Kelsey Darragh is a writer, comedienne, and former Buzzfeed producer. She currently hosts the podcast Confidently Insecure, and is a regular on Dating: No Filter, where she boldly shares some of her best and worst dating escapades (season 3 premieres Feb 4th on E!). You may also remember her from a series she did with former guest Lara Parker – Can We Cure – which took them both to a laser clinic in Florida to explore chronic pain management therapies. Kelsey may be funny as hell, but she also lives with one of the most painful chronic pain conditions we know: trigeminal neuralgia (as well as anesthesia dolorosa, a co-morbid condition that causes her to have constant facial pain). An outspoken LGBTQ+ and mental health advocate, she’s also been very open about her struggles with anxiety, and has partnered with organizations like NAMI to raise awareness. In this episode, we get down and dirty on ableism, life with chronic pain and anxiety, gaslighting in the medical industry, and how we need to actively seek to change our perspectives in order to better understand the world around us. Ladies and germs…meet Kelsey.
Key links mentioned in this episode:
Tune in as Kelsey shares…
- that she developed trigeminal neuralgia (TN) after two botched jaw surgeries
- that her surgeon gaslit her from the get-go after her surgeries, telling her it was all in her head and part of the healing process that she should be in such pain
- that her surgeon has avoided her since, and she is now seeking legal action against him
- that she started making content about her chronic pain in 2016 in response to her own frustration
- the difference between a statute of limitation and a statute of repose in medical malpractice lawsuits
- her mission: to turn her pain into purpose
- that most people with TN don’t get the chance to move forward with litigation – which is part of the reason she’s pressing on
- that her TN pain comes in flares, and she was last admitted to the ER in 2017
- how anesthesia dolorosa presents: her main source of daily chronic pain, it is confined to the bottom half of her face and constantly creates burning, stinging, and fire-like sensations
- that she’s had an anxiety disorder since she was young
- the mental health aspect of living with chronic illness – and how important it is to take care of one’s mental health, especially as a Spoonie
- that she also developed agoraphobia in response to her chronic pain – because of the unpredictability of her TN flares
- that she told herself she wouldn’t let her chronic pain stop her from living – she actively seeks to leave her comfort zone now
- that she doesn’t take for granted that she presents as able-bodied, and doesn’t appear outwardly to be disabled
- the concept of “bravery” for Spoonies, and what it really means
- how gaslighting can look so different in the medical industry between white women and women of color
- the challenge of being an advocate when you struggle to take care of yourself, as well
- that she has exit plans for every situation in order to curb the anxiety she has in relation to her chronic pain
- how she communicates with her pain: she invites it along with her in order to control her feelings about it, making the choice to keep living despite it
- that she endorses the use of medical marijuana before pharmaceuticals for pain management – but that she can only tolerate CBD, and not THC
- that she uses pharmaceuticals, acupuncture, and various other modalities regularly to treat her pain (in addition to CBD)
- that she’s started taking better care of her whole body with exercise, going sober, fostering animals, prioritizing high-quality rest, and being intentional with her energies – doing the work
- that she recognizes her privilege in access to treatments, lifestyle modifications, and medicine
- that laser ultimately didn’t work to treat her TN – but some forms of TN can still be treated with it (and Kelsey recommends TN patients look into it)
- why her partner, Jared, is such a good support system
- how self-advocacy looks for Kelsey: boundaries, and a clear discussion of expectations
- that she offers fellow Spoonies permission to practice self care in whatever way they require
- the importance of checking your ego when practicing self-care, and understanding perspectives other than just your own
- examples of prejudice she’s experienced in the medical industry
- her top tips for chronic pain patients
- that part of the process of acceptance and growth she’s endured has been to mourn the person she once was and embrace her post-surgery life – which has, in many ways, empowered her
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Lauren: Okay guys, thank you so much for joining us today. I’m fangirling once again because I am joined by a fellow Spoonie who many of you know and love … it’s Kelsey Darragh!
Lauren: Hey! She lives with trigeminal neuralgia, and co-morbid conditions, anxiety. So we’re going to get into all. She’s a former BuzzFeed producer, the host of the podcast Competently Insecure. She’s a comedian and her show on E!, Dating #NoFilter, premieres February 4 for the second season?
Kelsey: Yes. I don’t know! 2.5.
Lauren: 2.5, awesome!
Kelsey: Thank you so much for having me!
Lauren: It is such a pleasure. I’m so thrilled that we connected, and once again connected through Ilana Jacqueline. Let’s just get straight into it. Tell us when and how you first realized sh*t was going down with your body?
Kelsey: Sure. So I think my story’s a little bit different from a more common Spoonie story, where it’s something genetic or something that they kind of grew into.
My story starts with a botched surgery.
So I actually had someone do this thing to me that caused my life to change drastically. Which I know is very different from a lot of people who, unfortunately, are constantly searching for answers, for causes. So I’m not unaware that I am lucky in the fact that I kind of know what the f*ck happened to me!
Lauren: Sure. But it seems to be a more common thing in trigeminal neuralgia especially; it’s often a surgery a surgeon f*cks up. They hit the nerve … and there you go.
Kelsey: Yeah. A lot of dentists it happens with as well. So I had a botched jaw surgery done in 2015, which was actually my second surgery for my jaw. I had one in 2009 that went fine. Then 2015 was part two. And I woke up and knew something was immediately wrong, because my teeth wouldn’t close and I was having insane pain and I was on morphine, Demerol, all that good sh*t. I voiced my concern, and I spent three days in the hospital, and I went to the doctor’s office on the fourth day, and he said, “You know what, you’re right. Your bite didn’t take. There is something wrong with the settlement of what happened.” So four days after I had the initial surgery, I went back in to do the exact same surgery over again. We didn’t know we had any options at that point. The doctor was a family friend, we totally trusted him. We knew that he had over 20 years of practice; he was the best of the best. So we had been told. And I went in a couple of days later, and had the exact same surgery done.
And when I woke up from that surgery, everything was different.
Everything, from the feeling in my face to the way that I spoke. I had major traumatic surgery done to my face, and so I was told, “For the first three to six months, of course you’re going to be in pain. Of course, you’re going to have problems. Of course, things hurt. You know, this is recovery.” And so, like many Spoonies, I was ignored and brushed aside and told my pain wasn’t as bad as I thought it was, that it wasn’t real. It wasn’t until I said, “F*ck that doctor, I’m going to go get some second opinions,” that the word trigeminal neuralgia started to get tossed around. I’m sure a lot of Spoonies have that moment when they Google something — and then when they read the description, their stomach just drops out of their ass and they go: That is exactly what it feels like. That is exactly what it has. And so I had this kind of aha moment of, like … holy sh*t.
Lauren: Were you outside the statute of limitations to sue this guy, too, at this point?
Kelsey: Not yet. I had a couple of months left, and I was going in between a bunch of doctors, trying to gather paperwork and diagnoses and I was getting all these scans done. And in the meantime, I was flying home. I had the surgery done back in Florida. I was flying home, and anytime I would try to go see this doctor that did the surgery, he was so conveniently out of town, or couldn’t return my calls.
I was leaving sobbing, hysterical messages with his assistants, like, “Please tell him to call me back. I am in so much pain.”
“This isn’t right. I’m afraid I have an infection.” And finally I said, “F*ck it, I’m flying back down there.” And when I went down there, the day I was supposed to see him, he sent his partner to see me instead. We had a feeling that, at that point, he knew what he had done was pretty intense and f*cked up. And his partner threw a bunch of different scenarios out there, like, “Oh, no, this is what this is. After a year, feeling will come back.” And I’m, like, “I just feel like you don’t understand what’s happening.” So he kept telling me, “Wait a year, wait a year, wait a year.” And at this point, I had just gotten my job at BuzzFeed, which was my f*cking dream job, so I didn’t really have the time to also deal with this trauma that was happening to me. I was so focused on being above the pain and finding joy and happiness in other ways, that by the time I got all the paperwork together and was ready to confront this guy with a lawsuit, we found out that the statute of limitations in Florida was only a year for that surgery.
Lauren: It seems to be a year for most places.
Kelsey: I will say, for many years … I found that out in 2016 … I started making content about it, because I was so frustrated, I didn’t know what to do with my anger. And just recently … this is now four or five years later … I found out about the statute of repose, which I had never heard of. And I’ve been talking to a lawyers for four years. But I found out the statute of repose is, if something new comes up, even post-statute of limitations … if a doctor were to look at me tomorrow and say, “Oh, it’s not trigeminal neuralgia, it’s this,” it basically starts over from the day of diagnosis. So what happened was, we found out that one of my implants was failing, that he had put in, and a doctor looked at the CT and said, “You have a failing implant.” And I went f*cking yes. This is my in. Statute of repose. He hooked me up with some doctors and some lawyers, and I have appointments that are being set up right now.
We’re gathering all sorts of records, and it feels like the fight has begun again.
The battle cry, the horn has been tooted and I’m, like, “Okay, we’re back. Let’s go!”
Lauren: Yeah! Well, it’s interesting too, because … so I watched Can We Cure, which you and Lara Parker did together. And I’m sure a lot of our listeners have also watched it. And in that, you wrote a letter to this guy and you sent it to him eventually, right? Your boyfriend helped you put it in the mail, because it was really stressful.
Kelsey: It was so traumatic.
Lauren: He knows you’re pissed, and there’s literally nothing he can do about it because it’s his fault because he f*cked up. So, I’m sure you can’t talk about the details of the case very much because you’re still putting it together. But it sounds like this guy is gonna lose his license.
Kelsey: You would think. But every lawyer that I’ve talked to … if any Spoonie has ever tried to take legal action, they know that it is the most stressful, hard part of the process. And every lawyer I’ve talked to has been, like, “Are you sure you want to do this? What is your intention behind doing this? We have to warn you, this isn’t going to be easy, it’s going to cost a lot of money.” And for me, I had so much f*cking anger for so long, that I had to learn how to forgive this person, this guy that did it to me … that it became now about quality of life. Like, now it has become about how am I going to afford to pay for treatments for the rest of my life? And if I really think about it too much — the rest of my life — I go to a very, very, very scary place. So I don’t think of it in that way. I think of it as day-to-day. What can I do today to try and make this better?
How can I feel like I have done everything I can to turn my pain into purpose?
And I have to imagine that this guy has seen my video. I just can’t imagine …
Lauren: Well, he could live under a rock. It sounds like he’s hiding under a rock, at the very least.
Kelsey: I mean, I’ve let that anger kind of go with the personal sh*t. But now it’s become more about, again, doing this for people. 99% of people with trigeminal neuralgia do not get this chance to move forward with litigation. And so for me, I’m just trying to take advantage as much as I can at what I’ve been given by the universe. And I feel like the universe is doing its thing, and I’m just trying to ride that out.
Lauren: Yeah. So okay, we’re talking … this is the trigeminal neuralgia thing. What about co-morbid conditions? Did your anxiety start because of the TN?
Kelsey: Definitely, it was exacerbated. So I have what’s also called anesthesia dolorosa, which is the main source of daily chronic pain. The TN comes in flares. I’m lucky in that sense; a lot of people live with TN that comes every day, and I have been in remission from a serious TN flare-up since 2017. That was the last time I was admitted to the ER. But my daily chronic pain lies with the AD, the anesthesia dolorosa — and that is localized in my chin, in my bottom lip, and about 50% of the bottom half of my face. That’s the daily chronic, burning, stinging, firey, tight-knit … that’s what is my battle every day.
On top of that, I’ve always had an anxiety disorder — since I was a little girl.
And I felt like I was managing it really well. By the time the surgery happened, I had been in and out of therapy and the system for 10-plus years. And then when this happened … and I’m really glad you asked about it, because I don’t think we talk enough about the mental part of being a Spoonie — that you can get in some really f*cked up places if you are not also taking care of your mental health. Because the number one issue that I have is frustration. I cannot get frustrated without sobbing, and getting into a very dark place. And frustration is probably, I would say, the most common feeling amongst chronically ill people. When and how do you manage that feeling of … hopelessness?
Lauren: Yeah, not knowing when it’s going to come on, when’s it going to start. When’s it going to end? We might know it will end, but we don’t know when. Sometimes we don’t know the triggers. What treatments will be developed.
Kelsey: I never had an issue with agoraphobia before the surgery. When I realized that I had these flare-ups and these bad, bad pain days, my worst pain days, I wouldn’t leave my house for months at a time. And that is very similar to a depressive episode, I realized. I found myself so fearful to leave Los Angeles, to be more than a car ride away, because of my greatest fear being, what if I get a TN attack, and I’m not at home. What would I do? What would I do?! I don’t know what I would do if I got one on a plane? That is my greatest fear.
Lauren: Oh, my God. And also with the pressure on a plane, I’d worry.
Kelsey: Exactly. And like, sinuses. I’ve got 28 screws in my face, and you just get one wrong sinus infection and it starts a whole … you never know what the triggers are, exactly what you said. And so, living with that f*cking monster behind my back, I really had to learn how to manage that agoraphobia. I still get it all the time.
But I told myself, I’m not gonna let this stop me from living.
I used to travel all the time. I was the most friendly, outgoing person. And then I found myself inside, and afraid to talk, because I was so afraid of using my face and my mouth and my muscles and my jaw. And I just said, f*ck this, I am going to force myself to seek the discomfort because I’m already living in discomfort, every single day! So why not be uncomfortable in f*cking Thailand, you know? I’d rather uncomfortable in Thailand with a coconut martini or whatever than at home. But yeah, it’s a balance for sure.
Lauren: And it also makes all of that stuff that we do every day, just driving to work or getting on a plane to go somewhere … it makes it even more stressful. It makes the getting-there part often less enjoyable.
Kelsey: Yeah, and you know, being in the entertainment industry, there are no guarantees. You sign an insurance before you get hired on a TV show. A common thing we see in the industry, actually, is with herpes type 1, the cold sore. Actors have to sign an insurance saying, if you get a breakout, we’re covered to move production. People don’t think about that, right! Everyone has f*cking herpes these days. If you have a breakout on your face, you can’t be doing Martin Scorsese close-ups with a cold sore, right?
Lauren: Or making out with your co-star.
Kelsey: Exactly. The more important thing.
Lauren: Or other people!
Kelsey: Yeah, yeah. I’m so selfish!
Lauren: Close-up on my face!
Kelsey: Exactly! So for stuff like that, my biggest fear is when I’m filling out these papers, my lawyers are going, “How do we tell them that one day you might just be completely on the floor? Unable to speak, talk, look, think?” You know, completely unable to work?
Lauren: You need a high maintenance clause, right.
Kelsey: Exactly. And no one wants to f*cking hire that … I’m not funny and good enough to have all that sh*t!
Lauren: I think you are! (laughs)
Kelsey: Thanks girl!! But yeah, these are all things that when I talk about litigation and money and suing, that’s what I’m thinking of … What if I can’t work? I’m so lucky in that I am still able presenting, you know, able to even do the things that I can do. So I definitely don’t take that for granted.
Lauren: But it’s interesting you mentioned able presenting. Because this has been like the backlash, if you will, on social media … that everyone always posts happy photos. Here’s a photo of the real thing that’s happening right now … me in the ER, me dealing with pain. You’re very good at doing that and being like, “See, this is me.” Sometimes it’s funny, but sometimes it’s also … this is how it is.
Kelsey: Right. People always say, “Thank you for talking about this.” And I always say back, “I can’t not talk about it. I can’t not.” I think that’s maybe why I’m in a different mental position now than I was five years ago, because I’ve learned … and you know who else is amazing at this, Lara Parker … is, I just don’t give a sh*t. I just don’t give a sh*t. I am talking about how I feel and who I am, and if I don’t, it becomes my entire identity. And I feel like having a little bit of an outlet to either joke about it or just be honest with people about it gives me the opportunity to therap-ize myself a little bit about it. It’s not brave, it’s very selfish of me to do. I do it for selfish reasons! (laughs)
Lauren: It’s funny you say that … not funny haha … but funny you say that, because I had Lara on the show a few weeks ago. We talked about that idea of the word ‘brave’ …
Kelsey: She’s so smart.
Lauren: That often as a Spoonie, it’s always like, “You’re so brave!” And, you know, a lot of us are, like, ‘I’m not brave. I’m just trying to live my f*cking life.’ By the same token, I still subscribe to that idea, because sometimes we have to give ourselves the credit of being, like, ‘Yeah, I’m f*cking brave. I got out of bed today. I took a shower!’
Kelsey: I teeter between that exact feeling of ‘I am limitless and can do anything,’ and ‘I also need everyone to know how f*cking hard it is for me to be able to do that.’ So I totally hear you.
When people call me brave, I’m, like, ‘No, shut up. I’m just trying to live.’
And then also being, like, ‘I need everyone to know how much pain and how hard this is!’ I don’t care if it sounds like I’m complaining. That’s the other thing … I’ve realized women, especially women of color, feel like they do not want to feel like a burden. They do not want to sound like they’re complaining. I’ve said it before that a doctor told me, “Well, if you were in pain, wouldn’t you feel you want attention? Why do you feel like that’s a bad thing? If you need help and you’re uncomfortable, wouldn’t you want people to say, ‘Oh, how can I help you?’ Or whatever.”
Lauren: You want people to believe you,
Kelsey: Right. We feel that guilt of needing people to know that we are not okay all the time. And you know, I don’t feel that burden anymore. I don’t feel that burden, because I learned how to take care of myself, and luckily I can. God forbid a TN flare-up. And it is nice to have a partner who can help massage, or drive me to appointments, or whatever. But I have realized that I have been in a position where I went to the ER and I have a nurse by the collar and I am literally screaming in her face to f*cking knock me out, kill me, do anything. I’m hallucinating from 48 hours of no sleep. And it was the biggest mindf*ck of realizing: I am in the one place that is supposed to help me, and they cannot help me. And that was a switch that just flipped in my mind. Like, hey, this is how black people must feel all the time when they go to the cops! Like, they’re not here to help me. I have to look out for myself. But that really was the moment that I went, ‘Oh my God, I cannot rely on anyone else — no medicine, no doctors, no nothing — if I cannot find a way to make myself my number one caretaker’ … if that makes sense.
Lauren: Yeah, I totally get it and I’m really glad that you also mentioned the disparity between people of color and people going through these experiences. Because it’s not just with the cops, it’s in the medical system.
Kelsey: Oh, absolutely.
Lauren: The episode we have on this week is a woman of color speaking about endometriosis — immediately after Lara spoke about it. And the difference in the experience is pretty stark.
Kelsey: I can imagine.
Lauren: Nobody’s believed, right, but some people are believed sooner and some people are taken more seriously from the get-go. That’s so systemic, but also the problems with our health industry are systemic, too.
Kelsey: Yeah. And it’s the white guilt thing, too, of being, like, ‘Well, I have this platform, and I should be lifting up and amplifying voices of women of color.’ But also, I’m tired. Also, I am not even being heard. How am I supposed to help other people? And we’ve got f*cking Australia on fire, and our President starting a war, and some days it just feels like, I don’t know how I can help people when I can’t help myself! And then I’ve gotta go: ‘Shut the f*ck up. Kelsey. You are not only surviving, but thriving.’ Just by talking about it … I’m lucky, that’s for sure.
Lauren: So tell us how you’ve managed everything … how you’ve started taking control of your health and managing your pain?
Kelsey: It’s absolutely an ongoing process!
Lauren: Yeah, I’m sure it changes all the time.
Kelsey: All the time! You’re part of these Facebook groups and these support groups, and people DM-ing you, telling you about different treatments and products … and it’s never over. It’s never one thing that works every time. My breathing exercises aren’t going to work sometimes. And my CBD won’t always be the fix. And it’s about, for me, building a tool belt of different tools to use. (A), it was learning how to prepare for any worst case scenario. If you ask my partner, he’ll tell you I have a backup plan for my backup plan for my backup plan. And because of my personality and a bit of my OCD tendencies, too, I will have … again, like I said … so many exit plans for situations, and I will pack extra materials, and I will look at every event or dinner party or birthday or vacation as … How do I stay the most comfortable? How do I dress to be the most comfortable?
How do I choose where I’m exerting my energy in this situation?
It is a lot of preparation. So that would be my first plan of advice — learning how to manage. If you have the bandwidth to think that way, which is usually type-A neurotics like me.
Lauren: And me. It’s all of us, actually. I talk so much on the show about how it’s us type-A people who are the ones who end up with sh*t like this.
Kelsey: Oh, yeah. Because the universe thinks we can handle it.
Lauren: Like, f*ck off.
Kelsey: I know! So that’s definitely my first advice. And then, mindfulness has been interesting … because the idea of mindfulness is keeping yourself in the present. And sometimes all I want to do is escape the pain that is presently literally in my face. I did hypnotherapy for a while, where I have seen people who can truly out-think their pain. And I know that’s such a controversial topic, because I have people that will suggest sh*t to me and I’m like, “Don’t you think if I could do that, I would? If I could hypnotize myself out of pain, I would do that.” I think it’s a special power that I don’t think works for everybody.
Lauren: And it’s also, you know, the hypnosis joke … but I would rather be a chicken sometimes.
Kelsey: Exactly, yeah! (laughs) So that has been very interesting, too. I did the UCLA Pain Management program and their whole thing was, “How do you, Kelsey, specifically, tell your pain to f*ck off? How do you get your brain to tell your pain to f*ck off?” And I’m, like, “I don’t know. Do you need to snip a wire or something? Is it like defusing a bomb? I don’t know … how do I physically f*cking do that? Don’t you think I would do that if I knew how?”
I think there are some days where I’m able to just say, ‘Not today, Satan. I’m not going to. I acknowledge the pain is there. I recognize it. I’m not putting an opinion on it.’
I’m not going to go … goddamn it, this is a bad day … goddamn it, I need my spoons, or whatever. I’m just going to say hello, invite it to come with me on whatever task I have to do. And I am not going to let my brain drag me down. Now, that’s much easier said than done when your face is on fire, but that has been something that I’ve spent many years learning how to control my feelings about my pain.
Lauren: And that’s where it’s a choice, too. The goal is, I choose to do this today — and to get through it.
Kelsey: Yes. And a lot of people say that is so much f*cking easier said than done. Because when it’s physical, it’s so much different from depression. Where you’re going, I’m not happy about this, but I’m going to f*cking do it anyway. Versus, I physically can’t get up because I’m in pain. That is definitely different. And so, again, I know it’s a controversial thing to say, but some days I just think about it differently.
Lauren: It’s mind over matter.
Kelsey: Mind over matter really helps, but doesn’t necessarily take any of the pain away.
Lauren: No. What about drugs? Opioids?
Kelsey: Oh, yeah, I love drugs.
Lauren: Do you use marijuana to to manage the pain?
I live in Los Angeles, where there’s a weed store on every corner.
I made a video that went megavi, as we call it at BuzzFeed! Mega viral, about CBD for chronic pain, and I didn’t even know what the f*ck CBD was two years ago.
Lauren: By the way, that was the first BuzzFeed video that I watched and I was, like, oh my God, it’s this person like me!
Who’s this chick? And I’ve been following you ever since.
Kelsey: Oh, awesome!
Lauren: Can I say that I’m like just barely containing my excitement??
Kelsey: Oh come on, this is so awesome! Full circle!
Lauren: Very full circle.
Kelsey: Yeah, and this is really cool what you do. I’m a fan of yours!
Lauren: Please! Let’s talk more about how great I am!!
Kelsey: No, no, I told you … I’ll talk forever, especially about this kind of sh*t.
Lauren: But I’m interested, and I think other people who are listening are going to want to know: Should I be going for CBD? Should I be going for acupuncture?
Kelsey: Look, CBD is the thing if you can tolerate marijuana. That would be my first suggestion before going to see a f*cking specialist. Like, if your doctor says, “Oh, you know, I can’t help you.” Or, “Take these pills.” And you just don’t like them and have that feeling of, oh f*ck. I say that in the mini-documentary. I would tell people to try marijuana before anything. Now, I’m preaching what I don’t practice — because I cannot handle THC. I can handle CBD. But the compound that makes you actually high, I don’t tolerate. My anxiety goes through the roof; I begin to disassociate. I can’t do it. So, I use things like tinctures and full CBD salves. So, CBD definitely … I’m a big fan of it. I have been through the f*cking gamut with medication. You name it, I’ve tried it. I have recently found a bit of success … actually now is about the hour that I need to take my second dose of gabapentin, which I know people have lots of opinions about. For me, I’m on an incredibly high dose. And I don’t even really like sharing what kind of medication I take, because then people go: “Ooh, I want to try it.” And I’m like, “No, no, no, no. This is five years of …”
Lauren: Yeah, and this is just what works for you right now. And it could change in a month.
Kelsey: It will change. That’s what I’ve learned about medication. I’m a huge fan though of it. If you need it, great. If you hate it, great. Acupuncture has absolutely been my favorite thing. And I will not go to a white lady in Santa Monica. I want my f*king acupuncturist to be traditionally trained. I want them to know what the f*ck they’re doing. And that took a long time to find. I was lucky enough to find someone in Los Angeles. I didn’t even have to tell him what hurt. He felt my body, and he went to places that I didn’t know were able to be reached by needle, and have effect.
I love acupuncture. I don’t give a sh*t what anyone says.
I’ve tried everything though.
Lauren: I also think it’s one of those modalities that brings everything together a little bit, too. It helps you connect the dots.
Kelsey: Totally. Your entire body is affected when you’re sick — whether it be chronic illness, pain, or a cold. Your entire body functions as a unit. And I think acupuncture really does a really good job of treating the body as a whole, and not just the “broken part”. And I’ve recently gotten into exercise and hiking. I got sober recently, which has been incredibly wonderful for inflammation.
Lauren: Good for you!
Kelsey: Yeah, I’m like 200-something days. I’m fostering dogs, which forces me to get out of the house and take walks. I know Lara probably will tell you that her dog helps her stay alive, too. When you have this other being. My biggest fear was, like, I can’t take care of a f*cking dog! I can’t take care of myself! But there’s something that happens if you’re an animal lover where you see this big derp-y doofus …
Lauren: Are you looking at Leo while you’re telling us this??
Kelsey: I’m looking at Barry, my foster dog! Leo’s somewhere. He’s in his cat cradle. There’s the huge giant cat, the absurdly comical cat. But there was something about this year that I went, you know … I’m going to acupuncture, I’m taking pills. I’m trying to treat the jaw and the nerve pain, but I’m not taking care of the rest of my body. I’m not f*cking exercising. I’m not even just taking walks. I’m not eating right. I’m drinking all the f*cking time. And I just said … what if? Like, I claim to be trying my best to get better, but am I, actually, Kelsey??
Like, I had to really take a pretty hard look at myself and be very honest with myself.
Am I actually doing the f*cking absolute … work? And again, I am lucky that I can get out of my house and walk and do a hike. I am very lucky that I can do that. It doesn’t feel good, but I can do it. And so again, when I do these things, I think about doing it for all the f*cking people that can’t, all the people that are stuck in their bed who can’t even use their legs, who aren’t mobile. And again, turning pain into purpose … and not carrying the burden of being an activist, but truly just … how can I, as a community member of this Spoonie community, make everyone proud. Or make people feel like they have something to look at? Give them hope.
Lauren: Yeah, to give them something to work with. What about laser, too? Because when you guys did Can We Cure, you were doing laser and you went home with your own laser devices. I asked Lara this, too, and she said, “We still do.”
Kelsey: What did she say… does she still use it?
Lauren: She still uses hers.
Kelsey: I know she went up back down to Florida after we shot, to do another treatment — which is amazing. Unfortunately for me, it didn’t do sh*t. I have the laser, I have a very complicated case. Again, 75% of my jaw’s titanium so it’s very hard to
pinpoint the issue.
Lauren: I don’t know about laser and titanium, too.
Kelsey: The TN that the lasers had a lot of success with was TN that hadn’t been caused by medical malpractice. It was something that someone fell into, or grew into, or genetically had. I say that with an asterisk that I would still highly recommend people with TN especially to look into that. I go to neuropathy clinics, I’m constantly on the lookout for nerve-specific treatments. Because that’s really what is tricky — nerve damage, and treatment for neuropathy and neuropathic pain.
It’s so tricky. It’s a tricky b*tch.
Lauren: It really is. Yeah, especially because people can’t see it. And sometimes it’s in places that are so deep … it’s here but it’s in there somewhere.
Kelsey: It can be in your brain, or in your neck or your shoulder. And it just happens to trip wire that tiny, f*cking smaller than a grain of sand spot. It’s really tough.
Lauren: It’s interesting, too, because it sounds like you have become your own advocate. I think most people know you to be a pretty tough b*tch; you’re not going to take sh*t from people. (Kelsey laughs) But that sounds like (a) it’s something that you had to grow into, and (b) I’m also wondering if there’s anyone else who has helped you as an advocate along the journey?
Kelsey: That’s really interesting. I haven’t really thought about that.
You talk about the tough b*tch thing, and like it makes me laugh because like I cry, every doctor’s appointment I go to.
I get so … again, the word frustration comes up. I try to make sure that I am completely heard every appointment. I will call before I go and say, “Look, schedule me for three hours. I’m telling you that if I’m paying for this appointment, I don’t care if you guys do $200 for 30 minutes, I need time to explain my full case. And if he does not have that time, don’t book me.” I try to make the most out of each doctor’s appointment. And I definitely became an accidental advocate for myself, because I ran out of options. When it comes to my parents, they live on the other side of the country, and they just feel incredibly guilty and they don’t know how to help. Out of sight, out of mind kind of situation. They don’t really get to see the really bad days; they only hear updates every now and then. They’re the only ones that have been really with me through the entire thing. I’ve dated partners that just had no clue what to do. And I’ve had people that I’ve dated briefly that I never even brought it up to — because I was, like, there’s no point in trying to go through the history. I feel like I should just show you a movie and be, like: “Here, watch this, and then come talk to me if you still want to date.” Like, know what you sign up for. But in the last two years, Jared, my partner … it has been completely different with the way he has supported me — like no other person. He grew up with a sister who has cerebral palsy, head to toe disabled with full-time caretakers. He grew up in a very hostile environment of pain and disability, and that they didn’t know how to deal with it. She’s non-verbal. She can’t see well. It was very bad. And luckily, 20-something years later, she’s in a much better position. She has full-time care. And everyone feels very good about where she is now. But he had many, many years of very f*cked-up helplessness, where he couldn’t help her, and he was a kid so he didn’t know how to help her. We talk a lot about this in therapy, where I think the reason why he is such an incredible partner and I thank the f*cking universe every day that we found each other, and I did find someone who was so compassionate and understanding … that he now is in a position where he feels like he can help, and that he wants to help, and that he has the ability to sort of … I don’t want to say make up for lost time … but kind of what he couldn’t give to his sister … he’s able to help me with.
Lauren: Well, he’s grown up to be the opposite of the environment that he was raised in, too.
Kelsey: Exactly. And that can get dangerous sometimes, because you also don’t want just one person to be your rock, you know.
Lauren: Sure. But you’re very much your advocate, too, it sounds like. It’s not like you’re relying on him exclusively.
Kelsey: No. I don’t have guilt. I don’t feel like I’m a burden again. I found a funny meme the other day that I sent to him … it was a guy who was holding up a sign that said: “People in chronic pain, if I’m not talking about it, it f*cking hurts. If I am talking about it, it really f*cking hurts.” So Jared knows that if I’m saying, “Hey, I’m not having a good day,” he knows that it is at another level than the daily stuff. So, yeah man, I’m lucky. I am so, so, so, so, so lucky. He doesn’t understand everything. He doesn’t know all the terminology. He doesn’t know every doctor’s name. But he is there for me, and he believes me, and he will put me above everything else when it comes to my pain.
And that’s because when we met, I was exhausted of hiding it and lying about it.
On our second date, I told him the entire story. I just wanted to put it all out there. I was, like, “This is what you’re signing up for, b*tch. Take it or leave it.” At that point, I was used to people leaving it, so I didn’t give a sh*t. It was a nice surprise to find someone … you know, it restored faith in humanity, as the Internet says.
Lauren: Yeah, absolutely. So let’s change gears a little. I wanted to get your thoughts on your … rocky, if you will … experience with the health care system. It’s a pretty common discussion; we pretty much know it’s broken. But I’m wondering if there are ways in which it has worked in your favor — as well as ways in which it hasn’t.
Kelsey: Okay. Sure. Much easier to talk about the ways in which it hasn’t. But let’s start off with the bad so that we can get to the good. I think it is f*cked, from a level of infancy. The fact that you know, we don’t know what any of the languages and dealing with medical insurance …
Lauren: Lack of education.
Kelsey: Lack of education, and the lack of access. Why are we learning about mitochondria being the powerhouse of the cell — and not deductibles? If I had the choice to make a f*cking school curriculum, healthcare would probably be number one.
Lauren: Healthcare and finances.
Kelsey: Yes, healthcare and finances. And computer sciences and coding, right? Yeah, absolutely. I think it stems from a level of … when this was all happening to me, my first surgery was when I was 19. I was still on my parent’s insurance. They were the ones that dealt with bills. They were the ones that had the phone calls with the doctors. I was blissfully unaware. And so when things got really bad, and I was on the other side of the country, and I had to be making these phone calls, and I came off my parent’s insurance … I was completely lost. I didn’t even know where to f*cking start. All I know is, I was on these phone calls and I was being put on hold. Every conversation ended up being a 45 minute to an hour-long subject that I would end up in tears by the end. It became a very negative experience. I hate the word; it’s very triggering. Having to call anybody on the phone about my health gives me overwhelming rage and anxiety. I hate that, I’m very aware of that; that’s my feelings towards it. And I’m actively trying to make it feel like empowerment over powerless to the system. So again, that comes with, coming as prepared as you can, not being afraid to ask questions, not being afraid to fight for yourself, not being afraid to say, “Can I speak to your f*cking manager, even though I am a white lady with a short haircut? I am not afraid to be that stereotype. Let me speak to your f*cking manager. I don’t give a sh*t.” And being there with kindness, that honey always catches more flies than vinegar, that these people are just doing their job. I think I was able to learn how to … it’s like putting on a hat, right … I tell myself, I’m going to put on this hat and be this person and talk this way. And, “Oh gosh, ma’am, I’m so sorry. Happy New Year. Thank you so much.” Whatever I gotta f*cking do to get what I want from these people is what I gotta f*cking do.
Lauren: I feel like performers have an easier time with that. You’re used to working an audience. So you can work someone in a call center.
Kelsey: Absolutely. I can’t imagine what the average Joe, who doesn’t have these superb sketch comedy skills! Yeah, it really is like playing a character for a few hours. And again, setting aside the time — and then also saying, I’m going to set aside time to not have this conversation. When I do speak with my dad who’s helping me with the case, I have to say, “Hey, Dad, when I come home for Christmas, I will sit down and talk with you for this amount of time about it. And then for the rest of the time, I don’t want to talk about it.” Putting up those boundaries. And also thanking people when they’ve helped. And I know that my dad could also say, f*ck you, I don’t have to help you at all. So coming to an agreement of knowing when is my time to also be grateful and thankful … and when is the time to be angry. In a way, the system has helped me … maybe indirectly, it’s helped me in that BuzzFeed was an amazing company that had unlimited sick days, and a very young HR department and a very understanding culture of what wellness and chronic pain was. I give a lot of credit to the Spoonies at BuzzFeed who made the culture that way. But we could do our jobs from anywhere, you know, most of the time. And them understanding that, I feel like they set a precedent for me moving forward with any other sort of hiring situation — that I know what I need and what my standard is of care, and not being afraid to ask for it. Because guess what, I have the f*cking numbers to prove that I can be successful now. And if I need to work from home four days a week, I can still deliver. Again, incredibly spoiled in that sense, because I can’t even imagine how many people that have a regular 9-5 aren’t afforded that opportunity. And the lifestyle change.
Lauren: You say spoiled. But everyone should be treated that way — because people matter.
Kelsey: It’s a foreign concept, yeah. You’re right … whenever I use that language, and I start to kind of harp on myself a little bit, I stop and tell myself actively sometimes … I will literally sit here and say this out loud to myself in an empty apartment … “50% of Americans have chronic pain.” 50!
Lauren: That’s just the people who are reporting it, too.
Kelsey: Exactly! And that’s not even chronic illness. Add everything else. It’s the same with anxiety. The second I started talking about it, the more people came to me saying, “Oh my God, thank you. I never thought I could talk about this.” Or, like, “You helped me come out as anxious,” or whatever it is. I have to sit here and stop and say, ‘I am not alone. I am not f*cking crazy. I’m not needy. I am not irrational. I’m not being a problem or a burden.’ And I think for anyone who maybe doesn’t have that luxury, that can’t stand up and stick it to the man all the time, is to at least just walk through your day knowing that. You know, you don’t always need to voice it, and you don’t need to walk into your boss’s office and kick the door down and say, “I want more!” Better healthcare or whatever. At least, to believe it yourself.
And know the statistics, and know the facts about how many people live with this, and know your rights.
Lauren: Know that you matter.
Kelsey: Know that you f*cking matter. At least get that drilled into your head.
Lauren: Kelsey gives you permission!
Kelsey: I allow it! I giveth!
Lauren: The self worth-th!
Kelsey: (laughs) The self worth-th is my favorite new saying! You’re totally, totally right. That simple phrase can mean so much. It sounds stupid, but …
Lauren: I don’t think it sounds stupid at all, because it’s legitimate statistics, and again, this is just the sh*t that’s being reported.
Kelsey: We don’t even know.
Lauren: These are epidemics that are beyond the proportion of what we even have data on.
Kelsey: And I think that that also just comes back to the simple fact of talking about it, not being embarrassed about whatever condition you have. I even have to f*cking check myself sometimes; I’m not gonna lie. I have to check myself sometimes at people who are spokespeople. Sometimes I want to roll my eyes a little bit at “the way it’s shoved down my throat” and then I have to f*cking check myself. I’m not gonna lie. My able-ism is not settled, and is not as woke as I’d like it to be. And balancing how I feel about people whose entire agenda and motive and MO and identity is based in their disability. That’s something that I definitely think about a lot … why do I feel a type of way? But I mean, at the same time, I’m kind of like … you know what I’m talking about right?! You know those people!
Lauren: But we also live in such a pervasive culture of able-ism. It’s kind of hard to remove yourself from it, or remove it from your identity as well — when you were brought up in a certain belief system that’s not even discussed until we talk about it on my show.
Kelsey: We need those people that are kind of obnoxious about it. And I try to think that I balance it well. But I follow so many people because I want to flood my feeds with people that aren’t as able as I am like. I do that on purpose, and then I find myself being, like, God, just shut the f*ck up. Can you tweet about anything else?
And then I’m, like, but we need those disruptors, we need those people.
They’re doing things that you’re not doing.
Lauren: There are some people, when they harp on one thing, if they do it long enough, and if they do it with enough vigor … it sounds like I’m talking about sex! Yeah, if they do it long enough, and they do it hard enough … (laughs)
Kelsey: (laughs) … someone will come!
Lauren: It is true! It’s that squeaky wheel, isn’t it?
Kelsey: Yeah. And I think it’s about attitude, right. Because you can have these conversations about a lot of things, like race, right? White people are, like, “We’re so sick of people shoving it down our throats! Our generation didn’t do these things.” Well, you have to realize that people of color are f*cking exhausted, and they have no reason to be kind about it. You’re lucky if you get a kind conversation about it, because I would be the same f*cking way. And so I try to remember that same idea in disability is like … I’m on a different path, a different journey than these people, and what they’re doing is important and valid. And I’m lucky that I bear witness to the work that they’re doing. And maybe it’s not said the way I want them to say it, and maybe it’s not on my time that I want them to be advocating. And maybe sometimes I’m just exhausted of seeing and dealing with chronic illness and pain that I’m just, like, I just want to see some stupid cat gifts. I have to stop and hit the heart button and then move …
Lauren: … and then move over to @weratedogs.
Kelsey: Exactly. Thank you so much. Great account to follow.
Lauren: But it is that exact thing. I have the exact same thing in my social accounts. I consciously removed myself from listening to the 24-hour news cycle or watching the 24-hour news cycle. When I seek information, it’s very purposeful. And there are specific people who we’re following on social media because we’re looking for information. We’re looking for disruptors, for people who are engaging in the conversation, who are pushing it past the limits that we thought existed. But at the same time, sometimes we just need to …
Kelsey: Turn it off.
Lauren: Watch a cat jump on a mouse or something.
Kelsey: Exactly. And it’s been interesting to confront my own able-ism, in being, like: Why? Why do I feel an innate annoyance over compassion? Why? And I think it’s probably a reflection of how I feel about my own sh*t. That’s always what it comes back to, your own f*cking ego.
And so, to ego check myself has been very fun, because, like I said, I’m a very sensitive being.
I cry when I’m frustrated. And so again, coming back to what I said in the beginning and to actively put myself in a place of discomfort, it helps me grow.
Lauren: Yeah..I love how you said that. Is that grow with a question mark? (laughs)
Kelsey: Is that? Would my therapist agree with me?
Lauren: Or is it that you’re supposed to be moving in that direction anyway, and it’s not so much growth as it is something else…?
Kelsey: Right. Am I on the wrong side of history, or whatever?
Lauren: But I think, also, this idea of able-ism has been so innately tied to all of these ideas of social justice.
Lauren: … that are even more buzzy conversations now in this post-truth era.
Kelsey: I like what you just said.
Lauren: Yeah, because I think we all feel well … well, not all of us, obviously, but I’d say the majority of us feel … more responsibility for one another. And that’s becoming ever more clear when we have a government that doesn’t necessarily do the things we want it to do. Or when we’re experiencing things in the health system that are working against us. There are so many things that I think we’re realizing are broken, that we knew were broken.
Kelsey: Adulthood is hard. Can we just go back to coloring and sh*t. It really is what you said. That’s so, right? Again, I think that’s why I force myself to stop and like all those tweets — even if it’s like what you said, if it’s just the broader social justice-y thing right now. We all really do need to go hard in a certain direction.
Maybe it’s also the entertainer in me. People love a f*cking point of view.
And I think I have a very strong point of view, but I’m also so afraid of being called out on my sh*t. I am so scared of being yelled at, or being wrong. I’m getting over the idea of that fear. I look at my activism and mental health, and other aspects of my life where I feel so confident, because it is so personal that I feel like I could educate myself a lot more. Like you said, we’re all just trying to keep up.
Lauren: And it’s about balance. It’s also about just sometimes giving yourself a break from it, because like we all need to recharge somehow. It’s like that meme we always see … everything works better if you plug it in, or you unplug it or whatever. You plug it in, you unplug it …whatever you want to do.
Kelsey: (sings) Plug it in! Plug it in!
Lauren: That’s what I thought, too! There’s how pervasive advertising culture is! But it’s really like we all just need to find the ways, and navigate the ways, and create the structure and the boundaries for ourselves to f*cking chill out sometimes. Because you can’t be ‘on’ all the time. And hey, white people … that’s why black people are so f*cking exhausted — because they have be ‘on’ all the time.
Kelsey: All the time. I think about the women of color I follow on Twitter who tweet 20 times a day, and I’m, like, they do not have to be doing this. I am lucky to read their words, because otherwise I would be as ignorant as I was growing up in a small conservative f*cking right-wing Christian town.
I am lucky I got out.
I’m lucky I have this ability to read their words. And I feel the same way about the women that I follow that talk about disability, because …
Lauren: Women being the key.
Kelsey: The point being …
Lauren: There are great dudes out there, too, and everyone and everything in between. It’s very interesting. I was having this discussion with my GP right before this interview. She was, like, “So your medical team …” And we were looking through … and every one of my doctors is female, and they’re all people where I sit and have conversations with.
Lauren: And it’s very interesting because I’m, like, Oh my god, you’re right. Happy f*cking New Year to me!
Kelsey: That’s amazing!
Lauren: But who are the ones who are providing the care that have finally met my standards? Nothing against the dudes of the world! We can’t live without you.
Kelsey: I’ve never had a choice. With my entertainment team … my manager, agent, lawyer, everything down to my business manager are all women — because I had that choice. With trigeminal neuralgia, there is one guy in LA who people are, like: “This is the guy!” And then I was seeing one guy for a very long time at Cedars-Sinai, who performed two nerve blocks on me — and then he went and f*cking died! And I was, like, how selfish!! How dare you die? And then, of course, I was, like, Oh, f*ck me. But I really did put myself first there for a minute, and was, like … what a dick. You sit there with me for three hours every appointment, and I trust you, and we have a great thing going, and then you f*cking die!!
Lauren: Was he old??
Kelsey: Yes, he was old.
Lauren: You forgot that exit plan.
Kelsey: I forgot that exit plan! And here’s the best part … he created exit plans for all of his patients. He had like a month of when he was diagnosed with cancer and when he passed, and in that month, the entire time he spent in Bermuda with his wife, building exit plans for every single one of his patients.
Lauren: That’s amazing.
Kelsey: And that’s how I got passed off to the UCLA Pain Management Center, because he took the time to study my case and go, ‘Who would be the best doctor after me for her in case anything happened?’
Lauren: That’s f*cking amazing.
Kelsey: Yeah, but it’s still a dick move for him to die in the first place.
Lauren: (laughs) Yes, let’s just leave it with that.
Kelsey: Yeah, sorry, guys.
I’m a comic. I deal with pain through comedy.
Lauren: So do a lot of us, though. And a lot of us turn to you for that, too! So okay, what about, also, undue prejudice. Have you been in, and are there any specific experiences that you can recall right now … experiences where you were judged, either because you were a woman in pain that people weren’t believing. Or because you had something that no one could see, and people were, like, “What are you talking about? There’s no tumor, so you’re fine.” Have you had these adverse experiences that have been very specific, or anything that you can recall that comes to mind that makes you go, Oh, this f*cking one time …
Kelsey: Yeah, sure. You know, it’s interesting. I usually have two kinds of experiences. One, people have followed my story and know, and will come up to me and talk to me and be incredibly gracious and compassionate. And the second is when I have to drop the knowledge, I feel like I’ve built up this routine of the way that I talk about it. Because after telling my story so many times in an awkward way, where people kind of confronted me with “Oh, God, oh, Jesus Christ. Really? That’s awful! Your life, holy sh*t …” and not knowing how to respond. I learned how to do the song and dance.
Lauren: PS, we all all just need you to say, not “I’m sorry.” We need you to say, “That sucks, and I’m here for you.”
Kelsey: Yeah, yeah. And so, after dealing with that so many times, you kind of develop a song and dance to talk about it. But I will say, that’s what I’m talking about socially. As far as medically, that is where the issues have come up. One has been my age, for sure. I was dealing with this sh*t in my early 20s, and having to go to these doctors’ appointments with these f*king dinosaurs who have been practicing this sh*t for forever, and have the same medication. I’ve had doctors come in … I can think of one specifically … that would not even remember my name. And he would be, like, “What did we have you on?”
And I’d be, like, ‘You’re the doctor, b*tch!’
Lauren: Look at the f*cking chart!
Kelsey: Look at my f*cking chart! At least act like you read my chart before you walked in. Don’t ask me what we’ve done! I have tried so many goddamn pills and procedures, I cannot keep track of all my f*cking symptoms. I keep a pain journal, sure. And I can f*cking remember what I can, but, like, ‘Dude, don’t let all this sh*t fall on me. We are a team here, and that is frustrating as f*ck when you’re not even going to try to pretend like you remember my name, or what we’ve done. And I also have a big problem … because I also have these issues with my mental health with anxiety and depression … not taking that into account of what we are prescribing or treating. I have to actively be, like, “Hold on. Will that affect my mood? How are you going to work with my psychiatrist? Also, are you going to call her and have conversations with her?” I’ve definitely had that frustration of feeling like I’m being bypassed with how intense my condition is. And I go into every doctor’s meeting like this … “I’m going to be your most complicated case and your problem child.” And they usually laugh and say, “Well, I’m a specialist. Everything I see is complicated.” And I go, “No. Listen to me. Here is a stack of CDs. Here’s a printed-out pamphlet of all my surgeries. I’m going to send this to you beforehand. I want you to f*cking read it. I want you to read it, so that when I come in and tell you my bullet points … ” I literally have a file saved of bullet points of how I talk to doctors when I have to see a new doctor … it’s a gut feeling, and every Spoonie knows this.
And if you feel like you are not being heard, walk out of that door.
And ask for your f*cking money back, write a Yelp review, tweet about it, talk about it. I don’t care if it sounds like you’re being a f*cking dick. But if that doctor is not a good doctor, f*cking say it. I would say my doctor’s name, I’ve been wanting to say it for five f*cking years, but because of the litigation I’m not allowed to say it.
Lauren: Don’t worry, we’ll have you back on the show to do it when you win!
Kelsey: When I’m swimming in my health care bank account, I’ll come back on!
Lauren: Your brand-new HSA!
Kelsey: Yeah, exactly. We’ll talk about that.
Lauren: Well, I’m excited to hear how that goes. So listen, we’re going to round everything out, and I end my interviews with some Top Three lists.
Lauren: Just two of them. We’ve sort of gone through this a little bit while we’ve been chatting, but top three tips … if you can sum them up … for someone who maybe thinks they might be joining the Spoonie club or maybe is in it. Or has TN or somebody who is living like us. What would you recommend for them to make sh*t happen.
Kelsey: Sure. I’m going to talk specifically about facial pain. Because I think that’s a very tricky place. My first piece of advice is, number 3, is: Go straight to the top. F*cking skip the orthodontist, skip the dentist, skip your general practitioner. If you can, go straight to a neurologist or a maxillofacial pain doctor. See them first, because you’re going to save a lot of money and f*cking consultation fees and X-rays.
Lauren: And time.
Kelsey: Oh my God, girl. I wasn’t even thinking time. But you’re so right.
Lauren: This is like your “I’m a white lady with short hair and I want to speak to your manager.”
Kelsey: Exactly! I didn’t even think. I’m so used to our lives being mostly about doctors’ appointments, that I didn’t even think about that. That is another thing … I freelance and I have a calendar that I control, so I definitely don’t take for granted that I have the ability to just go to the doctor in the middle of the day on a Tuesday. But maybe that is my second piece of advice. Number 2 is: Put yourself first in these scenarios. If you have to take the PTO, take the f*cking PTO or get your shift covered or whatever you can, because if you are not functioning you will not be able to do anything else. Put your mask on before you put it on your toddlers. Yada yada yada … the whole airplane analogy thing. And then number 1 is: Dress for …
Kelsey: Dress for comfort, not for fashion. Function over fashion. And that’s more applicable to daily life. How are you going to be the most comfortable in every appointment, job, anything that you have to do that day? Put your illness first. That can be, like, oh, that sucks. But I think if you incorporate it as a positive thing, I think you will be a lot happier. I love being able to leave at 7:30 instead of 9:30 because I have a flare-up. I take that to my advantage, and I found the good in it. And yes, some days I get frustrated that I couldn’t stay later to the party or whatever …
Lauren: Irish Goodbye that sh*t. You get the f*ck out when you need to!
Kelsey: Take advantage of being a Spoonie when you can. Binge the Netflix series before everyone else can finish it.
Find the positive, because I think it’s really easy to find the negatives about staying in bed all day.
But I think if you can try and spin it on the positive, and take it one day at a time … because if you think of things too macro, you will f*cking go crazy. So just try to think of it a day at a time.
Lauren: One of my really good friends who’s also been on the show, she actually has this trick … and I have to remind her about it every time she has a flare … she’ll text me, “I see the flare coming. What do I do?” And I’m, like, “Get your list of happy things.” And she literally has a list of sh*t to do when she’s stuck in bed and is feeling stir crazy or whatever. It’s, here are my favorite shows, or listen to this book on tape or to this album, whatever it is like. And so she keeps a sh*tty times happy list.
Kelsey: A Sh*tty Times Happy List!
Lauren: I just named it. But that’s exactly like you’re saying … do that. And I’m, like, hey, but if you do that, keep a list if you’re a type A like us.
Kelsey: Absolutely. I think the biggest shift of being someone that’s chronically in pain is mourning the person I was before. Mourning sounds so sad, like a funeral or some sh*t. But I think there’s also so much growth and opportunity to be had in the idea of letting something go. And again, I had to shift perspective on being, like:
How, mentally, do I wrap my fingers around the idea of this being a positive instead of a negative?
‘Because everyone else is fine, and everyone else’s life is perfect.’ And of course …
Lauren: Nobody’s is, guys! Despite what Instagram is trying to tell you.
Kelsey: And I’m guilty, guilty, guilty.
Lauren: We all are. All right. Last Top Three list is, Top Three Things that give you unbridled joy, that despite everything you’ve been through and lifestyle changes that you’ve made … like, you’ve been working on your fitness, you’re sober, you’ve been thinking about your diet, all this kind of thing … are there three things that you are completely unwilling to compromise on, despite the fact that that may trigger a flare? Hit me!
Kelsey: I will say, recently number 3 has been dark chocolate sea salt caramels in any form. So whether it be Trader Joe bars or the Ghirardelli chocolate squares, anything that is dark chocolate with sea salt in caramel? Yes is the answer. Number 2, I would say I don’t compromise on going to the mountains. I’ve loved to ski since I was a kid, and cold and travel can be huge triggers for people with facial pain, and I always, every year, try to get a mountain trip in — no matter how scared I am, no matter how much pain I am in,
I know that when I am flying down a mountain skiing at however many miles per hour I’m going, and I’m looking at the Appalachia … that I feel amazing.
Lauren: When the mountains call, you must go!
Kelsey: I must answer. I am Elsa, or something.
Lauren: (laughs) Or Olaf, maybe!
Kelsey: Certainly Olaf, with the round face!
Lauren: I was thinking more being cold and snowy!
Kelsey: Oh yeah, that too. I’ll go with the cute adorable button face. And then number one, I would say, is masturbating.
Lauren: Yeah, girl! You and Lara are the only two people who have talked about that!
Kelsey: I recommend… It sounds like a joke, and it sounds like I’m being crass, but I f*cking swear to God, when you are in pain or you’re having a panic attack or when you feel your mood or whatever, I will shut the f*cking door and go to town. And that is something … I am lucky, again, that I am so comfortable with my body to be able to do that … but, like, girl, just f*cking stick your hand in your goddamn pants next time you’re feeling a flare, and see what magic can happen.
Lauren: Just not in public! (laughs)
Kelsey: Yeah, but you know what, have you ever been driving your car …
Lauren: (laughs) Strategic masturbation!
Kelsey: Strategic, but still not fully in public. Like, I’m not in public with anyone with my cooch… but I will say, a random hand down the pants on the highway, listen …
Lauren: We can handle it!!
Kelsey: Don’t knock it till you try it.
Lauren: It’s interesting you say that, too, because that just plays out the dichotomy of pain and pleasure. That your body is capable of total debilitating pain, and then the kind of pleasure that makes your whole body shake.
Lauren: You’re reminding yourself that your body is capable of feeling that.
Kelsey: Yes!! Oh my God, you just f*cking therap-ized that so hard!! That’s what it is, totally!
Lauren: It’s f*cjing endorphins and dopamine. It’s all the chemicals that are being produced when you do that, too.
And you know what, when you are in your f*cking fetal position on the floor day, I don’t give a sh*t what your crutch is. I don’t judge. I don’t f*cking judge. I don’t care what it is. Do it. Do what you gotta do to make yourself feel good.
Lauren: And it could also be sex, it doesn’t have to be masturbation.
Kelsey: Or order a piece of pizza, yeah!
Lauren: Time for pizza and a dildo! (laughs)
Kelsey: That pizza and a dick!! I love that.
Lauren: That’s really the perfect place for us to end! It’s been such a pleasure to have you on the show, Kelsey.
Kelsey: This is great. And you’re gonna come on Confidently Insecure!
Lauren: Yes, I am. I’m so excited. Thank you so much for being on the show!
Kelsey: Thank you!