A Conversation with Jesse Meadows on Diagnosis, Crip Time, and Living Inside the Metamorphosis
Conversations Behind the veil 008
In the eighth edition of Conversations Behind the veil, I sat down with Jesse Meadows—writer, researcher, and the voice behind Sluggish, a newsletter about disability, deviance, and what happens when we stop trying to keep pace with a world that was never built for us.
Jesse writes with precision and curiosity about the politics of mental illness, the narratives that shape our diagnoses, and the cultural forces that mold our minds. In Sluggish, they reclaim a word historically used to shame slowness, laziness, and drift, reframing it instead as a radical response to disability, queerness, and embodied limits. Their work weaves theory, lived experience, history, and art into a practice that honors the slow, the strange, and the easily overlooked.
This series is a space for honest, unguarded dialogue with fellow artists and writers. We explore the unseen: chronic illness, creativity, queerness, neurodivergence, and the quiet work of staying whole in a fractured world.
Content Note: This conversation includes discussion of chronic illness, disability, medical trauma, and experiences of misdiagnosis.
vōx: Jesse! I am so delighted to have this chat with you. Your substack is one of my favorites. The way you research and share information so it’s easily digestible, not to mention enjoyable, is often tough to find in the academic and scientific spaces.
I recently watched your video in your post POTS is a real trend, and it has a long history. In it, you discuss the history of POTS which is so fascinating and wild (I had no idea it can be traced back to the 1800s!). You also talk about a neurologist currently peddling a book on overdiagnosis, claiming conditions like POTS and long COVID are psychosomatic.
Before the Diagnosis, There Was the Body
Firstly, hello fellow POTS brethren. I can trace mild symptoms of my POTS back to when I was a teenager. I believe it was a really bad car accident that triggered the beginning of mine. Because around that time I started having my very first gastrointestinal problems, and I remember going to events and concerts and having trouble standing for long periods like I used to, sometimes becoming faint.
I also remember being diagnosed with anxiety as a teen but being totally confused at why oftentimes my brain didn’t have anxious thoughts running through it but my body had anxious symptoms. Of course, even if partially this was POTS, it was definitely compounded by my undiagnosed autism. Going through the world not understanding socially a lot of what’s going on while also having overwhelming sensory experiences is stressful!
And then sometime during the early COVID years mine became disabling. I’m not entirely sure whether it was from something viral or if it was when I had surgery on my torn meniscus. Either way, suddenly I had moderate to severe POTS, which I attempted to ignore for years burning myself out further.
It didn’t help that I saw dozens of doctors over those years, none of whom would diagnose me with anything. I had to take things into my own hands to manage the symptoms myself as they became unbearable.
This spring is when I finally got a diagnosis, both POTS and hEDS. It was such a relief to stop gaslighting myself.
In your video, you talk about how this neurologist is arguing in her book that diagnosis can make someone think they’re a sick person. But in my experience, being an undiagnosed sick person for 20 years, I already felt “sick.” I felt totally broken, worthless, unsure why I couldn’t keep up with the world. I felt totally disconnected from my own body, using the justification of a non-diagnosis to ignore everything and push myself harder.
It’s been a huge relief to realize that I’m not broken. That genetics were stacked against me. That I wasn’t working with the same body as most of my peers. Now I know how to be more gentle and find compassion for myself, how to take care of this body.
I wonder what your experience has been in relation to your own diagnoses? Have they felt empowering or limiting?
If you could go back to your pre-diagnosis self, what would you tell them?
Jesse Meadows: Thanks so much for having me! And for reading my work so closely, I am honored!
I’ve actually had both kinds of experiences with diagnoses, and even with the same diagnosis, it’s shifted over time. In my late 20’s, I was diagnosed with bipolar 2, and at first it felt empowering, like I had an answer and a plan, but over time, that plan didn’t end up helping me — literally, in the sense that the meds just did not work, but also in the sense that it didn’t help me understand my life better, because it wasn’t accurate.
Being able to take off the bipolar lens and put on an autistic one was really huge for me. I definitely relate to that feeling of relief you describe, and the way a diagnosis can allow you to re-story your life. I think the amount of agency we have in the process of diagnosis can make the difference in whether it’s an empowering or limiting experience. Is it a collaborative effort that you get to participate in, where your knowledge of yourself is valued and respected, or is it a label that’s placed on you, regardless what you thought about it?
I’m a hyper-curious person and I’m always researching, so I tend to show up in the doctor’s office already knowing a lot and having a lot of informed questions, which I have realized over the years that many doctors really do not appreciate! That never made sense to me, because logically I thought that more information would help them help me better, but actually it just annoyed them.
I went for a second opinion a couple years after getting dxed bipolar, and I showed up to the appointment with ten pages of notes and reasons why I thought I was actually autistic instead. The psychologist basically ignored everything I had written and a lot of what I said, re-diagnosed me bipolar, and added an ‘unspecified personality disorder’. The report she wrote up about me was so off, my partner said it sounded like she had gotten her notes mixed up with another patient. To be fair, every session I had with her, she seemed super stressed and distracted.
To me these kinds of bad experiences with diagnosis are a symptom of medicine being a for-profit enterprise. Most doctors have thousands of patients on their rolls and they’re pushed to see as many per day as they can, to the point that it’s not humanly possible for them to remember who their patients are and have an actually healing relationship with them. There’s no time for care, or really getting to know patients.
What Naming the Thing Makes Possible
My experience with POTS was totally different — it was actually a good one, which I realize is very much not the norm, since it’s so rare to find a doctor who knows about dysautonomia (even though, in the Covid era, it really shouldn’t be! It’s so common!).
I’ve been super lucky to find a really great GP who shares my curiosity and doesn’t get weird when I tell her I’ve been researching, but actually sends me papers to read, which I love. I’d been telling her about a bunch of seemingly unrelated symptoms I was having over the course of a couple years, and then last fall I started getting full-body hives anytime I exercised, then really severe, chronic headaches, which, long story short (and after tests for more serious stuff came back fine), led me to POTS.
Beta-blocker + sodium + supine breaks have basically fixed my headaches, and I’ve been trying LDN for a few months, which I think has made a huge difference in my fatigue and chronic pain in general. These are things I never would have figured out without the diagnosis, which is why that book made me so mad, because it claims that the POTS diagnosis has not improved anyone’s health at all.
It’s just complete bullshit, but it’s an example of a really popular strain of conservative ‘overmedicalization’ discourse right now that views psychiatric and chronic diagnoses (and in particular, autism and adhd), as totally negative and damaging to people’s lives over time. And I do want to acknowledge that diagnoses can cause harm sometimes, but I think this idea that the label is the whole entire problem and we would be fine if we just stopped worrying about it comes from a total misunderstanding of how ableism precedes the act of labelling, and how many of us experience disability for years before we ever get diagnosed with anything.
I think I would probably tell my pre-diagnosis self that they weren’t being dramatic and they deserve care. I really neglected my health for a very long time and just tried to suck it up and push through everything, and I think I probably could have avoided the worst of my burn-out and shame if I’d come to understand myself as disabled sooner.
vōx: Oh my gosh, sodium and positional changes like having my feet up so blood doesn’t pool while sitting have totally changed my life as well. I couldn’t agree more.
I also really feel for you in the fight to get an autism diagnosis. It’s such a shame that it’s so common to have an incorrect or auxiliary diagnosis before learning the truth.
I tried so many different therapies for my anxiety and depression when I was younger, but none of them worked until I saw them through the lens of autism. Sure, I had some social anxiety, but most of my anxiety came from ignoring my sensory distress. Once I started protecting myself from that, whether through earplugs or sunglasses or simply not going to big loud events, my anxiety overall lowered considerably.
And once I knew I was autistic, I stopped shaming myself for “not keeping up” with my peers, feeling like a fraud to my friends (from autistic masking), and seeming to not enjoy normal things like parties and festivals and loud bars. The result was self-compassion and self-understanding, which led me down a path toward healing my struggles with self-worth and learning to love myself.
Jesse: Being able to develop that self-understanding is so important! Diagnoses definitely have this dual nature where they can help you understand yourself better, or they can obscure what’s really going on, depending how well they fit. I think it’s such a human impulse to want to find a name for a thing, and it’s really important that we have shorthand terms to be able to discuss complicated experiences. I guess the key for me is just keeping in mind that these diagnoses are abstracted categories that are always going to oversimplify some things, so I try to hold them a bit lightly.
From Detour to Metamorphosis
vōx: In your recent post ADHD Consciousness, Brain Wrinkles, and Life-world Disruption, a roundup of research papers, I was incredibly moved by The Metamorphosis: The Nature of Chronic Illness and Its Challenge to Medicine by S. Kay Toombs. In it, as you state, Toombs discusses “how chronic illness is fundamentally different from acute illness, and what that means for the doctor-patient relationship.”
I never would have guessed that topic could move me to tears. But the piece overall is so poignant for those with chronic illness and medical trauma.
I was really struck by a quote in the piece from R. F. Murphy – “Nothing is quite so isolating as the knowledge that when one hurts, nobody else feels the pain; that when one sickens, the malaise is a private affair; and that when one dies, the world continues with barely a ripple.”
Toombs talks about how important it is that the chronically ill patient doesn’t feel abandoned by the medical system due to the fact that they are “incurable.” This is a huge part of my own medical trauma and internalized ableism that I’ve grappled with these past few years.
Societally we do see illness usually as something temporary, something to be “healed.” People who are sick are expected to be fighters, never giving up on the cure mindset. I just wrote a whole piece on “warrior” language and how this in itself can be problematic. It’s exhausting and demoralizing when you live in a body that cannot be fixed. And if you live forever in this fighting against sickness mindset, it can really carve you into pieces as a chronically ill person. Your body becomes a battleground, and in this you can’t find peace or love for your whole self, only the parts of you that “aren’t sick.”
I’ve been on a journey to love my body even when it’s hurting, to love my body exactly as it is. It’s hard! It goes against our culture. It can look like giving up, but it really isn’t.
We don’t often talk about the ways chronic illness changes who a person is fundamentally. Toombs really put language to this transformation. The body becoming something new, something I have to live alongside. It made me wonder: if acute illness is a detour and chronic illness is a metamorphosis, then what does it mean to live well inside that metamorphosis?
What do you think our culture would look like if we shifted from cure-centric stories to stories of accommodation, coexistence, or even reverence for disabled bodies?
Jesse: I am also on that journey, it’s so hard. My whole thing with Sluggish is embracing slowness — not in like a cottage core slow-living way, but in a disabled, falling-behind, crip failure way. It’s something I’ve been really ashamed of and tried so hard to compensate for and mask most of my life, and I just can’t do it anymore. I’m slow, I take forever to do things that other people find easy and quick, and I just need more time.
Living well inside the metamorphosis is such a good question, I don’t know if I’ve figured out an answer! For me I think it’s involved unhooking myself from a concept of linear time, and not trying to organize my life around steady progress toward a goal. Understanding life in terms of cycles and spirals instead of straight upward lines. Remembering that every ending is also a beginning.
I think living well for me also involves obsession — like I need a thing to be so obsessed with that I can’t do anything else, that’s where I get all my joi de vivre. Usually it’s an intellectual interest, so I’m always reading about some niche thing and then writing about it online. But with POTS I’ve become super heat intolerant, which meant last summer was like fatigue fog city for me. I was stuck on the couch next to the A/C everyday, but I also couldn’t really read much through my mashed potato brain, so I had to find a new obsession I could do supine that didn’t involve too much thinking. I taught myself how to crochet off YouTube and honestly that saved me from falling into despair, and now I can’t stop.
I guess chronic illness is teaching me how to pivot, and my limits are redirecting me to places I hadn’t thought of going before.
I think that capitalism creates a culture where everyone hates the idea of a limit. We’re supposed to think anything is possible, there are no barriers to success but our ‘self-limiting beliefs’, or whatever. This is because it’s a system built on the farce of endless accumulation, and that’s an idea that I think contributes so much to ableism. There’s this fear of limitation — people don’t want to accept that it’s just the reality of being in a mortal body, or of being alive at all. Limits are containers and boundaries, but they’re also scaffolding and support.
I think about this in an artistic sense a lot, because to me limits are crucial for creativity and meaning. It’s the difference between an AI-generated image and a hand-made one — unlimited possibility churns out a kind of sterile and soulless image, whereas one made by hand has flaws, and those flaws are what make the image interesting. The limit of what you can do with the materials you have in front of you becomes a container for creation, and rather than thinking of it as holding the artist back, we could think of it as a kind of support that makes the art possible.
And this is not to glorify suffering or impairment as like always teaching us a valuable lesson or whatever, a lot of times pain is just pain and it fucking hurts. A limit can genuinely just suck sometimes, but it can also open up a portal to a new place, new ideas, and new kinds of wisdom. Disabled people have knowledge and things to teach, and that’s something we could revere as a culture if we weren’t so averse to reckoning with limitation.
Johanna Hedva writes that ableism is a defense against the frightening truth that our bodies will break down and eventually die, and I think cure-centric stories are popular because they sooth that fear — the idea that you can fight and overcome any ailment is comforting, even if it’s not true. I think to make a society that supports disabled people, we of course would have to unlink our worth from our productivity, but we would also have to stop running from grief and loss and limitation.
But I don’t know, I’m still figuring it out, and I still feel shame and get frustrated with my body all the time. What’s helped me the most is just surrounding myself with other disabled people who get it, who I don’t have to explain myself to, and who aren’t going to think I’m a bad person if I disappear for a while or take forever to do something or show up late or cancel last-minute, because they’re also doing all that too, and we have a lot of grace for each other.
vōx: The shame of feeling like you can’t keep up with the pace of the world is so real. I’ve really been struggling to disconnect my value from a capitalist mindset of output. But I still feel broken sometimes for not getting my to do list done on the timeline I set for myself.
I love the idea of embracing non-linear time. To me that feels like being more present. I’d be able to move with the flow of the seasonality of chronic illness and let go of my rigidities.
What you said about limits being scaffolding struck me. Maybe that’s what the cocoon of metamorphosis is. A boundary that holds the transformation. I keep wanting to break out of it, but maybe the structure itself is what allows something new to form.
I find that in creative work too, the boundaries of my body have become part of the art. Honestly, I don’t know if I would have explored writing on Substack without the limitations of my body pushing me from my previous career as a musician. But through those limits, I’ve discovered a new expression here that’s truly changed my life.
I’m grateful for conversations like this, because they remind me that maybe living well inside the metamorphosis isn’t something we figure out alone. Maybe it’s something we learn from witnessing each other do it.
Jesse: Yeah, I don’t think we figure out much alone! I love how the internet allows me to tap into other people’s heads and learn about experiences I never would have otherwise. I’ve learned so much about myself by reading other people’s writing online and being like, wait, I feel that too, that happens to me, “I have never had a unique experience” (as they say on TikTok), and honestly, thank god for that!!
I come back to the theme of non-linearity over and over again, because I think it’s such a core aspect of neurodivergent experience, but it’s also huge for anyone who’s chronically ill, or exists outside the dominant norm in other ways. Disabled theorists call it crip time, in queer theory there’s the concept of ‘chrononormativity’, Rasheedah Phillips put out a book last year on how the construct of linear time has been shaped by racism and colonization — she actually calls writing ‘time manipulation’, which I think about a lot.
People find stuff I wrote years ago when I was a different person in a different time, but they experience that now, because I put it into writing and sort of froze it in time. It’s like we leave little pieces of ourselves for other people to find in the future.
Care Beyond Cure
vōx: It’s beautiful and so non-linear that whenever people discover our work, it’s reborn. It’s new again through someone else’s life. That kind of non-linear witnessing feels like a form of care in itself.
If the goal of medicine with chronic illness is “preserving integrity of the person,” do you think medicine as it’s currently practiced is even capable of that? Or is it something we mostly find outside of medicine, in art, community, and self-invention?
Jesse: It’s hard to preserve anyone’s integrity when medicine is designed to maximize shareholder value! I think only truly socialized medicine could do that. Chronic illness is complicated and caring for it requires a lot of time, there’s so much tracking and trial and error and especially when you have multiple overlapping conditions, it can be so individual and specific, you can’t get good care in a 20-minute appointment.
Toombs writes in that essay that doctors need to not just treat the illness, but talk to the patient about how the illness is affecting their lives, and to act as a confidant and advisor that helps them integrate it, but I’m not sure this is a big part of the job description for most doctors, at least in the US, and again I would contribute that to just straight-up lack of time, and the structure of healthcare being designed to increase profit rather than improve health.
I always wonder what medicine would be like if it was still an art that was practiced by a healer in your community, someone you had a genuine personal relationship with, not a professional separated from you by institutions and elite credentials. Barbara Ehrenreich and Deirdre English wrote this interesting pamphlet in the 70’s called Witches, Midwives, and Nurses that traced the history of Western medicine as a hostile takeover by upper-class men — what used to be an art practiced by women-healers who learned through passing down knowledge was made into a profession that required years of expensive training in universities, which then, of course, women were legally locked out of.
This was bad for the poor, who got their medical care from healers and doulas in their communities, and it was bad for medicine, because it stripped the practice of its more holistic nature, something that was embedded in the community and not above it in an ivory tower somewhere.
We know that the doctor-patient relationship has healing qualities in itself, but it’s almost impossible now to have a genuine relationship with a doctor because of how medicine has been professionalized and turned into an industry. So many of us end up with these really hostile, antagonistic relationships with doctors, where they’re essentially acting as gatekeepers that we have to haggle with to get the resources we need. I want to believe that most people get into medicine because they’re genuinely interested in it and want to help, so health capitalism is really a shit deal for doctors’ integrity too!
I think there’s definitely an existential aspect to chronic illness that a medicine which strictly focuses on pathology can’t really treat. I’ve found acupuncture really helpful in the past, even though there’s not really any good biological proof for it. I see it as a kind of care ritual, and maybe that ritual, like the experience of a good doctor-patient relationship, has healing qualities.
I find a lot of healing in making stuff, though, so maybe I’m biased towards art in that way. It’s also the closest I get to a spiritual experience, so I can’t really live without a creative outlet, which is why I think crochet has been so important to me this year. It’s really scary as a writer to have days and weeks where you can’t think — it’s a real threat to preserving my integrity as a person!
vōx: All of us with chronic illness have experienced firsthand how medicine in the US is treated as an industry rather than a public service. The only positive experiences I’ve had with doctors in the US have involved private specialized appointments where the cost is out of pocket and astronomical. Even more proof that the solution cannot exist within our current profit-driven systems.
I’m really moved by how you describe creativity and ritual as forms of healing. It makes me think that maybe art is medicine’s forgotten sibling. Both are ways of touching the ineffable, of making meaning out of pain.
Thank you so much for sharing this space and conversation with me, Jesse. It’s been such a grounding and inspiring exchange. Before we finish, I’d love to know what’s been bringing you joy lately? And is there anything else you’d like to share?
Jesse: Thank you for inviting me, your questions have been so thoughtful and generative!
Lately I’ve been learning how to bake, which I always thought was really hard for some reason so I never tried, but it’s actually not. I think yeast and fermentation in general is so creepy and cool, I love how it’s like a science experiment you get to eat at the end. I get a lot of joy out of cooking for people. I’ve also been loving really repetitive crafts, and I’m getting into knitting. The rhythm is so nice, it puts me in flow immediately. And I’ve been going to the library! My favorite place!
Check Out Previous Conversations Behind the veil:
Such a great interview. I could relate a lot. These days I‘m slowly starting to accept that I too function at a slow pace. 🐌 I got sick at 18 and until now (36) I‘ve tried to not fall behind and perform abledness and neuronormativity. I say, no more. The ‚anything is possible‘ lie is so so damaging!
another beautiful offering from two personal faves from within the crip realm. 🖤