A 2016 study in Psychology, Health & Medicine found that over 50 percent of Americans have at least one chronic illness. Yet, the chronically ill are often disregarded by health insurance companies and doctors, according to researchers at the Harvard Medical School. Even after the passage of the Affordable Care Act, researchers found that one in seven people with chronic illnesses still lacked coverage. After developing Lyme disease, Seattle-based musician Kaeley Pruitt-Hamm found herself in a similar position. Now, she’s using music—with an EP set to be released on June 2—to draw awareness about the impact of chronic illnesses. Her lead single, “Believe Her,” is an ode to “the phenomenon of womxn not being believed for their experience in doctor’s offices or in sexual assault cases.”
She talks to Bitch about her battle for proper healthcare, the healing power of music, and believing women about pain.
Tell me more about “Thorns” and the process for creating the video and the song. Emotionally and mentally, where were you when you were creating the song?
I was a relatively able-bodied, young, 25-year-old working in D.C. in the non-profit scene before I got a bug bite in West Virginia while I was on a camping trip. I developed swollen lymph nodes. The really huge bug bite swelled to the size of a golf ball on the back of my neck. I started sweating through my clothes and getting a shooting pain down my neck. Things slowly started declining over the course of the next 10 months. I started not being able to open my eyes very well while I was driving because they were so sensitive to light. I started not being able to type or hold pens, things would drop and I would start to have a lot of pain in my hands. I started not being able to really play instruments.
Eventually, I got so sick, I could hardly sit upright in a chair or walk up a flight of stairs because my heart and nervous system was affected. I was taken down by Lyme disease. I kept going from doctor to doctor. This is a very common story for millions of people, especially women, who go into doctor’s offices with complaints about lots of different body parts. The healthcare system doesn’t really process that well because insurance companies dictate that we keep a very narrow view of a body. My doctor that I first went to said that I needed to choose only one symptom because I had too many. She said, “I only have seven minutes. I’m in a big rush. I only have seven minutes to work with you.”
It took them 10 months to diagnose me properly. I have a lot of frustrations when it comes to that. I wrote “Thorns” after a year of medical treatment. I was finally gaining a bit of my abilities back so I could sit upright a little bit more, play a little bit more, but for about seven months, I was hardly able to talk or walk, let alone sing. I wrote “Thorns” because when I started feeling better, I just wanted to forget about it, I wanted to move on and live my life. But I felt like I owed it to myself to tell the story of what it was like to have that experience of having your body fail.
The music studio is also about the message that a lot of people send to women, especially queer women and gender nonconforming people, about what to do about their pain—to just numb it and try to escape it. The song is about really staying united with your body, being on your body’s side, and not believing that there’s anything wrong with that. It’s about feeling your pain, so you can really get to the root cause of it.
Pain is gendered, even for gender nonconforming people. The way that you present to a doctor determines the type of treatment you receive. How difficult has it been for you to receive proper and adequate treatment?
I’ve had to fundraise for medical treatment because it took the doctors so long to recognize that the root cause of my pain was an infection rather than just my own fault. The disease had spread to all my joint and my organs, including my liver and my pancreas. It was affecting a lot, so it’s going to take several years to treat now. There’s a lot of discrepancy and controversy around Lyme disease right now because the Infectious Disease Society of America is being very strict with its guidelines for diagnosing and treating the disease. So there’s a need for a lot more research around Lyme disease and any autoimmune disease where your system starts attacking your own body parts without any reason that the medical system can understand. A lot of people are diagnosed with Graves’ Disease, for example, which affects your thyroid, or connective tissue diseases where your body is attacking your connective tissues, or hyperthyroidism, etc.
Research is showing that a lot of those diseases have a root cause of infection, and viral infections, but those infections aren’t caught by testing methods that are approved by insurance companies. So, in this new paradigm of medicine, there are so many labels and diagnoses that place the blame on the individual. The treatment for that is to numb their pain with fibromyalgia and suppress their immune system. But what if they actually have invaders and attackers in their bodies that are affecting their immune systems? They just haven’t caught it on their blood tests.
I am finally diagnosed and my treatment is some naturopathic and some allopathic medicine, but it’s been very difficult to get doctors who understand that paradigm of medicine. Basically, it’s a game of biases in the doctor’s office, in a congressional office, in the Oval Office—where white, older males view our situations—that totally affects how resources are allocated, whether that’s healthcare or housing or voting rights or tax breaks. The people in power who dictate whether or not someone gets access to healthcare or clean drinking water or education are mostly rich, older, white men.
I’ve really gotten a lesson, and I’m a cisgender white woman, so I have a lot of privilege to get by, from a lot of my inherited privilege from the history of white supremacist colonization. I have a network of people who have donated through GoFundMe and Patreon to help me survive and afford treatment that’s costing thousands of dollars a month. A lot of people don’t have that. It’s not fair that I’m able to afford healthcare and others can’t.
How has Lyme disease impacted your recording process? How do you work around the disease to tap into your creative process?
For over a year, my recording process involved me basically propping my head up on pillows and cuddling with a little microphone on my laptop and using Garage Band. The day that I had to be retrieved from D.C. and go on medical leave from my job, my bandmates from D.C. mailed me a microphone. I’d never had a high quality microphone before. I’d always just used the internal microphones from my Macbook Pro. They said let’s keep making music. I don’t know what I would’ve done if I hadn’t had that outlet because I went from spending 17 hours being out and about—living my dream life—to all of a sudden living in my parents’ upstairs guest bedroom. The most eventful thing in the day was being able to see a bird out the window.
It was very surreal. For over a year, I would take about two to three minutes to 20 minutes, at most, where I would be able to keep my head lifted up long ago to vomit out some songs. I would just put them on Garage Band. Three songs on my EP were recorded in that way were I would be just laying down or I would sit up at the piano, play it through, and then I would collapse because it would take so much energy.
A lot of those are mostly one and only takes I would do. I would write them out, sing them once through, sing them once with the mic on, and then I would layer my vocals on top of that just to sing with myself. It was a very organic process that had to be made into a real accessible way of saying lo-fi is good enough.
There’s a quote on your website from Nina Simone that really struck me: “An artist’s duty, as far as I’m concerned, is to reflect the times.” It’s really, really resonant in this moment. How are you using music as a way of talking back and speaking truth to power in this political moment?
It really shouldn’t be a political thing for people to be able to afford clean drinking water or housing or healthcare, but it is. When people separate the political and personal, it’s a product of privilege. For me, before I got sick, I really cared about a lot of social justice issues and I was very involved, but it didn’t hit home until I had a lot of those privileges ripped from under my feet and had to really be confronted with either you pay attention and fight on these issues or you don’t survive. When you have to be involved in activism, political art becomes a necessity. Of course you can write about romantic relationships because that’s a common experience that almost everyone shares.
I think we need to be talking about these issues and discussing issues like gender equity, racial equity, climate change, and corporate greed because of those things can seem so distant for a lot of people who don’t think they’re a problem. I think that’s one of the biggest things I hear from conservative friends who are supporters of Donald Trump. They don’t understand what it would be like to be forced to flee from a war-torn country and become an immigrant. They couldn’t even imagine what it would be like to not be able to afford rent.
Just sending them policy papers and articles is different than art as disruption. Music and poetry are really good and better ways of getting into someone’s heart and helping them empathize with someone else’s experience.
What is the overarching theme of your EP Hi, From Pillows? Who do you hope gravitates toward it?
With Hi, From Pillows, I was hoping to do spark a dialogue with people to point to patterns happening in society in terms of housing and healthcare justice. [Hi, From Pillows is] for people who are experiencing these diagnoses and crises of all of a sudden having your throat close up after living in an apartment that’s moldy and not being able to find safe housing because you’re going through medical treatments. The insurance system wants to make that an individual thing and a shaming thing for people going through mental illness or physical illness. We’re boxed into our little bedrooms and we can’t be out and about as much making people feel the urgency of the situation.
It feels really empowering to hear other stories from people going through what you’re going through. That’s where movements start. I wanted the EP to be a starting point of saying, “Hi, from pillows. I’m here. Are you there?” It’s about connecting with other people who have chronic illnesses and be able to help people who aren’t chronically ill to understand what that might feel like. It can happen to anyone.
We’re releasing the EP with Local Woman Records and I’m just indebted to all of these people who happen to be able-bodied allies who are modeling what it looks like when you really want to help spark dialogue about the disenfranchised using your own privilege to help people do that.
I’ve been so, so amazed and fortunate to have a lot of friends help me out.
Invest in Kaeley Pruitt-Hamm:
You can support Kaeley’s music on Patreon.
Her EP, Hi, From Pillows, will be released by Local Woman Records on June 2.
She will be performing at the Freemont Abbey Arts Center in Seattle on July 13. Follow her Facebook page for more info.