hear about any kind of condition in general, it’s naturally going to put a strain on it. I think it makes a lot of sense. We’re going to have a whole social life episode this season so I don’t want to dive too, too much into it, but hey, health makes you want to cancel plans. Or have to cancel plans. That probably doesn’t feel good to other people. It doesn’t feel good to us.

Skye Gailing
So I will say, those stats you referenced from our site, pretty similar results across Instagram and YouTube when we ask people about how migraine affected their relationships with others — about the same percentages. And I definitely I’m still in that… ah, I still feel like migraine has only brought negatives except for my friendship with Kat. Like, right now that’s kind of my perspective, yeah.

Kat Harrison

Let’s start with, I think, romantic and intimate relationships. There’s two avenues there, right? There is the dating avenue, whether you are trying to find someone that you want to spend your time with or you’ve kind of been in a relationship for a while. And then there’s if you choose to get married, or commit yourself… like there’s that. What does it look like for migraine to be there for a very, very long time? So, Skye, I’d love to talk about dating with you because I just know that there’s a story in there.

Skye Gailing  

Oh, oh, buddy. Yeah, so, I think it was back over the summer I kind of got bored. Or I was like, you know what it would be fun to write about? Dating apps. It wasn’t as fun as I thought it would be, to be honest. I don’t know why I thought it’d be fun at all. But I signed up for, I think it was Tinder, Bumble and Hinge, and on each of those websites I would present myself at like different levels of sick, if that makes sense. 

Kat Harrison  

That makes a lot of sense. 

Skye Gailing  

Yeah, one of the dating apps, I was like, “Oh, I’m presenting myself, like I can pass as able-bodied really easily.” And Tinder was a mix of like, a picture with my cane, and then a picture of me doing some activity. And then Hinge was like, here’s me when I was in the hospital for this injury. And then Bumble was the control, and it was just entirely hiding anything health-related. And so I was curious to see what would happen or what the responses would be like.

Kat Harrison  

And did it? Did it have an effect, Skye? Did it do anything? 

Skye Gailing  

It affected, I think, the age group of people who swiped right or who wanted to match or whatever, because I found on the apps where I presented as disabled, and I was very in your face, like disability justice-focused in the profile, it was mostly people 28 and older who would swipe right. 

Kat Harrison 

That’s interesting. 

Skye Gailing 

Yeah, it was older people who would swipe right. And then, yeah, it skewed younger if I presented as completely able-bodied and everything. But… the line of questioning I would receive, even from those people who may have been older or like, if they’re more mature, or they just get it, they get that I’m a complete human being, no matter how I present or whatever. So I did get some interesting questions on Hinge. 

Kat Harrison 

Oh, tell me. 

Skye Gailing 

Yeah, when you swipe right, you can respond to a photo or a fun fact you put on your profile or something. And so, because Hinge was the one where I was like, “Here’s me looking cool with my cane!” “Here’s me after I slipped a rib in the ER,” and like throwing up a peace sign, you know. My fun fact was about the hyoid bone, it was all very medical. 

Kat Harrison 

Very Skye. 

Skye Gailing 

Yeah, that’s the one I felt the most authentic, of course. And I did get some questions. They would respond to the photo of me in the hospital and be like, “How long have you been sick for?” “It looks like you have a long-term medical issue. Can I ask what it is?” 

Kat Harrison 

I feel like it’s kind of like damned if you do, damned if you don’t, right? It was this idea of like, “OK, I am not going to mask. I am going to show you all the parts of who I am.” It’s not even the fact that they’re still willing and it’s not that they’re seeing past it, it’s more that they’re just recognizing that it’s a part of who you are. But then comes the really terrible part, which is like, “Yes, I’m going to intrusively ask you questions.” By the way, to anyone out there, it is never OK to ask someone intrusive questions about their health or their disability unless you have that level of relationship with them,  have the consent to ask them those questions. Definitely not when you’re trying to score a date with them!

Skye Gailing 

No, no, not at all. Yeah, it was interesting. I mean one person had asked a question — and from their profile, I got the feeling they were also disabled. So I was like, “OK, that’s fine.” But for the most part, that was not the case. Yeah, a lot of curious questions. Definitely that vibe of like, “Oh, well, you’re too young to be disabled,” or “Oh, your hair and makeup are nice, so what do you mean you’re disabled in this next photo?” 

Kat Harrison
Womp, womp.

Skye Gailing
Yeah, yeah. So it’s very interesting. I probably even had like a in-the-midst-of-a-migraine photo and like sunglasses or something on the dating apps. But yeah… so I deleted all of them! All the profiles are gone.

Kat Harrison
How did that feel?

Skye Gailing
It was good. It was good. I will say, I did try a dating app called Dateability, which is made for people with chronic, physical and mental illnesses and disabilities. And that was… it’s a new app, they’re still building their audience.

Kat Harrison
That’s fair. And I think that this is the large question, right? How much of yourself do you share with other people? And when do you share it? I will say, I’ve been out of the dating game for a very, very long time. My partner and I have been together for 12 years, and have known each other for a very, very long time. But I did some online dating of my own back in my late teens, very early 20s. And I never told people about my health… ever. I never disclosed it online. If I got to the point where we were going on like 5+ dates, I really didn’t bring it up unless I needed to. And I think there were two reasons, right? I think that at that time in my life: One, I wasn’t as incapacitated by my symptoms — I don’t feel like they ruled my life as much then as they do now. But I also did it to protect myself. I don’t handle those types of questions well, Skye. I just went through a long period in my life where I just so desperately wanted to be seen and not have that be a part of the equation. Where actually my feelings are totally different 10 years down the road, and I’m like, “Guess what? My health is here!” I do it for my career, I write books about it. If you don’t like my health, that is your problem. But I think it’s a very delicate thing to kind of come into contact with. If you don’t mind sharing, Skye, I do know you were in a relationship…

Skye Gailing 

Oh, yeah. 

Kat Harrison 

…where your health came into play, and I would love for you to just tell us a little bit about that.

Skye Gailing 

Yeah so, it’s interesting, because like you were saying, “Oh well, should I disclose? Maybe I won’t, I probably won’t.” Because at this stage in my life, it wasn’t as big a deal. So I was in a relationship — it lasted like three and a half years — but I was in a relationship during the time I started receiving diagnoses and answers to things.

Kat Harrison 

What a time to be in a relationship. 

Skye Gailing 

Yeah. So now that I’m like, a year and a half post-being dumped, which is wild to say — like, therapy is great, you know, didn’t know I feel as great even at this point after. But now I’m able to see, “Wow, that was really hard on my then-partner, too,” because I was getting answers. But I also because I was so well, I just want to be “normal.” Or I was in my early 20s, like we had just graduated from college. And I was like, “Yeah, I want to take on the world and be a cool 20-something like you see in “Friends!” and everything like that. So I would try to push past symptoms or just dismiss things. Even once I started getting answers. I was like, “OK, but it’s not that bad.” And then the thing would get that bad.

Kat Harrison 

I’m curious, were you having open conversation during that period between the two of you, where you were expressing that you were pushing through or masking? Or was this like a you-doing-it-on-the-DL and just kind of letting everything else happen? 

Skye Gailing

So we were long distance for the majority of our relationship. I moved up and down the east coast during that time.

Kat Harrison 

That makes a difference, when you’re not seeing someone on a daily basis. 

Skye Gailing 

Yeah, and even though when I would get migraine attacks around him, even that was weird, because I’d be like, “I gotta go hide in a corner now. In the dark. See you in two days.” I mean, even in a long-distance relationship, health gets in the way when you’re like, “Oh, we have a weekend to be in person.” Well, if you have to be alone in a dark room with an ice pack over your eyes, you know, that takes away from some of the quality time or

Kat Harrison
Sure does!

Skye Gailing
At least, then, I was like, “OK, this is the way I’ve seen to be in a relationship. This is the way I’ve seen to be a 20-something. I have to mask the symptoms and perform these roles.” Which really, all this is to say, it kind of bit me in the ass in the end, because part of it was I wasn’t honest with myself with how I was feeling. I wasn’t honest with my partner about how I was feeling. Communication really is key. If I knew then what I knew now, I would have from the get-go been like, “Hey, this hurts” and not just all of a sudden like, “Oh, I pushed through all these activities. So now can you take me to urgent care because it’s the worst pain I’ve ever been in?” Because that did happen several times. I will say, shout-out to him, though. He never dismissed my pain and he’s like, “You need to go to the doctor? I’ll take you to the doctor.” That was good on him.

Kat Harrison 

That’s good. Let’s take a quick break to change our shades and then get back at it.

Ubrelvy Migraine Mid Roll 
Hi, I’m Ali Raisman. I’ve been living with migraine for a while. As an athlete and gymnast I was taught to just power through the pain. Now I use Ubrelvy or Ubrogepant to treat my migraine attacks. As soon as I feel a migraine attack, I take Ubrelvy, which provides me with quick relief. Once I get relief, I go on with my day. I’m partnering with Ubrelvy to share my migraine story.

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Skye Gailing  

…and we’re back! 

Kat Harrison  

I will say, the one thing that I just want to talk generally about, and is one thing that we do hear often on the site and we have so, so many articles about is the ability to be intimate and have sex when you’re disabled and when you’re living with chronic pain. So, I guess the first thing I will say is… get ready for this mind-blowing fact, Skye, you ready? DISABLED PEOPLE HAVE SEX.

Skye Gailing  

What? 

Kat Harrison  

I know. 

Skye Gailing  

Disabled people are people

Kat Harrison  

I can’t believe it!

Skye Gailing  

What are you talking about? 

Kat Harrison  

Shocking! [Laughs.]

Skye Gailing  

[Laughs.] Complete sarcasm.

Kat Harrison  

I guess where that misconception comes into play is the idea that different means bad, right? Like being disabled might mean that sex looks different. The frequency of sex may look different, and I think that chronic pain plays a large part in that. But Skye, there’s something interesting about migraine and intimacy. Would you like to tell us?

Skye Gailing  

I would love to. So there has been research that sexual intimacy, arousal, orgasm, especially because orgasm and arousal release endorphins and endorphins can act as a pain reliever, and act quickly. There are some studies and a lot of anecdotal evidence that say like, sex, whether that’s with a partner, or partners, or just yourself can help migraine. There are studies that show that, however, there is such a thing as a “sex headache.” It’s called a sex headache. 

Kat Harrison  

Really?

Skye Gailing  

Yes, because apparently sexual activity and orgasm can also be a migraine trigger. And people have their own experiences with a headache disorder that’s solely caused by sexual activity. And I guess it kind of makes sense, you know, everything’s going… blood pressure changes. Once again, with everything else with migraine, it’s like, you can’t have too much, but you can’t have too little — you gotta find the right balance and that kind of balance could change at any time for you.

Kat Harrison  

Well, that’d be really interesting to go to the doctor and have that prescribed as part of your pain treatment plan. Wouldn’t that be fascinating? 

Skye Gailing  

Yeah. It seems like it works better for people experiencing period cramps or back pain. But yeah, some people say [it works with] migraine. But it was interesting, I was reading on the NIH that there was a — what was it? — the study was called “The Impact of Sexual Activity on Idiopathic Headaches.”

Kat Harrison  

That’s like the least sexy title ever.

Skye Gailing  

Yeah. But, so, the interesting thing was, they were like, “OK, let’s pull all this data about, you know, people with migraine engaging in sexual activity. Does it help them?” But the study ended up being a bit limited, because they found the majority of the patients they talked to about it just didn’t engage in any sexual activity whatsoever when they had a migraine. They’re like, “I’m not trying that. I’m not risking making anything worse… don’t even start with me.” So, probably, an area of science that is going to continue to evolve.

Kat Harrison  

Yep, yep, all that’s valid. Mostly just wanted to bring that up to: one, kind of bust the stigma there, but then also say it’s fascinating, there may actually be something there when it comes to migraine. OK, putting the bedroom times aside, I wanted to hop into the next category of relationships. And this one, it’s a big one, Skye. And in fact, when we asked our audience which of your relationships are most impacted by migraine, for the most part, friends was the winner. Family and co-workers were inching up toward it no matter where we asked the question, but friends pretty much won. And I have to say, in my life, that is where migraine has had the biggest impacts, positive and negative. What’s been your experience?

Skye Gailing 

The same as I said before, migraine has definitely had a positive impact in terms of, you know, meeting people like you or getting closer with the friends I now consider my closest friends. But… this is only a recent thing that there’s a positive impact. I find myself — and I feel like it’s part of, you know, the chronic illness grieving process that you go through over and over again — feeling like you can’t keep up with your peers or your friends or other people your age. It’s hard. It’s so hard. It’s definitely something that like, even though I’ve been diagnosed with migraine for as long as I have been, throughout college — don’t don’t do this, don’t be like me — I would like take my migraine meds, have to wear sunglasses, and then go party like a monster anyway.

Kat Harrison  

Ditto. Why? 

Skye Gailing  

Why? It’s just setting you up for failure for the next week. 

Kat Harrison 

But you don’t want to miss out, like, you don’t want…

Skye Gailing  

The FOMO.

Kat Harrison  

The FOMO is real. And this is the best way I can describe it, is that in my friendships, even with the people who are so good, and so empathetic, and totally get it — sometimes I feel like my life is standing still and their lives are moving. And it’s devastating. And I would say to me, that’s been the hardest part, especially like, you know, I’m older than you, Skye. Got some years on you. And all of my friends have kids, at least one kid. And that’s a drastically different life than mine, right? Like I wake up in the morning thinking, “How can I make my body feel the best that it can today?” And when they wake up in the morning, they’re thinking something totally different. And it’s not bad, but it’s really, really hard.

Skye Gailing 

It’s so challenging, and it’s like how social media has its plus and minus there too. Because it’s like, OK, social media allows me to keep up with friends especially because, I mean, you and I both went to college far away from where we’re from, and where we’ve now moved back to. And I love social media so I can keep up with those friends who ended up staying in the area, because all of my friends ended up staying in the area and now they all live near each other, and I’m very jealous. But I have to live with my family for now so I can go to doctors’ appointments and take care of my health. And I’m very lucky to be able to do that, but I do feel like I’m missing out on a lot of experiences. And through social media, while it’s great for connection, I’m also seeing everyone and their mother getting married. And especially when I had just been freshly dumped and my health was really bad mentally and physically, oof, everybody’s getting married, they’re moving in together. And I’m like, “All right, time to go back to my childhood home!”

Kat Harrison 

And then actually, I don’t want to harp on friends too much because we are going to have a whole episode dedicated to it later, but I think a lot of the difficulty and tension in friendships absolutely carries over to family. And I think the dynamics are really different. We actually talked about this, Skye, in terms of like, whether you live with your family or not, whether your family sees you regularly — that has a really big impact on how they feel about your health. Are they exposed to the elements? Do they actually see you at their worst? Are they only seeing you when you’re doing OK? Are they only seeing you when you’re pushing through the pain? That has a huge impact as well.

Skye Gailing 

Yes, like I said, I live with my parents and my sister. This period of time has been the second time I’ve had to move back home — from a ways away, from living with friends and stuff — because of my health. And don’t get me wrong, I am so beyond lucky to be able to have this option. And I’m so thankful for it because I don’t know where I’d be without having this option. And without having this level of support from my family. That being said, it can be a lot. Because not only do I feel like a burden on my family, and luckily through therapy and good talks with friends and stuff, you know, that feeling of being a burden has lessened a lot in the past few years. But I feel like a burden, but also it’s hard not to butt heads with family when you’re with each other 24/7 and when you work remotely, too. All the time.

Kat Harrison 

Yeah. And that can be a trigger, right?

Skye Gailing  

Yeah, yeah. 

Kat Harrison  

Yeah, yeah, yep. Like, for a lot of us, we have conditions that weren’t necessarily present in our very early adolescence, right? I lived a very “healthy” childhood — I had a little bit of ear stuff then — but my head pain did not start until I was a teen. And so my family, in addition to myself, is having to reconcile two different versions of me: one version being the healthy Kat, and one version being the sick Kat. And that’s really hard for me, but it’s really hard for them. Because I know that they’re constantly doing the, “But you used to do this. But you used to be able to engage in activities.” And well, folks, it’s not like that anymore.

Skye Gailing  

Yeah, like you said, it changes. Is it your immediate family who you’re like, “Oh, maybe I’ll tell them more. Or they see how I am on an average day.” Or is it the extended family where you’re like, “Alright, time to mask for this holiday. Time to pretend everything’s great so I don’t have to get into it.”

Kat Harrison 

Extended family… that brings up a good one. Here’s what I think is the real reason why the family dynamics are so different: People who are your family, who share your bloodline — which sounds very, I don’t know, that sounded very TV episode-like — they believe they’re entitled to ask you intrusive questions, to give you unsolicited advice purely because they’re family. And we all know that sometimes those are the most toxic relationships. Sometimes they are the most giving — very, very lucky to have a very good family around me. But I have absolutely encountered the extended family version of, “Tell me everything. What are you trying for your treatment?” And it’s like, “Oh, would you go up to a stranger and ask them on the street? Nahhhhh.”

Skye Gailing  

No, it’s absolutely wild. Especially they’re like, “Hey, I saw you last year, why aren’t you better yet? Like what happened in the last year?” And, whew, it’s a lot.

Kat Harrison 

I have a quick anecdote, which is that a couple of weekends ago, I was too sick to go to a family dinner and my partner went, and there was someone in his extended family who said this question: “Has Kat ever considered getting a second opinion? When my partner got home and told me that, I was just like, “Yep, 20 years into this thing and I’m like, ‘you know what? I don’t actually think I’m experiencing what I’m experiencing.’ ‘That diagnosis I got before? Nah, I’m gonna go find another one.’”

I try and step back, Skye. I know that migraine is hard for both parties and I never want it to be this idea that people who are disabled, people who are chronically ill, believe that everything about their life is the most important thing in the relationship. That’s not healthy, no matter if it’s health or someone’s career, or someone’s academic pursuits, someone’s family; one person in a healthy relationship can never take up all the space. So I recognize that it’s hard for other people and I try and remind myself of that when I get very, very frustrated. But, Skye, I’m curious about your thoughts about that concept.

Skye Gailing 

Yeah, I mean, I’m not quite at that, like, acceptance stage. I know that everything’s been super hard on my family. I especially, we’ve talked about our younger siblings, like being the “sick kid.” And then you have your other sibling who maybe doesn’t get as much attention. And as a kid, you’re like, “No, no, our parents love us equally.” And they do, and we get even attention. But then, you know, you get a bit older, you’re like, “Oh, no, I actually got more attention in a bunch of ways because of my conditions.” So I know that it’s very hard on other people. But I’m still recovering from feeling the excessive guilt of having a condition. Like I said before, that feeling of being a burden on everyone around me. It’s only been in the last year, not even, that I stopped describing myself as just a useless burden. And I’m still working…

Kat Harrison 

You’re not. 

Skye Gailing 

…believing it all the time. Hey, thanks. And like everyone out there…

Kat Harrison

You’re not a burden either, everyone listening. It is, to me, one of the most difficult feelings to wrestle with, especially with migraine — if you have chronic, if you have intractable migraine — it just doesn’t leave. I almost feel like a burden to myself sometimes.

Skye Gailing 

Oh, my gosh, I turn against my body a lot. 

Kat Harrison

Like, it’s really difficult to exist in this skin and bones right now. I think, Skye, and I think the part of it does come with age, and the longer you live with the condition. I hope that one day, you reach a point in your journey where it’s like, “This is just who I am. It sucks. But there’s nothing wrong with us.” Right? There is — logistically and bodily — there is something wrong with us, but we can’t help it. And I think that that’s where it comes down to like, is this a healthy relationship? Is it not? And whether, Skye, it feels like a burden, whether the burden becomes a reason to have an imbalanced relationship. To me, I think it’s really what it comes down to.

Skye Gailing 

You always have the best nuggets of advice. My goodness.

Kat Harrison 

You know, it’s that wise person in me which is coming out — that, and the wrinkles. Hey, yoooo! Well, Skye, thanks so much. I am very glad that we’re gonna have a couple more episodes that dive into relationships, because I think there’s a lot that we weren’t actually able to get to. But I hope that everyone feels like we were able to give a little bit of time to each of the types of relationships. As you notice, we didn’t even talk about co-workers aside from at the beginning, because we have a whole work episode coming out and we’re coming in hot with the work episode. 

Skye Gailing  

I’m so excited for that one. 

Kat Harrison 

I’m so excited as well. We’re going to have a really incredible guest. It’s going to be spicy. Really, really looking forward to it. 

Skye Gailing  

Yes. And thank you, Kat, for being here. Thank you so much to everyone for listening. 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 talking about stigma and the antiquated application of pain scales. I cannot wait.

Skye Gailing 

It’s gonna be a good one. 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. 

Skye Gailing  

Buh bye!

Originally published: July 17, 2023
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