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Are We Out of the Woods Yet? Taylor Swift Songs that Capture the Chronic Illness Experience

11 months ago
88 min read
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Drop everything now – it’s time to do a deep dive into how Taylor Swift’s music helps us cope with chronic illness! In this episode, I discuss the major themes in Taylor Swift’s music that relate to the chronic illness experience. I include everything from the “Haunting” experience of a medication not working anymore to grappling with my “Anti Heroic” immune system to the constant question of “Are We Out of the Woods yet?” when I encounter a flare up or unexpected roadblock.

I weave my own experience with rheumatoid arthritis and anxiety with listener contributions, then conclude by exploring the “State of Grace” I experienced after connecting online with the chronic illness community. After sharing my favorite Taylor Swift songs for chronic illness, I share how I’ve learned to accept what’s out of my control and the empowerment that comes from acknowledging: “Long Story Short, I Survived.” 

Video of Conversation

Episode at a glance: Taylor Swift Songs for Chronic Illness

I grouped my favorite Taylor Swift songs for chronic illness into eleven main themes, each represented by one of Taylor Swift’s song titles or lyrics. They are roughly in order chronologically of the chronic illness experience, from initial diagnosis / relief to the roller coaster of ups and downs as your condition changes over time.

  • Theme 1: “Enchanted” – Validation, hope, and getting your diagnosis.
  • Theme 2: “Sparks Fly” – Remission & when things are going well.
  • Theme 3: “Haunted” – The first flare up after a remission: the roller coaster begins.
  • Theme 4: “This is me Trying” – navigating social effects of chronic, invisible illness.
  • Theme 5: “Death by a Thousand Cuts” – coping with external barriers including healthcare systems.
  • Theme 6: “I’m the Problem” – coping with autoimmunity and the repercussions of my own actions.
  • Theme 7: “Are we out of the Woods?” Coping with Uncertainty;
  • Theme 8: “When I was Drowning That’s when I could Finally Breathe” – allowing myself to feel my feelings and accept uncertainty rather than fight it.
  • Theme 9: “Look What you Made Me Do” – finding my voice and becoming an advocate.
  • Theme 10: “State of Grace” – Connecting with Supportive Chronic Illness Communities.
  • Theme 11: “Long Story Short I Survived” – acceptance and self compassion; arriving at a tenuous new hope that I can weather whatever chronic illness storms come my way.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bio:

Cheryl Crow: Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. Learn more about Cheryl’s story and professional accomplishments here.

Full Episode Transcript:

Cheryl Crow:

Hi, I am so excited to delve into this topic today. It’s going to be a little different than our typical episodes. Today I’m going to be talking all about how Taylor Swift’s music relates to the chronic illness experience, my experience specifically as well as numerous listener voicemails and contributions online.

 So this is just, for me, this is a dream topic because it’s kind of the combination of two things that I independently love talking about and I’m making their Venn diagrams overlap, which is I love talking about Taylor Swift’s music and deconstructing her lyrics and nerding out about that. And I love talking about the ways that we cope with our chronic illness, the ways that we find meaning in it, and the ways that we can help live a good life with it. And so being able to talk about those things through the lens of her music is really, really exciting to me as a longtime fan.

So just as a quick introduction for those of you who hopefully, even if you’re not a huge fan of her music historically, I do think that this is still going to be an interesting episode to you because really whether or not you like the way that the lyrics are conveyed through music, she really talks about a lot of universal themes, and the one that relates for me the most to the chronic illness experience is wanting something you don’t have. It comes if you distill it down, I want this, I want X, I don’t have it. How am I going to get it?

 And then if it’s, I want my health to be better and it’s not better, I either need to figure out how to make it better or how to cope with it being chronic and not ever getting completely better, right? In the same way.

Maybe her song might be about wanting someone to like you back that you like and wanting to be in a dating relationship, but it’s still that sense of yearning. For me at least it’s the same whether it’s about wanting a new job, wanting a new body, wanting a boyfriend. There’s just that sense of yearning, that sense of desire.

And then there’s also conversely at times that sense of getting what you thought you wanted and having it maybe not be what you thought or what you hoped. So she wants something, she doesn’t have it, and she has feelings about that and feelings she’s entitled to as a human being and she conveys that sense of, I keep saying the word yearning because it really is that sense of sense of tenuous hope when you get what you wanted, hoping that it will last. And there’s just a lot that I relate to in that and in today’s episode, as I mentioned earlier, I did have people call in and send their listener voicemails for which songs from Taylor Swift’s catalog do you relate to due to your chronic illness or which songs help you cope with your chronic illness.

I think a lot of us use music as a coping mechanism, whether that’s for a short-term distraction or that’s for feeling like we’re not alone in a moment that might be difficult realizing other people have been through difficult things too. And so I’m going to be weaving in and out those listener responses to my own thoughts.

I’m just going to explain to you how this is going to be organized because Taylor is a very prolific artist. She has 10 albums plus a lot of other one-off songs she’s done for movie soundtracks, stuff like that. And she’s also rerecorded, some of her albums included songs from the Vault. So instead of going through her albums chronologically, I’m going to be going by theme loosely organized chronologically through the chronic illness experience. So starting with your initial diagnosis, and maybe I’m going to go through what happened to me, which was initial diagnosis and then remission, disease being well controlled, and then the roller coaster of the ups and downs, flare ups and remissions to this long-term, understanding that this is actually chronic and having to accept that and that, long story short, it can be a hard time, but we can survive.

That’s a little clue as to one of the songs that we’re going to be talking about. So there’s going to be 11 total themes, which is my lucky number, initially I was going to do 13 themes, but I wanted to condense it down. And then this episode is going to be number 113, which if you’re a Taylor Swift Swift fan, that’s her favorite number, and I will be at times playing little snippets of her songs, but not from her actual original recordings because if you know anything about her, she’s very serious about music ownership rights, and I never want to break any copyright laws. So I will be playing occasional audio clips from videos that fans have taken at her concerts, including some of my own.

So before I get started on our first theme, I did want to share a voicemail from Chris Shepherd. He is a Room to Thrive support group graduate, and he had a really interesting, I thought, reflection on what is the role of music in our chronic illness journey. So let’s listen to that.

Chris Shephard:

Thanks Cheryl for this amazing first prompt for the Arthritis Life Podcast. It’s such a great thing to get everybody’s voice on here, and of course, you’ll sample through our rumblings and our ramblings and our ruminations and pick our voices out. But I think that there’s something really neat that you’re going to be able to incorporate all these different voices into one episode in the same way that all different people can be in a room listening to a concert at the same time, or millions, billions of us around the planet can be listening to the same song at different times. I certainly think music plays a key role in our healing and our community in Rheum to THRIVE. And just across the health advocacy and peer-to-peer support space, it’s something that we can always do in a moment to give ourselves a boost. No matter if things are going great or things are going poorly, there’s rarely that moment that you can’t add some music and have things go a little better.

Cheryl Crow:

I really, really appreciated Chris’s thoughtfulness and reflections. And so I’m going to go ahead and get started with our first theme of 11, which is the validation, the relief, getting your diagnosis. So I’m calling this theme Enchanted, which is the title of one of her songs. I’m going to play a little clip from Enchanted one of the live versions.

So Enchanted, it’s a very sweet, very simple song. I relate it to that experience of getting your diagnosis because for me, I had been very medically gaslit, as I have mentioned numerous times on the podcast before, and so it was truly a knocked me off my feet positive experience to have a doctor that looked at me and validated me and said, no, you actually have something wrong. You have an autoimmune disease. I believe you. I’m listening to you. I’m sitting here like, oh my gosh, yes, I will follow you wherever you go.

The lyrics on here, ” this night is sparkling, don’t you Let it go? And I’m Wonderstruck dancing all the way home.” It just goes to that feeling of, I talked earlier about a lot of her songs are about yearning for something, wanting it, not getting it. Then in this case, it’s actually I, I’m feel this happy bubbly feeling, even though technically in the song she didn’t actually get with the person.

So I think it just, again, it captures that hopefulness, that optimism, that excitement in when you get that validation of your diagnosis. Enchanted, I meant to say, is from Speak Now, her third album, King in My Heart is from her sixth album Reputation. I love this song and I had the good fortune of seeing it live in Seattle back in, I don’t even know, 2017 or something like that.

And there’s a part, this is actually one of my very first tiktoks I ever made, is there’s a part where she goes, is this the end of all the endings? My broken bones are mending with all these nights we’re spending. Now in this case, she’s using broken bones like metaphorically, but in the case of getting your diagnosis, it’s another song I relate to because it’s like, is this the end of all the endings? I went to all these other doctors, they all blew me off.

They all said I was just anxious, not sick. And so is this the end Getting a diagnosis in some ways is the end of these endings of the other relationships with doctors that didn’t go well, and they were all dead end to play on words of the word ending. And so saying, wow, I’ve reached this thing, I reached this diagnosis. Now at the time, all I wanted was a diagnosis and treatment plan. Of course, as we age and things change, you, then you change what you wanted right now, once I got my diagnosis, pretty soon I changed the benchmark of what I wanted, that I wanted something more. But for that brief moment, those brief weeks after my diagnosis, that sense of hope was just really beautiful.

The third song, there’s just three for this theme, is Holy Ground, which is a real fan favorite. I would say I’m really a lyrics person. As you will find when you’re listening to this episode or watching it on YouTube, I will deconstruct lyrics all day long. I’m actually going to have to hold myself back. So this episode isn’t nine hours long, but Holy Ground is actually one where I think it’s just the overall vibe of the song that really captures that hope and optimism in the early days for me. So I’m going to play you a little clip of Holy Ground, which is from her fourth album, red.

So I feel like that’s a very innocent stage, not to have a foreshadow for a future song, but there’s a future song called Innocent and it’s an enchanting. It’s a beautiful time. For me at least it was getting my initial diagnosis and now for other people it was traumatic and it just goes to show that we all have different experiences.

So theme two is going to be another kind of positive happy note, enjoy these while they are here. The rest of them are more up and down, but theme two is Sparks Fly When for me, it was during my medicated remission. So when we figured out how to manage my rheumatoid arthritis and my anxiety through medication, things were going well, and I was in what’s called medicated remission for rheumatoid arthritis. So I had no joint swelling, no joint pain, no warning, stiffness. My blood markers were looking really good, and I was like, this is good.

I kind of thought it was going to last forever. Unfortunately that didn’t end up happening, but let’s just go into that stage while we’re here. So Sparks Fly is a song that Taylor Swift wrote on her third album, speak Now, and it’s just really, really sweet. I’m not going to play clips of every single song again, it would take too long, but it just talks about a honeymoon phase in a relationship. It’s like the little refrain that keeps coming back is “drop everything now, meet me in the pouring rain, ” which being someone from Seattle, I relate to that on a literal level, but also it’s like you just get that impulsive stage where you’re like, this is great again, you believe it’s going to last forever and you’re happy. So the other song I really relate to that in those earlier stages is I forgot that You existed. So that’s the first track on Lover Her seventh album, and it just goes, I forgot that you existed.

And for me it’s kind of about you’re feeling so good that you almost forget about all the bad times. In this case, I had two really bad years that preceded my rheumatoid arthritis diagnosis, and once I started getting treated and was feeling better, I just didn’t even want to think about those bad times anymore. I almost forgot that they existed. This is kind of what I thought when I first got diagnosed. This would be the whole journey. I got my diagnosis, yay, sparks fly. I’m in a good treatment plan. Yay. And that does happen to some people, but the majority of us end up having an up and down experience. We go through flareups and remissions, flareups and remissions in a chronic fashion, and that’s why it’s considered a chronic illness.

 So theme three is I put under the umbrella of the Taylor Swift song Haunted, which is a song she wrote on Speak Now her third album.

The other way I would describe this theme is I had it and then I lost it. What happened? It’s about having something. You finally got what you wanted and then it is gone and you don’t know why or how or how to get it back. And for me, that’s about my chronic illness experience. Let’s go listen to a little clip of haunted from the Speak Now tour. So some of us fans will like to call this baby Taylor. This was back when she was still, I believe, either a teenager or in her very early twenties.

MUSIC: “Come on come on don’t leave me like this, I thought I had you figured out, something’s gone terribly wrong you’re all I wanted, come on come on don’t leave me like this I thought I Had you figured out, can’t breathe whenever you’re gone, can’t turn back now I’m haunted.”

You absolutely must watch this video clip of her singing Haunted on her concert. It is the most dramatic thing I’ve ever seen and I love it most dramatic thing until the Don’t Blame Me, Look What you Made Me Do transition on the Eras Tour, of course.

But anyway, back to this song. So to look at it from a lyrics perspective, she says, come on, come on, don’t leave me like this. I thought I had you figured out. That is a part that I really relate to because that’s what it’s like having a chronic illness, at least for me and many people in my Rheum to THRIVE Support groups. You figure it out, you figure out what your triggers are and then your body changes. It’s actually a lot like parenting. We were talking about that the other day in one of the support groups where it’s like you’re like, okay, I figure it out how to get my baby to go to sleep, and then your baby changes.

They go through a sleep regression or something like that. It’s the same with your relationship to your body. So for me, I feel this sense of haunting a lot. I’m haunted by this constant background noise of, well, if I had done this X, Y, Z, if I had slept better, if I had eaten better, if I had exercised more, would this flareup have not occurred or is this just one of those flareups of pain and fatigue that was just destined to occur? I like to joke, a butterfly flapped its wings in Asia and then I get a flare up. Sometimes the flare-ups are completely out of your control in random. Other times there’s something where you can determine a specific trigger that is under your control and prevent the flare up in the future. And at the end of the day, it’s often hard to distinguish which flareups are witch, especially when you haven’t done anything really extreme in an everyday basis.

There’s always so many factors swirling around. It’s just this haunting feeling of why did this happen? And there’s also on a more meta level, A, why did this condition happen to me trying to make sense of something that’s inherently senseless. So I would say the first stage of this theme three is Haunted. The first stage of being haunted is just the shock, the shock and the desperation of like, no, no, no, no, no, no, no, no, no, no. I had this figured out, Come back!

 I often say it’s like the definition of insanity is doing the same thing and expecting a different result, but also it makes you feel insane to do the same thing, get a different result. So I took my medicine plus lifestyle, got remission, and then I did the same exact medicine, same exact lifestyle. Now I’m in a flare up.

This doesn’t make sense. So trying to make sense of it in that pain and desperation is kind of that first stage. The second stage is anger like, okay, well regardless of why this happened, now I realize it’s happening. This is happening. I’m flaring and I’m not happy about this. So I think the song also from Speak Now, the story of us, the lyric that they keep coming back to, that she keeps coming back to is the story of us looks a lot like a tragedy now. And so that to me, it’s like to put really simply my experience with my first medication I took that put me into that medicated remission. That was the love story. This is it. This is my happy ever after. I’m just going to take this medicine the rest of my life and do the things I could do with my lifestyle.

Again, managing stress and exercise and stuff like that. This is my plan. I have a plan, it’s working. I’m going to keep doing this. I got it. I have this under control. That’s my love story with my first medication. And then the story of us is when that love story does not have the happy ending, then you have to contend with that anger and be like, why did this happen? The third stage is sadness, like, okay, this condition in my case is not going to be as simple to manage this as I thought. And I’m sad about that, allowing myself to have my feelings. I absolutely love the song Right Where You Left Me, which is actually a bonus track from Evermore, which is her ninth album, the last one before Midnights. It’s her second pandemic album In the case of chronic illness, I relate to it because it talks about being frozen in time and she says, did you ever hear about the girl who got frozen?

Time went on for everybody else? She won’t know it. She’s still 23 inside her fantasy how it was supposed to be. And again, I think in the song it’s probably meant to be interpreted as maybe a love story that went wrong where she’s supposed to end up with this person. They’re supposed to have their happily ever after. And in the case of my health issues, it’s like I was 21 when I was diagnosed 21 and let’s just say 21, she’s still 21 inside her fantasy is how it was supposed to be. Okay, it doesn’t rhyme, but I had my life planned out. I was athletic, I was on the soccer team. I was taking care of myself. I never did drugs or smoked or anything, and this is how it’s supposed to be. Good things happened to good people. Now I’m saying that that was what I felt at the time, that this was a just world.

The “just world hypothesis” is “good things happen to good people, bad things happen to bad people.” I was operating under this assumption that if I did good things, my body treated my body like a machine. I often thought of my body like a machine. I was an athlete and I was feeding my body good fuel and I was running around and getting strong and I just felt, this is okay. This is going to go great. Three of my four grandparents lived to their nineties, 94, all three of them. So I’m like, this is going to be my life. And then getting diagnosed with a chronic condition that’s associated with a reduction in lifespan was really sad. And I think it’s something that I didn’t really allow myself to grieve at first. I was think operating under a sense of toxic positivity like, well, at least I can do this and at least I can do that.

And it’s true that I can balance gratitude for what I still have with I can feel grateful for what I still have, but I don’t want to use that gratitude in a sense of or in a way that smothers my ability to process the negative feelings or the uncomfortable feelings like sadness.

So stage four of this haunting is the yearning for resolution, yearning, wanting that black and white answer. I absolutely adore the song Epiphany, which I was so I was shocked to learn Epiphany. It’s from Folklore, her eighth album, the first one in The Pandemic. I was shocked when I learned that that was a lot of people’s least favorite song. I think I really recommend, if you’re interested in it, listen to the version on the album. There’s something about the instrumentation. I’m a lyrics person in many ways, as you’ll see in how I’m talking about these songs. But I do respond to the vibes of the song. I don’t have the language, the musical know-how to describe Why that song. It does something to my brainwaves. It makes me relaxed to hear that song. It really captures that yearning. It seems weird to be relaxed and yearning at the same time, but somehow it works for me. We’re going to listen to a little clip of Epiphany, the version from the Long Pond Studio Sessions, a live recording she did

Speaker 3:

MUSIC: “Only 20 minutes to sleep, but you dream of song, just one single glimpse of relief to make some sense of what you’ve seen. “

Cheryl Crow:

So that’s just a very beautiful song and that part we know only 20 minutes to sleep, but you dream of some epiphany, just a single glimpse of relief to make some sense of what you’ve seen. I think that’s really a stage where you’re, you’re yearning for a resolution. You’re yearning for the black and white answer for the certainty of how to cope with your condition, how to control your inflammation, control your autoimmune disease and epiphany. We’ll never know exactly what Taylor’s songs are actually written about. I think she is obviously an artist whose art was like most artists is meant to be interpreted in different ways by the observer of the art. But I think there are many- in the song Epiphany, which came out again during the pandemic, there are some strong analogies to specifically, it’s probably the first song we’re talking about that has lyrics that relate directly to chronic illness or acute illness.

She says “something Med school did not cover someone’s daughter, someone’s mother, hold your hand through plastic now, doc I think she’s crashing out ,and some things you just can’t speak about.” And we know that, we as the fans know that her mom had brain cancer, and so it’s potentially that she is drawing an analogy to that or processing that experience or trying to depict experience many people had during the pandemic and have to this day with loving someone through really serious illness.

So that part, only 20 minutes to sleep, but you dream of some epiphany, just one single glimpses of relief to make some sense of what you’ve seen. It’s like to make some sense, again, this yearning I have of, well, I’m waiting for myself to experience – I’m waiting for the epiphany of it all. Makes sense now. This is why I got rheumatoid arthritis and this is how I can manage it.

And eventually we’re going to get to the point where we accept that there is no black and white. There is no, but at this stage we’re not accepting that yet. We’re trying, we’re yearning for it. So in the same way the song “Hits Different,” which is like, I don’t even know what we’d consider that, like a bonus kind of late bonus track for Lover where she says, “I trace the evidence, make it make some sense why the wound is still bleeding.” It’s such a great, great bridge. She’s the queen of bridges and that’s a great kind of yearning, “trac the evidence, make it make some sense.” A lot of us, we have to find this balance. We want to track our symptoms, we want to find patterns, and we talk about this a lot in my Rheum to THRIVE education program and support group where it is a helpful tool to track your symptoms, to find patterns, but also there is going to be a point where you cannot have complete certainty in most cases.

So we have to be able to cope with that. The same thing, there’s just really cute song “Come back, be here. Like, “I guess you’re in London today, I don’t want to miss you this way. Come back, be here. “Oh God, I cannot sing. My name’s Cheryl Crow and people are always asking to sing and it’s like this, I have all these other talents. I can dance, I can play sports, I can do all these things, but singing is not my best talent. But I do sing all the time. I do like singing, but it’s not, I can tell my voice is not the most beautiful. So I’m not fishing for compliments, I’m just saying.

So the “Come Back, be here” is just very, very literally talking about wanting something back, right? Wanting something back that you used to have. And that is an experience a lot of us have with chronic illness.

Either wanting our first remission back, wanting a stage of our life where our condition was easier to manage, wanting that back or wanting our health, our pre illness body back.

So we are now on theme four, which is: “This is Me Trying,” which is about the alienation or the social effects, feeling alone, feeling like people don’t understand you. That is so common for people with chronic illness, especially invisible illness, things that people can’t tell from the outside what you’re going through.

So the first part of this, the first sub theme that I’ve grouped, I’ve grouped the songs into little sub themes and themes because otherwise I would just be rambling all day, is friends not understanding and that’s unfortunately, friends are family not understanding I should say. And that’s something that comes up a lot.

In our first listener email, Cindy wrote that this is me trying, it was something she related to that she wishes her friends understood that what she’s doing right now is trying. It’s almost like you don’t get, people often say people with chronic illness say, we’re not faking being sick, we’re faking being well meaning it takes a lot of energy to appear normal when you are as sick as many people are with autoimmune diseases. So the song this is Me Trying is from Folklore her Taylor Swift’s eighth album and it is about this. So let’s listen to a little bit of the chorus of this Is Me Trying, this is from a fan that videoed it at the Eras Tour.

MUSIC: “Maybe I don’t quite know what to say but I’m here in your doorway and I just wanted you to know that this is me trying, I just wanted you to know that this is me trying.”

Oh, that’s such a beautiful song and I think a lot of us who have chronic illness feel like we wish that the people in our lives knew that this is me trying. This is not, if I ask for an accommodation, this is not me asking for special treatment. This is me asking for equitable treatment to bring my experience to the level of someone else who doesn’t have my condition. We’re not asking for favors, we’re just asking to be treated in the way that is required for our bodies.

And I think that’s just hard to feel, a lot of people don’t feel like they’re being given the benefit of the doubt. To be a hundred percent honest, I feel very lucky. That hasn’t been my personal experiences a lot, but definitely after facilitating hundreds of people in the support groups over the last four years, it’s definitely the norm.

The other listener contribution here is a text-based response from Megan. She wrote that she really likes the song “II Did Something Bad,” which I love that song too from Reputation, and this is what she wrote about what that song means to her.

She says, “A Taylor Swift song that helps me cope with chronic illness is I did something bad. I guess it’s reverse psychology of how many uneducated or just ignorant people in general tell us not to take the scary meds or try to convince us which treatments we should take for our health. And they think that what we are doing is wrong. It’s kind of like we know what we’re doing is right for us and our bodies and our health. We are the one dealing with the symptoms flares and side effects regardless of what other people say.”

 So I love that. I also think just on a very basic note, the song “Mean” from Speak Now, that’s one where she goes, someday I’ll be living in a big old city and all you are ever going to be is mean. That really relates to societal ableism. Now I think it’s a little bit of a tongue in cheek song. I mean of course I would hope that through education, people in society would be able to overcome their ableism and be better. Know better do better.

So the song mean is technically saying All you’re ever going to be no matter what You’re going to be mean. But it’s that feeling of processing their frustration and disappointment in other people not being as kind and empathetic as we wish they would be.

The other social effect I want to address through Taylor Swift’s songs is trying to fit in or masking, which is where you try to appear so that you’ll fit in with your peers.

It happens a lot with younger people especially. There’s a song called Mirrorball that’s really sweet and really barely bittersweet I should say. And she says, “I want you to know that I’m a mirror ball. I can change everything about me to fit in. I’m still on that trapeze. I’m still trying everything to keep you looking at me. “

And I think that’s just something that again, a lot of people with chronic illness can relate to. Maybe you’re changing what part of the mirror ball is showing to others so that you’re hiding what you’re really going through. You don’t want to have to explain it one more time. I also find a really interesting article on the website, the Mighty by somebody who has juvenile idiopathic arthritis. She was writing that She Loves the song by Taylor Swift, tied together with a smile. Her name is Chelsea Gilchrist.

She says with Tied Together with a Smile when she heard ti together with a smile, she remembers “being 13 years old and thinking, holy crap, I am not alone. Someone gets it. From that day on, I have been the biggest Taylor Swift supporter I can be and she continues to help me through my worst days by putting into words things I never could. “

The song is so sweet, but in the song she goes,” hold on baby, you are losing it. The water’s high. You’re jumping into in it basically say letting it go and no one knows that you cry, but you don’t tell anyone that you might not be the golden one and you’re tied together with a smile, but you’re coming undone.”

 So it’s talking about again, trying to put on a brave face, a happy face. This happens a lot with younger people like teens and kids with arthritis that are told you’re a warrior, you can be brave, you can do all these things and they get a lot of positive reinforcement when they appear to be brave and appear to be positive.

But deep down they’re wanting someone to recognize that this is painful. I can try to look at the bright side, but also I want my pain to be acknowledged. Two more things, two more sub themes of this theme.

Number four of the social effects are feeling like you’re not good enough. And this comes from internalized ableism. It also just comes from being human. I think it’s a pretty common experience to feel like we’re not enough for someone or fearing like you’re in a relationship and you’re afraid that person’s going to leave you for whatever reason or that you would love them more than they love you. And there is not a better song for this than the song “Tolerate It” by Taylor Swift, which is one of the most devastating perfect songs I’ve ever heard. And I am a happy person who loves sad songs. I dunno what it is, but I really love sad songs.

 And so this is a really sad, really devastating song that I listen to a lot and I see this happen a lot where people settle for less than what they deserve and because they’re afraid, no one else is going to love them through their difficulties. No one else is going to love you or put up put up with your health issues. So I’m going to play you a little clip from Tolerate It from the Eras Tour, the live version.

MUSIC: “I wait by the door like I’m just a kid, use my best colors for your portrait, lay the talbe with the fancy shit, and watch you Tolerate it. If it’s all in my head tell me now, tell me I’ve got it wrong somehow, I know my love should be celebrated by you tolerate it. When you were out building other words where was I? Where’s that man who threw blankets over my barbed wire.”

I know my love should be celebrated, but you tolerate it. It’s just the worst feeling in the world. The other song that I think relates to this topic is “Eyes Open,” which is what she sang, she wrote the song for the “Hunger Games” soundtrack a while ago, I think over 10 years ago.

And which says, “everybody’s waiting for you to break down. Everybody’s watching to see the fallout even when you’re sleeping, sleeping, keep your eyes open.” It’s kind of that feeling of the other shoe is about to drop and that your friends might be walking on eggshells around you. You feel like they’re walking on eggshells around you because of your chronic illness. And on the one hand it’s a complicated, these are all complicated feelings. You want your friends to understand what you’re going through and validate you and accommodate you, but you also don’t want to feel like that’s the only thing that they’re thinking about when it comes to you.

It’s complicated. That could be, that’s just the shortening of this whole episode to be it’s complicated.

So the last song I want to talk about, I love the song, it’s called Electric Touch. It was a vault track from the Speak Now Taylor’s version and I think it just related to trying to date, date at we someone with a disability, a part where she goes or just honestly just relates to just trying to date someone in general that kind of tenuous hope you have at the beginning of a relationship.

But I was thinking just it goes like I was thinking just one time, all it takes is to get it right just one time. They’re saying, I’ve sometimes tell people in the support group, you don’t need every single person in the world to understand your condition. You just need the people that are important to you too, right?

But you’re like, is there going be all I need is one person, all I need is one person to get it, but am I going to find that person? So that’s the end of theme four, which is again the social navigating the social effects of having a chronic illness and how Taylor Swift songs relate to that.

Theme five is called Death by a Thousand Cuts. That’s a song from Lover her seventh album. And this theme is about the confronting the external barriers and being frustrated at the forces outside of your control. So in the case of chronic illness, no surprise this is going to be about systemic issues you encounter, navigating healthcare systems, whether it’s in the United States where I live or other places and navigating health insurance in the United States specifically. So death by a thousand cuts talks about, that’s a phrase that means you keep getting these small injuries over and over and over again repeatedly and over time it kills you.

And in this case it’s not literally killing you. It could be actually in the American healthcare system, but also could be just killing your spirit and taking away some of your energy. So death by a thousand Cuts has a really great bridge. I’m going to play it for you now.

I think it just really, it’s like that, it really captures to me that compounding of all the things on top of each other, calling the insurance, calling, having to advocate for yourself every step of the way to get the care that you deserve and how exhausting that is, there’s also the sadness and anger that people have to process through these moral injuries. I’ve heard them called I think the song, dear John from Speak now, she talks about, don’t you think I was too young to be messed with? I feel like that feeling of I didn’t deserve this feels to me the same as having to confront these unethical, in my opinion, insurance barriers like fail first therapies where you have to first fail the cheaper drugs before the insurance companies will pay for the more expensive medications on a kind of more petty level from reputation, there’s a song called This is Why We Can’t Have Nice Things.

If we had less wealth disparity in the United States and less of a profit driven healthcare system, we could have nice things but we can’t because greedy.

So there’s also the Great War, it’s a bonus 3:00 AM track from the album midnights that she put out a couple years ago and there’s a part where she goes, “it turned into something bigger somewhere in the haze got a sense I’ve been betrayed.”

 So being betrayed, I’m betrayed by the system not treating me very fairly. So there’s a part in the song where she also goes, “there’s no morning glory. It was war, it wasn’t fair.” So just kind of having to slowly over time accept this just the way it is.

Alright, so theme six is “It’s Me, Hi, I’m the problem, it’s me.” This was actually one that a lot of the listener voicemails and contributions on social media we’re pointing to that is aligned from Anti-Hero, the song from Midnights.

So this is where we are, through Taylor Swift songs, coping with the fact that with an autoimmune disease it is your body, me that is the problem actually your own immune cells are going rogue and attacking your previously healthy joints and to other tissues in your body systemically in the case of inflammatory arthritis. And it’s really a strange feeling.

I had a Twitter comment from Dr. Cuo Ghi Edens. She said, she also relates the song to prednisone. It’s me, hi, the problem with me. So I think she’s talking about how a lot of people talk about prednisone being definitely a necessary evil at times. It has so many positive effects on inflammation but also can have a lot of side effects that are difficulty sleeping, agitation, quote on quote “roid rage,” anxiety.

Also on Twitter, Katie is the illest said same, it’s me. Hi, I’m the problem. It’s me related to having a chronic illness. And so I’m also going to include here a voicemail from Chris who is talking about what the anti-hero means to him in a very thoughtful way.

Chris Shephard:

I chose anti-hero. I’m sure a lot of people chose that song and I had to Google anti-Hero and realize it’s not a villain, it’s an unconventional hero, which I think we could say is potentially shorthand for a disabled person or any kind of minority or alternative perspective. And I think when she asked the question, it must be exhausting, always rooting for the anti-hero, I hear two sides to that question. One side is the world’s made for heroes. It’s not made for, not for people who are different, for disabled people. And so it is exhausting, but I also hear a second question in there to sort of say, hey, there are things that sometimes we do for ourselves to ourselves that are exhausting and sometimes we ourselves are being the anti-hero in this way that we’re choosing to be quirky and choosing to buck the system whatever it is.

And sometimes it can be kind of freeing and empowering to be like, you know what? I’m going to stop fighting for a moment and just be a regular hero and not have to be this funky, crazy cool Taylor anti hero. But I think probably a lot of people hear that song and think it’s anti-heroes villain, but it’s not a villain, it’s another kind of heroes. Last spring when we concluded our Rheum to THRIVE course and I rewrote the song lyrics to, I thought it would be a fun thing for us to think about and sing about changing it from anti-hero to anti-inflammation. It must be exhausting, rooting for the anti-inflammation, which is what we are doing, those of us with autoimmune disease. But it turns out, according to Google, you’ve been thinking about this song quite a lot.

Cheryl Crow:

Another song on the same lines of Anti-hero and it’s me hi i’m the problem, it’s me is also Bad blood. So on Instagram bz map M1 23 said, “my son and I both agree Bad blood by Taylor Swift because we have bad blood with our arthritis. “

So I think they are talking about how you have have rogue cells in your own body and along the same line of I’m the problem, it’s me. Something that happens sometimes with a chronic ongoing illness is that we have to live with the consequences of our own actions. Sometimes we know the the right thing to do for our body and we don’t do it because either something else is more important or we just make a mistake or we are maybe being a little bit Lulu as the kids say delusional thinking that, oh, that’s fine, I’ll go on a four mile hike.

That happened to me a couple of years ago and I was like, what am I doing? This is going to cause a huge flare up so they regret we might feel when maybe we made a bad choice and maybe we are part of the problem.

I like the song Gold Rush from Evermore and she has just some absolutely beautiful poetic lyrics in Gold Rush. But one of them is “I don’t like that falling feels like flying till the Bone Crush, which is the chorus is like, I don’t like a gold rush gold rush.”

 So she’s talking about how in this case she’s talking about I think falling in love and how falling feels like flying until the bone crush, is so beautiful. It feels great until the consequence comes in, which is the case of falling. You hit the ground and then in the case of maybe sometimes we choose with chronic illness to just live your life for a little bit and pretend that you don’t have your illness, maybe pretend that you don’t have those limitations and then you eventually suffer the consequence.

Another one, I think the song “The Archer” is really stunning and beautiful. I think the heartbeat part of it is absolutely gorgeous and the line in the archer is that” I’ve been the archer, I’ve been the prey who could ever leave me darling who could stay,” so that actually who could leave me, who could stay relates to relationships and stuff, but I’ve been the archer, I’ve been the prey kind of makes me think about how my own body is the problem, but it’s also the cure eventually, hopefully it’ll be the thing that reaches homeostasis.

And also the archer kind of relates to this tenuous hope of will someone stay with you through all the ups and downs. So again, that kind of goes in both categories, the social category theme four, but also thing six.

So the next theme is theme seven, which is actually the title, part of the title, the inspiration for the title of this episode 113 is Are We Out of the Woods? So this theme of living with chronic illness is coping with uncertainty. The fact that we are going to have a roller coaster of hope and let down good and bad and to learning how to ride those ups and downs rather than fighting them is a skill that takes a long time. So are we out of the woods yet? I’m going to play you a quick snippet of the song. It is from her fifth album, 1989.

MUSIC: “Remember when you hit the breaks too soon? 20 stitches in a hospital room, when you started crying I did too. When you started crying baby I did too but when the sun came up I was looking at you, Remember when you couldn’t take the heat I walked out I said i’m setting you free, but the monsters turned out to be just trees, when the sun came up you were looking at me.”

That was a live version of Out of the Woods where she, well, she was actually singing Is It Over Now from the 1989 Vault tracks, but she mashed it up out of the woods.

 So it’s interesting, I actually found a blog post I had written in 2015. I remembered writing this. It was my chronic illness playlist on theenthusiastic life.com blog, but I talked about how Out of the Woods really resonates with me as a kind of chronic illness anthem because it’s a constant question in the back of my head, are we out of the woods? Is the worst behind me? Was that the worst I’ll ever have to go through or is it going to get worse again? This is what I wrote in the 2015, 2015 Cheryl, which is almost 10 years ago. It’s a constant question, are my hopes too high or low?

Is this as good as it gets? Many people with chronic illness can identify with the repetitive pulsing question, are we out of the woods yet? One of the hardest aspects for me to manage about rheumatoid arthritis is not knowing what I’m truly out of the woods. Even if my medication is working, I don’t know whether or when it will stop. Many of the most effective biologic medications work well for a few years and then the body’s immune system adapts to them and you have to try another one. This has happened to me once already. Well, that was in 2015. Now I’m on my fifth biologic, so it’s happened more. So are we out of the woods yet? Are we out of the woods yet? It’s a very repetitive song lyric wise, but it’s because it captures that kind of frantic background noise in your head when you live with a chronic illness.

And then “Is it Over Now?” is a kind of a sister song, not only chord wise and lyric wise, but it’s “Is it Over Now?” is a song she wrote around the same timeframe but didn’t release until this year, which is saying, is it over when she’s talking about a relationship, I presume that’s how I interpret the lyrics, that there’s an on ag- again, off again relationship that’s up and down, up and down. And at some point you realize you didn’t know when it was actually over until you have many years of retrospect is kind of how I see it.

 But so the uncertainty of chronic illness can be this similar where you’re not – some people have asked me, well, how do you even know if you’re in a flareup? I mean, first of all, it depends on how you define flare-ups. Some people define it as a short period of worsening of symptoms.

Other people would define it as longer. But if I’m thinking about am I in a flare-up that’s going to be bad enough to where I need to change my medications, it’s usually not clear in the first couple weeks. It’s clear as time goes on. If the trajectory continues getting to be worse over time, then I know I’m in a sustained flareup. But at the time when it’s happening to me, I don’t know whether that’s just going to be a little blip, like a little day or one week long blip of worsening symptoms. That then comes back to my quote normal.

So long story short, we have a lot of uncertainty. We have to cope with another sub theme to this theme seven of am I “Out of the woods,” is realizing that there are things that are going to be out of your control. Like I mentioned earlier, sometimes you do everything and you still flare up.

You still get pain or fatigue and hoping with the fact that you wish it was more in your control. There’s that cute song she has called, “If This was a Movie,” come Back, come Back to Me like this were a movie and saying we have these archetypes or these stories we grew up reading and listening to and watching and in the movies, it’s like the hero overcomes the obstacle. And so it’s kind of like that “just world hypothesis” I talked about earlier. If I could, if this was a movie, I would conquer my rheumatoid arthritis, but it’s not in the same way.

There’s also the song White Horse from Fearless where she says, “I’m not a princess, this ain’t a fairytale.” It’s like realizing that you’re not -you’re in real life, you’re not in a fairytale. And that can be uncomfortable, not surprisingly to have to accept or not even just accept, just confront.

The next theme is bracing yourself for pain at the first sign of a flareup or maybe trying to reassure yourself if you’re, again, you’re not really sure what part of the rollercoaster you’re on when you’re on it, but when you have a certain period of time, when you start feeling worse, you’re like, okay, this is going into a flareup. The song Exile. It’s a duet by the way.

And if there’s a line where she says, I think I’ve seen this film before and I didn’t like the ending. And that emphasizes again that this is a chronic up and down thing, so I’m going to play you a little clip of Exile.

MUSIC: “I think I’ve seen this film before and I didn’t like the ending, you’re not my homeland anymore, so what am I defending now? You were my town, now I’m in exile seeing you out. I think I’ve seen this film before so I’m leaving out the side door. So step right out, there is no amount of crying I can do for you, all this time, we always walked a very thin line, and you didn’t even hear me out, I gave so many signs, you never learned to read my mind, we couldn’t turn things around, but I gave so many.”

That song brings tears to my eyes, especially this version – it is a duet, but this version, she did solo in L.A. and it’s just so, the whole thing is absolutely beautiful. So the lyrics I relate to are not only the, I think I’ve seen this film before. I didn’t like the ending, but also “all this time we always walked a very thin line.” I really feel that. I feel like a lot of times those of us with chronic illness feel that way with our health. We’re walking this fine line between this is okay, I am okay, I’m functioning, where you kind of feel like you’re just on the hairy edge of it being too much for you to bear or too much to cope with.

So on the more serious, this is kind of getting into the more serious, somber sad songs. There’s an absolutely gorgeous one on Lover called “Soon You’ll Get Better.”

It’s about maybe kind of trying to reassure yourself that someone might get better or that you’ll yourself get better. Because of the time this was written, we know that her mom had cancer and that this song is kind of about saying, soon you’ll get better. You have to. It’s kind of a play on words of you’ll “get better soon, get better soon.”

I see this as trying to convince yourself that the person’s going to get better soon. But in the back of your head, being haunted by this idea that it might actually not get better. She says, “I know delusion when I see it in the mirror. You like the nicer nurses, you make the best of a bad deal. I just pretend it isn’t real.” And it’s just a really beautiful, beautiful song.

The other one is Afterglow, which is from Lover also. She says she’s wanting reassurance and wanting clarity from her Lover. And she knows she’s saying, “tell me, it’ll be just fine. Tell me, She’s like saying basically, lie to me, tell me it’s going to be okay.” And that’s kind of how we feel sometimes with having a chronic illness.

On the one hand, I work so hard on acceptance and accepting the ups and downs and the uncertainties, but sometimes I just want someone to tell me it’s going to be okay and that you’re going to get better.

There’s also on the other side, when you’re on that part of the roller coaster where things are starting to get better than your baseline, not like better as a permanent state, but they’ve been bad and now they’re not as bad. There’s this tenuous sense of hope. I think Taylor’s, that’s probably one of my favorite things about her lyricism in her songs, is that she captures that tenuous hope and that yearning and longing in her voice.

And there’s in the song “Ivy” from Evermore, one of my favorite albums, she talks about, “I live and Die for moments that we stole on begged and borrowed time. “There’s again this feeling when you have a chronic illness that whenever you have a good times, you’re on borrowed time because this other shoe might drop at any moment.

 And she talks about “my pain fits in the palm of your freezing hand,” I just think that’s really beautiful imagery. “I can’t stop you putting roots in my dream land, my House of Stone, your ivy grows and now I’m covered in you,” it’s so beautiful. It’s about, I think the song taken literally is about: she’s in a relationship with someone and that person is putting roots in her dreamland. And she maybe used to be stony. She used to be have her walls closed off and now the ivy’s growing over her and she’s covered in this person.

But I also think that hope can be like that when you’re starting to feel a little better and you’re like, Ooh. It’s like I kind of was resigned to this difficult state with my health, but now the hope is growing over my house, like Ivy.

Another song along the lines of tenuous hope would be “Dancing with our Hands Tied.” That’s just a beautiful image to start off with, but she’s talking about a relationship where you’re still dancing, still enjoying it even though you know that there’s something fundamentally wrong in the situation. Our hands are tied, but we’re still going to try to dance. I wrote down in my notes for this song, trying to enjoy the good times despite a sense of dread in the pit of your stomach and also maybe “Delicate.”

 The song Delicate is to me all about uncertainty. Is it cool that I said all that? Is it chill that you’re in my head? I know that it’s delicate, isn’t it? Isn’t it, isn’t it? She uses that same kind of repetition that she uses and out of the woods. Is it cool that I said all that? Is it chill that you’re in my, it’s like these repetitive questions we ask ourselves like remission is delicate. Any state where we’re starting to feel a little bit better and starting to feel hope feels delicate.

 I think at least for me, with chronic illness, a song I really think is beautiful is “Treacherous” from Red. Listen to this imagery. “This hope is treacherous. This daydream is dangerous. And then she goes, I like it,” but I just think it’s beautiful and on the same kind, wistful, tenuous hope. I would say “Cornelia Street” as well.

And then “Cruel Summer.” Cruel summer is upbeat feeling of a, when you feel you hear the way that it sounds, you’re like it. You’re like, “Woooo, we’re dancing, this is fun!” But it’s actually about this sense of this is a very bittersweet thing because I’m saying “it’s cool. That’s what I tell ’em. No rules in breakable heaven, but it’s a cruel summer with you.:

 It’s saying, I don’t know whether this is going to last. I want it to last, but I don’t know if this is about to come crashing down. The other kind of two songs I wanted to mention on this topic of, are We Out of the Woods Yet would be “Foolish One,” which is a Speak Now vault Track Speak Now being her third album. And it’s kind of about feeling foolish for when you thought you found the one you thought you found your one treatment that was going to actually make your life so much easier. And then it doesn’t work anymore. There’s a very foolish feeling we can all have.

So that’s that one. And then last one would be “Blank Space,” which kind of captures the love hate relationship with our medications. So RheumBarbie on Twitter, Dr. Noelle, Alicia said the entire course and parts of the versus a blank space speak to the love hate relationship between refractory inflammatory arthritis and DMARDs disease modifying anti rheumatic drugs. So it’s going to be forever or it’s going to go down in flames. You can tell me when it’s over if the high was worth in the pain. Yeah, I think that’s great.

And then Lisa t rumor rhyme said, got a long list of X treatments. They’ll tell you I’m insane or refractory. Love it. So I thought that was a fun conversation.

So the eighth theme, we have some more songs coming up, is “when I was drowning, that’s when I could finally breathe.” So this is what I would call allowing myself finally to feel my feelings and understanding that the only way out is through.

So when I was drowning, that’s when I could finally breathe is a lyric from the song Clean, which is in the album 1989. One way to look at it is when you hit rock bottom, that’s when you finally are able to figure out, you finally able to get clarity and know what’s important to you. And in the case of chronic illness, I look at it as truly understanding when I allowed myself to truly feel all my feelings about my diagnosis, about my health.

And that was really uncomfortable and distressing, which I did in the context of therapy, by the way. But only when I was really, truly allowed myself to feel was I able to breathe, was I able to see the possibilities that were still in my life and understand that I can cope with this. It’s almost like the more, there’s a saying in therapy that which we resist persists, when I allowed myself to feel bad is when I could finally feel good.

It’s very paradoxical, like all the Acceptance and Commitment Therapy stuff. The other part of this is again, really working on acceptance and really understanding that I might be going through cycles of grief. The grief isn’t just a one-time thing, it’s something that I might be processing in different ways the whole rest of my life and I really love the song “Labyrinth. “Labyrinth is from the album Midnights and I’m going to play a little clip of it from the Eras Tour.

Speaker 4:

MUSIC: “You know how much I hate when everbody just expects me just to bounce back, just like that. Oh oh, I’m falling in love, oh no I’m falling in love again, oh, I’m falling in love, I thought the plane was going down how’d you turn it right around? Oh oh, I’m falling in love, oh..”

Cheryl Crow:

That song is so beautiful and there’s a couple parts I relate to. One is “I’ll be getting over you my whole life.” It’s a funny thing. I’ll be getting over you my whole life, meaning usually you say I’m over someone. That’s a date. There’s a time when that is achieved. But when you say getting over you is like a verb. The process of getting over someone is going to take your whole life.

And in this case, it’s the process of understanding that this thing that for the first 20 years of my life I didn’t really have a schema for a chronic illness and that I’d be able to keep living probably a long-ish life if I’m lucky. It’s not like – I didn’t get cancer and die. It’s that I have this thing that is affecting my life the rest of my life and it’s just not looking the way that I thought it would. And that’s just something I have to contend with the rest of my life. It’ll affect me in different ways. It affected me differently as a 22-year-old than it does as a 42-year-old.

So I also love the phrase “I thought the plane was going down, how’d you turn it right around?” Because that also on the more positive note or the more happier note relates to the idea that, oh, well I thought this was going to be a horrible thing and actually I’ve learned and I’m still in the process of learning how to still thrive and have a good life with it.

So holding those two truths together on the same line of thought of learning to accept your feelings and the ups and downs. I also think “Maroon” is a great song for that. It’s about kind of contending with the legacy of a loss and the same way you’re losing me when maroon is from midnights, “You’re Losing Me” is a kind of a vaulty track.

“We thought a cure would come through in time. Now I fear it won’t. Remember looking at this room, we loved it because of the light. Now I just sit in the dark and wonder if it’s time I’m getting tired. Even for Phoenix, always rising from the ashes,” kind of saying this is hard. It’s hard to keep going. It’s hard to keep rising from the ashes all the time, but I would say the but in this case would just be, but we do it. We do it even when it’s hard.

The other dimension of this theme number eight is grieving what you took for granted and what you’ve lost. I think “Back to December” is a beautiful song from Speak Now, about I” go back to December all the time, ” is when she kind of goes back on her mind to a period of time when she wished she made a different choice. And I think a lot of us regret and I’ll say I regret taking my health for granted when I was more perfectly able-bodied.

In the same token, allowing yourself to grieve the old you, “All Too Well” is a great example of , especially the 10 minute version saying, “I remember it all too well. “I remember the good old days if you’re someone like me who had the blessing of having numerous years of good health before you got your chronic illness diagnosis.

I also think “Marjorie” has a great theme of grieving what you’ve lost. “I should have asked you questions. I should have asked you how to be,” same thing of like, I should have done more. I should have run that marathon. I’ve done that thing I always thought my body would be able to do and I’m going to put in here also a voicemail from Lisa who is Ruma rhyme on Twitter. She’s going to talk about how the song Death by a Thousand Cuts relates for her as well.

Lisa:

Hi, so I’m Lisa and the first song that popped into my head on the TSS question is probably Death by a Thousand Cuts. So I’ve got a really bad right knee but right knee due to osteoarthritis, but this was brought about by an accident many years ago. So after developing severe osteoarthritis, I kind of stopped doing a lot of my old activities from dancing and that kind of sent me spiraling into really bad depression and it took me a while to get over that. So I guess for many patients as well, when you get the first diagnosis kind of feels like the world is crumbling down and it really needs a lot of help for you to get back on your feet and do the things that you love to do from way back then.

Cheryl Crow:

Thank you so much Issa for that contribution about “Death by a Thousand Cuts.” And I definitely have noticed that’s a major theme in what people are grieving in how their inflammatory arthritis has affected their life or their osteoarthritis. In your case, having to grieve not being able to do the things that you used to be able to do or just not being able to do them the way that you used to be able to do.

The other two kind of sub themes under theme nine, when I was drowning, that’s when I could finally breathe, when we allow ourselves to finally feel our feelings is not wanting to grow up and not wanting to have to be the CEO of your care team and acknowledging that is there is a level of responsibility that comes with that. And there also is a level of power with great power comes great responsibility at some point, especially people like me who were diagnosed when they were younger, like 20, I wasn’t a child but I was still at a stage when my parents were really involved in my care.

And at a certain point you realize, not to allude ahead to “You’re on your own kid,” but you do realize you’re on your own. There’s a really sweet song from Speak now called “Never Grow Up” where she just talks, Taylor talks about not ever wanting to grow up and Emma from Instagram at odds and m also said that she relates this song to her journey. She said reflecting on childhood and all the changes in her case since the album’s previous release.

But in the case of me, I would say wanting to stay innocent, wanting to stay little, she said we could still be little in the song. That’s a really sweet song. One of the lines is, “I won’t let nobody hurt you. No one’s going to bring you down. No one can desert you, just try to never grow up.” It’s kind of like that sense of wanting things to be simple and as part of growing up is knowing that they are not.

Things are complicated. Immune systems are complicated, human bodies are complicated, relationships are complicated. It’s all complicated and sometimes you just want to go back to being a child where things were more simple.

The other one is kind of a resignation feeling resigned to what’s out of your control tinged with hopefulness. So maybe these are some themes that are kind of overlapping from previous ones, but I really love the song August. I think it has such a wistful vibe to it. And August is ostensibly talking about a relationship that kind of slipped away from the person’s fingers. They talk about, she talks about “August slipped away like a moment in time, you were never mine.”

 And in the song again, ostensibly about a relationship, you had this beautiful moment of time in August and then it slipped away and now you don’t have it anymore. And that to me is that ephemeral quality kind of relates at times to me being wistful about my health about, oh, I was in remission for that period and wasn’t that a beautiful time and I have to kind of say, wow, it’s not here and it’s not there anymore.

I’m not in that. I don’t have that right now and instead of being extremely distraught, I can just kind of appreciate it from afar. That’s my interpretation.

 Another one I really love the song Wildes Dreams. She has a line there. I can see the end as it begins and I’m going to play you a clip of it.

Speaker 4:

MUSIC: “This is going to take me down, he’s so tall handsome as hell, he’s so bad but he does it so well, I can see the end as it begins my one condition is, say you’ll remember me standing in a nice dress staring at the sunset, red lips and rosy cheeks, say you’ll see me again even if it’s just in your wildest dreams.”

Cheryl Crow:

She talks about grieving something before it’s even ending, before it has even ended. It’s like she’s writing, this is from her sixth album, 1989, she’s writing from this perspective of understanding that a lot of good things come to an end and she’s being maybe a little bit more jaded now, right? Because earlier it was all about hope and yay, I’m in love, everything’s going to be great, it’s going to be a love story. Now it’s like she knows better. She’s trying to give herself a little bit of a protective shell by saying, I know it’s going to end. I can see the end as it begins.

 It’s a bit about being present and saying, I want to hold on to these beautiful moments while they last, knowing that they might not be here forever. And that’s something that I, as somebody living with rheumatoid arthritis, again, a chronic illness that has lots of ups and downs, I’ve had to learn how to just, there’s a sense of doom. Sometimes it’s kind of underneath everything like, oh no, this remission might not last. I’m having a good day, but what if tomorrow is worse? But then you have to sometimes redirect yourself to just say, what can I just, I just enjoy the beauty of this moment right now.

The other one is “Suburban Legends.” I love this song. This is a vault track that came out in 2023. When I say vault track, I should have mentioned earlier, that’s where she had songs that she never released initially and when she was doing the rerecording, she now has them outs that kind of like bonus songs and, “Tick tock on the clock, I paced down the block, I broke my own heart ’cause you were too polite to do it and waves crashed through the shore, I dashed to the door, you don’t knock anymore. And I always knew it.”

 I love that part. It’s a bit of a feeling of, I’m going to break my own heart and stop this thing before it can go any further because I know you’re not going to do that. And it’s almost like that relationship with your body in a weird way. You break your own heart by lowering your expectations, by accepting slowly over time that you’re not in total control of your body.

Where she says, “waves crash to the shore, I dashed to the door, you don’t knock anymore. And I always knew it” kind of thing, again, you’re getting more mature now you’re understanding that there are things out of your control.

So on a different note, theme nine is “Look What you Made me Do.” Losing your innocence, finding your voice, and becoming an advocate, which is a less kind of, I want to say internal part and it’s more about like, Hey, I’ve been hurt and now I’m going to turn that pain into my purpose and I’m going to do something about this situation.

And the situation is this is more of a meta point about understanding the systemic barriers to your happiness and also the individual barriers and saying, okay, I could feel like all this stuff was taken away from me and I’m going to allow myself to feel sad about that, but I’m also going to allow myself to feel angry and do something about it.

So the first one is just about the losing your innocence and “Dear John” is from the Speak Now album, it is absolutely beautiful a gutting song about looking back on a relationship and realizing with what you know now, how wrong that was. And to me it’s really relates to losing your innocence in terms of — I used to think that the healthcare system was really designed to help people. Now I see that there’s a lot of negative things out there that are barriers to me getting the kind of care that I feel like I deserve. So let’s listen to a little bit of Dear John,

Speaker 4:

MUSIC: “Don’t you think I was too young to be messed with, the girl in the dress cried the whole way home, I should have known.”

Cheryl Crow:

So we’re going to talk a lot more about turning your pain into advocacy as well. I think Dear John is about processing the pain and accepting that maybe this was something you could have foreseen that was going to happen, but I think speak now just as a track, as a title is about learning that you do have a voice.

The second song that I just think, not necessarily in a direct lyric sense, but in a vibe sense, “Look at what you made me do” is a song that really captures, I just want to strutt to that song and it reminds me of going to Washington DC, our nation’s capital and also my state capital, Olympia, Washington and advocating for better access to medications, advocating against unethical insurance, barriers to patient care from both occupational therapists perspective and their rheumatoid arthritis patient perspective. And it’s like, “look what you made me do” in the sense of you could have made this beautiful, you could have made this system work but you chose not to. And so now I have no choice but to advocate. And we’ve been saying you, I’m talking about the insurance companies. I know there’s other systemic issues too.

The other song I love to relate to this is “New Romantics ” when she says, “I can build a castle out of all the bricks they threw at me.” It’s like again, feeling that empowerment to say like, okay, shit happened to me and I’m going to then take all that and make something beautiful from it. Make a better world. It’s very inspiring.

The other one, it’s just a gutting song, it’s so sad but also relates directly to advocacy for me is look at how “My Tears Ricochet.” I’m going to play you a little clip from that.

MUSIC: “Wishing I stayed, look at how my tears ricochet. And I can go anywhere I want, anywhere I want just not home. And you can aim for my heart go for blood, but you would still miss me in your bones. And I still talk to you when I’m screaming at the sky, and when you can’t sleep at night you hear my stolen lullabies.”

So if you are a Taylor fan, “My tears ricochet” has a lot of different interpretations and meanings. Literal sense. My tears are ricocheting to you saying the pain that you caused me is now ricocheting off of me and now turning into your tears that I’m going to take the pain that you caused me and make you hurt now. And sounds a little vindictive. In the case though for me of social justice and advocating for a better healthcare system, “my tear ricochet is saying, look, you deny me these medications only, the only reason is to line your pocket as an insurance company – that’s going to hurt you now.

I’m going to advocate and make a better system where you’re going to have to actually provide quality care or you’re going to have to, what’s the word reimburse quality care. The other, other layer that I haven’t seen very many people talk about but immediately came to my mind when I heard this song the first time is Taylor in one of her very first songs that ever got played on the radio and they got popular is called “Teardrops on my Guitar.”

Now in this case, she’s not just talking about a romantic relationship, she’s talking about the relationship between her and her record company, which there’s a long story for that you can find multiple articles online, but basically her masters got sold without her having a chance to buy them. And so she’s saying, my tears the teardrops on my guitar that these masters I originally thought I was going to be able to own, it’s now ricocheting back to cause you pain because I’m re-recording all of my masters now. And she first wrote about teardrops on my guitar, which is really sweet, very simple song. “He’s the reason for the teardrops on my guitar,” talking about a boy. And now she’s saying, my tears ricochet. She says, there’s a line from what the clip I just sent where she goes, “when you can’t sleep at night, you hear my stolen lullabies” and it’s just really beautiful.

So that is another song that for me relates directly to the chronic illness experience of becoming an advocate and trying to do something about all these, the moral injury – they say there’s a moral injury to working in the healthcare system with all these broken aspects of it. It’s also a moral injury that patients experience when they’re like, my doctor told me I need this medicine and I can’t get it because the insurance company which I pay into is saying that I need to take the cheaper medicine first. How does this make any sense?

There’s just three quick songs I’m going to mention that are just literally, I just wrote here “petty” and they’re petty songs, but just there’s sometimes you just get mad and you want to process that. So picture to Burn, this is one of the ones she wrote when she was littler.

It’s about saying you’re just another picture to burn and better than revenge. And then there’s a particular line in “End Game” from Reputation that I really like where she goes “And I bury hatchets, but I keep maps of where put ’em.” Talks about, she’s saying maybe I’ll bury the hatchet, but I’m going to keep a map of where that is. I’m going to keep the receipts. I know I’m keeping track of what you’ve done to me kind of thing.

So the last part of this theme, theme nine of again, losing your innocence but finding your voice and becoming an advocate is kind of back to the emotional journey of going from kind of hopeful and naive to skeptical and more jaded. So this one “Would’ve, Could’ve, Should’ve” I’m going to play a clip of that from Live from the Eras Tour, but it is about processing all the things that maybe you would’ve done if you had known better and about losing your innocence. I’m going to play a clip.

MUSIC: “God rest my soul, I miss who I used to be, The tomb won’t close, stained glass windows in my mind, I regret you all the timeI can’t let this go, I fight with you in my sleep, The wound won’t close, I keep on waiting for a sign, I regret you all the time.

If clarity’s in death, then why won’t this die?Years of tearing down our banners, you and ILiving for the thrill of hitting you where it hurtsGive me back my girlhood, it was mine first.”

So that song is one of my absolute favorites. It’s so sad. The part that I don’t know if you could hear it really clearly, but she goes, God rest my soul. I miss who I used to be. The tomb won’t close stain glass windows in my mind. I regret you all the time and then I can’t let this go. I fight with you in my sleep. The wound won’t close. I keep on waiting for a sign. I regret you all the time. And then she goes, if clads in death, then why won’t this die years of tearing down our banners, you and I living for the thrill of hitting you where it hurts, give me back my girlhood. It was mine first. So I would imagine this is about a relationship where you really grew up in ways that are not very happy.

I relate to this when I think about I miss the person who used to believe that again, it was simple. It was like that “Never Grow Up” song. It would always be simple. I miss what it felt simple. I could just, when you get an owie, you go to the doctor, the doctor makes it better. The systems are a lot more complicated and that’s part of growing up.

And for me, I also recognized I had privilege to have so much faith in the healthcare system and in grownups and in people to treat me well for most of my life. Until I had that first experience of medical gaslighting, I was extremely lucky not to have to learn these lessons earlier. But that’s just beautiful imagery in that song and it’s a good one to listen to if you’re just kind of mad and regretful and sad, it helps you process that.

So there’s two themes left. Thank you for those, I’m like, who is actually still listening at this point? It must be the diehard of fans, but theme 10 is “State of Grace.” This is on a more positive note just talking about the chronic illness community and that’s been probably the best thing that’s come out of my 20 years of having rheumatoid arthritis is connecting to other people and making deep friendships supporting each other, developing supportive communities, joining supportive communities like Rheum to THRIVE.

And I made that community, I knew the power of connections and the power of feeling like you’re not the only one going through something. I mean, I think in a more meta way, that’s kind of what music does too. Someone puts this stuff to words and to music and you realize, wow, I’m not the only one. So let’s listen to State of Grace.

MUSIC: “So you were never a saint, and I’ve loved in shades of wrong. We learn to live with the pain, mosaic broken heartsBut this love is brave and wild. And I never saw you coming…”

I know it’s a little hard to hear from these live recordings, but I’m trying to be respectful and not use the originals, but she says, “I never saw you coming and I’ll never be the same. This is a state of grace. This is the worthwhile fight. Love is a ruthless game unless you play it good and right,” and so to me, I just like that phrase state of grace. It’s like the grace. It reminds me of the grace that we have for each other. The people who live with chronic illness who connect either online or in person or in virtual groups never saw you coming.

When I got diagnosed, I always thought it was going to be an internal thing that I’m dealing with on my own, and I didn’t really anticipate being able to make these wonderful connections. So of course basically any of the love songs that talk about that feeling of relief and that feeling of being seen, that feeling of being known are great.

“Gorgeous” from Reputation, I love that song. It’s just a fun bop. It’s like “you’re so gorgeous. I can’t say anything to your face because look at your face.” It’s silly. And then it also does, I sometimes have to process – I think all of those of us on social media have to process, there is also jealousy within the community and sometimes that’s just something we have to deal with.

There’s one part where I made a little TikTok video where I was talking about the lyric, “You make me so happy, it turns back to sad. There’s nothing I hate more than what I can’t have. You are so gorgeous. It makes me so mad.” Sometimes you make friends with someone and then it’s like, oh, well then they’re in remission, they’re doing well and you’re not. That’s part of it. That’s part of the complexity of human relationships. But mostly that song just relates to me just that happy feeling of finding somebody who you just want to support and that you can connect with.

Also “Long Live.” That’s kind of the anthem of a lot of the Taylor Swift fans. It’s like “long live the magic we made. I had the time of my life Fighting Dragons with you.” It’s just really sweet imagery and it’s just represents to me that feeling of finding that heartfelt support and finding people who just get it.

 The last one I want to mention for this theme is “New Year’s Day.” So it’s talking about “I want your midnights, but I’ll be cleaning up bottles with you on New Year’s Day,” saying I’ll be with you through the good times and the bad, which I think is a beautiful, beautiful thing.

Okay, we have arrived at our last theme, my lucky number 11 on episode 13, Taylor Swift’s lucky number ,all about the Taylor Swift songs that are helping us cope with inflammatory arthritis and chronic illness. So this theme I am calling, “Long Story Short, I survived,” about acceptance, self-compassion and a tenuous new hope.

 So I’ve talked a lot about this in the past that initially when you get diagnosed, there’s the hope that you pin all your hopes typically on to a way to cure or heal your condition. And through time, a more sustainable hope or helpful hope to me has been a hope that I can weather the storms, I can weather the ups and downs, I can thrive in the midst of things not going perfectly all the time. That is a more sustainable again and helpful sense of hope than a hope that I’m going to achieve this endpoint.

 And I think if you look at Taylor Swift’s body of work, she writes about a lot more than just love story love songs and relationship songs. But if you think about her earlier years where it seemed like the destination we’re aiming for is the happy ever after, right? Is settling down. And that’s in a similar way with chronic illness. The destination you’re looking for is figuring out my condition, making it go away, healing it, controlling it in some way.

And then the more sustainable thing long-term is saying, “what if I can live in the moment, live in the ups and downs, be present with it from a mindfulness and self-compassion standpoint?” and say that I have strength now to get through whatever life hands me whether I got my happy ending or not.

So I think one of the songs that I’ve mentioned the word innocence, a lot of times I’m going to actually now play a clip from the song “Innocent.” And for me, Innocent is about really reconnecting to my body and appreciating my body even though my body is also maybe turning against me a little bit and having an autoimmune disease, realizing that I still love my body despite its limits. So let’s listen to a clip from Innocent.

MUSIC: “Wasn’t it easier in your firefly catching days? When everything out of reach someone bigger brought down to you. Wasn’t it beautiful running wild til you fell asleep? Til the monsters caught up to you. It’s alright, just wait and see your string of lights are still bright to me oh, who you are is not what you did, you’re still an Innocent.”

I just really love the imagery in that song, “your string of lights is still bright to me, Oh, who you are is not what you’ve been. You’re still an innocent. “So again, it’s about accepting and loving your body even with its limits. That’s how I interpret that.

And next we have a voicemail from Amy where she talks about loving the song, shake it off, and having that relate to her chronic illness experience.

Amy:

Hey Cheryl, it’s Amy. I was calling to tell you that my Taylor Swift song that’s helped me cope with my autoimmune arthritis is “Shake it Off” because stuff just happens and you just have to shake it off and deal with it. Okay, so your medication, quit working, shake it off, what’s the next step? You wake up one morning, your elbow doesn’t bend, what are you going to do? You’re going to shake it off and figure out what you can do to make it feel better that day, whether it’s a brace or a heating pad or ice or a tens machine, whatever works. So shake it off is my song. Thanks for asking me. Bye.”

Cheryl Crow:

Thank you so much, Amy for sharing that. I love Shake it off as well. The other one that kind of relates to this idea of I can do this, I can shake it off, I can cope with all of this is “Mastermind” to me. I relate Mastermind actually to my own process of becoming occupational therapist, looking through the research really in depth and figuring out how the evidence-based tools to manage the condition to reduce pain, reduce fatigue. And I don’t want my whole life to be about that, but I want to feel empowered to have a toolbox to manage my symptoms.

And so I just love the song Mastermind, it’s about her saying I’m a mastermind. “None of it was accidental.” And she talks about I’m a mastermind and now you are mine. But I actually relate that to me developing the Rheum to THRIVE program as well, the say self-paced curriculum and the support group because it is a really empowering experience to take all of the lessons you’ve learned and take all the research you’ve done and put it into something that can help others.

The other part that I wanted to delve into more for our last theme is just the straight up acceptance. So I love the song Evermore. Let’s listen to a clip from Evermore. Now it’s a duet like exile, but she’s sang it solo during the Eras Tour

MUSIC: “Is there a line that I could just go cross? And when I was shipwreched I thought of you. In the craks of light I dreamed of you. And it was real enough to get me through. And I swear, you were there. And I was catching my breath, floors of a cabin creaking under my step. And I couldnt’ be sure, I had a feeling so peculiar, this pain wouldn’t be forevermore. Evermore, evermore…”

So she’s saying, I’ve talked a lot in this podcast, 113 episodes of this podcast about uncertainty and being able to tolerate uncertainty rather than just looking for certainty. And in this case she said, “I couldn’t be sure, but I had a feeling so peculiar this pain wouldn’t be forevermore.” And it’s a very peaceful song and she goes through this or at the end it ends up being in a very peaceful place, although in the middle you can hear that “I’m on waves out being tossed. Is there a line that I could just go cross? And then when I was shipwrecked, I thought of you.” It’s talking about you going through all this stuff and then you’re coming out the other side and doesn’t mean that that’s going to last forever, but that maybe you’re going to be able to cope with it no matter what.

The next one is “Daylight.” I just absolutely love this song, especially the original production from Lover. One of the chorus is “I once believed love would be burning red, but it’s a golden,” kind of saying to me it relates to, I once believed that I had to be in a perfect disease control state in order to be happy, in order to have peace. But actually now I know it’s different. It’s not red. Red is like the black or white answers. It’s golden like daylight. It is something that is maybe — I love ,actually relates to this quote: “At sunrise everything is luminous but not clear. You can love completely without complete understanding.” That’s a beautiful quote I think about a lot too. Being able to kind of revel in the luminous beautiful moments of life even when you don’t have all the answers. I think that’s huge for me.

I mentioned the word peace a few times. There is a song called “Peace” that I love. Cindy emailed me and said that she relates to peace due to her chronic illness. And there’s a chorus that says,” would it be enough if I could ever give you peace or if I could never give you peace?” saying in terms of relationships, would it be enough for you if my health is going to be a chronic issue?

And for me it’s also, would it be enough if I’ll never have all the answers? And for a long time I kind of was like, no, I need to find the answers. I need to talk to another doctor, talk to another person, read another book, open another tab on my computer and then realize, wait, no, actually I can have peace with the unanswered questions. I have to because no matter how much I learn about rheumatoid arthritis, no matter how many scientific advancements there are until there’s a cure, there’s going to be uncertainties out there. I can be at peace even if my body isn’t perfectly at peace, if that makes sense.

Long story short, I survived. That’s my title of this theme. And there’s a song called “Long Story Short” on the album Evermore where she just goes, “long story short, it was a bad time. Long story short, I survived” and I repeat that to myself a lot. You can survive basically.

And I also love just a little phrase from “Everything has Changed.” She says, “all I know is a newfound grace.” I just think that’s really beautiful and the phrase newfound grace for me relates to the sense of acceptance and tolerating uncertainty for me versus again, fighting it.

I also love the song “Breathe.” “I can’t breathe without you, but I have to. “It really to me reminds me of how it’s like I have to live with and accept certainty even if it feels like I can’t. She’s saying I have to breathe and I feel like I can’t breathe without you, but I have to slash and I will.

“You’re On your own Kid” is one that lots of people have related to when I’ve talked about this in my Instagram stories before. That’s from the album Midnights. And it’s about how at the end of the day, you are the only guaranteed constant in your life and it can be very isolating but also can be empowering to be like you’ve been on your own kid, you’ve made it through, you’ve made through a hundred percent of your worst days. And you can face this, she says, you’re on your own kid. You can face this. Dr. Jean Liu, who’s Rheum Cat on Twitter mentioned that this one relates to her as well. So I’m actually going to end with another podcast, a voicemail or listener voicemail from Chris Shepherd.

Chris Shephard:

The last thing I’ll say about Taylor that’s really moved me is her use of language and Switch on Pop is a podcast that I like to listen to think about music more. And they have some great episodes about Taylor you may want to check out. And looking at her incredible ability just and a lyricist and a poet. And the person she really reminds me of is Amanda Gorman. And so you can compare some of those lyrics from Antihero with some of the lyrics from “The Hill We Climb,” the poem by Amanda Gorman, just to think about a few lines from that, “that even as we grieved, we grew that even as we hurt, we hoped that even as we tired, we tried, it can never be permanently defeated in this truth, in this faith we trust for while we have our eyes on the future, history has its eyes on us.”

Cheryl Crow:

I just want to thank you all again, anyone who got to the end of this podcast, it’s been really, really fun for me to delve into all of Taylor Swift’s catalog and figure out how I think about that stuff all the time when I’m in the car, in the shower or whatever, putting it actually all together in one coherent ish list, how her songs relate to chronic illness, how they help me and others cope with chronic illness, how they help people feel seen or how they just relate to the music.

It’s been fun and I look forward to, maybe it’ll be a part too when she comes out with even more albums. But for now, I’ll say goodbye for now and let me know if you have any thoughts to this episode. You can always comment on social media, Instagram, I’m on all of them, or you can send me a message at info @myarthritislife.net. Thank you so much. Bye.