Stories about connective tissue disease: "I have no mouth, and I must scream"

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Stories about connective tissue disease: Closeup portrait photo of a pensive young woman with long dark hair, black brown eyes, looking directly into the camera. She is wearing a white plaid shirt and is standing against a brick wall.

"I Have No Mouth, and I Must Scream" is a personal essay written entirely in bed by the writer while she was recovering from a recent leg surgery. The piece is emotional and raw, but also serves as a means to provide an urgent critique on ableism, inaccessibility, and gaslighting within medical care in the U.S. While the essay centers the writer's personal experiences with chronic illness and disability, the greater intention of the piece is a call for change, inspired by essays from many, many disabled folk before her who also endured harmful and inadequate healthcare.

Stories about connective tissue disease: "I have no mouth, and I must scream"

As I recover from my second leg surgery in the last decade, the emotional weight of no longer having one "good leg" is difficult to reckon with.

I haven't been able to leave my room for seven days now, and my spirit at the moment is broken. I'm tired, I'm in pain, I'm scared, and I'm sad. All of this has left me feeling devastated, for lack of a better word. In fact, I'm feeling devastated about a lot of things right now.

I'm devastated about how my heartache is spiraling, even as I pet my puppies and half-watch Impractical Jokers (my go-to comfort show). I'm devastated about how unproductive I'm being, how gradually unproductive I have been since the onset of my illness at 23, and about how loaded the word "productive" even is. It seems to be a thinly-veiled way for others to assess how much (or how little) you're worth to them or how much you'll inconvenience them if you continue to stay in such a perpetual state of unprofitable inertia.

That mindset is evidenced by every disabled person's long, drawn-out battle with state departments of human services: "You're not disabled enough to not have to work at all. Surely you can work part-time!" Leaving aside the obvious implication of this logic that disabled people deserve to live in poverty at best, it's clear that they don't want to fund anyone's ability to simply survive without something in return unless absolutely, unavoidably strong-armed into it.

I'm devastated that after six years, multiple falls, two leg surgeries, umpteen dislocations and subluxations, and a plethora of invasive procedures, the doctors still won't (not can't) listen to me when I tell them I'm scared and in pain. 

It's easier, instead, to call me hysterical or confused or too big or "not trying hard enough." Recently, a doctor I trusted--which, given my background, was monumentally difficult for me to begin with!-- told me that my crying was a "red flag." It was simpler, I suppose, to put the onus on me to behave "properly" than to reconsider her bedside manner.

Read more: Stop saying crazy woman

I am so tired of the lack of accessible care

I am so tired.

My experience, however, is not a unique one at all: rather, it's so commonplace among marginalized people that it's become a vile, familiar tune. In my personal case, I am immensely privileged to have accessed the care that I have, and I can only speak to my own experience. But while I know logically that kind and nurturing doctors do exist, they have by and large not existed for me, even amidst my privilege and relative wealth of resources. 

The "best" doctors and medical care seem to be elusive like hidden treasures—and are usually adorned with sky-high price tags. Ultimately, the risk of more futile, dead-end appointments weighs heavily on my bank account, but the bigger picture is that medical care in this country has a grave inability to provide accessible care to many, if not most, people living in the U.S., and that is sickening in and of itself.

Stories about connective tissue disease are ridden with medical gaslighting

This whole experience feels like a nightmare, but it isn't one because there's no waking up to anything different. Was it Ellison who wrote, "I Have No Mouth, and I Must Scream?" But that was science fiction, and this isn't. The pain, the medical gaslighting, being treated like a science experiment rather than a person—yes, I think you could call that devastating too.

After years of being turned away and ignored, I often feel like I'm trying to shout in a dream, but the only thing I'm expelling is hot, muffled dream breath rather than coherent words. 

But G-d knows, at this point, while my leg is throbbing and I'm staring at these arrogant canary walls, I'd be remiss if I didn't at least try to break my silence on this now. At least in spaces, I feel safe enough to do so before or if I decline again. There are days when I can barely talk or write at all, and I never know when the next bad day will hit. I can't continue to pretend like any of this is normal or okay. That would be a travesty.

The thing is, the nature of many autoimmune diseases—in my case, a connective tissue disease—is that we simply don't know how much worse they'll get, better they'll get, or anything liminal thereafter or in between. 

I can never guarantee my friends that I'll be alert enough to marathon anime for a girls' night in, or that I'll be well enough to visit my parents every night for Hanukkah this year, or that I'll be up for exploring a new town with my partner after a long road trip. I can do these things. I do, do these things. But not nearly as much as I want to, and not without careful forethought and backup plans. It kills me every day because these moments keep me going more than anything in the world. And I have missed so many of them. And I will miss many more.

Ableism is more devastating to me than my connective tissue disease

I'm devastated, not because of my poor mobility and ceaseless illness (okay, maybe partly because of that), but really, truly, because I have been bullied into the silence and shame I carry with me wherever I go. Because of the pervasiveness of ableism and inaccessibility not only in the U.S. healthcare system but in most aspects of day-to-day life, things I myself disappointingly overlooked before I got sick. It's impossible some days to not believe the harmful rhetoric that living in a disabled body is some kind of personal failing or a less meaningful way to be human. 

Read more: Chronic illness and shame

I often feel burdensome simply in my mere existence, and I have heard this same sentiment in others who also occupy chronically ill and disabled bodies. I, alongside so many others, have to battle pain, fatigue, dizziness, and potentially fatal falls - the list goes on ad nauseam, which reminds me! I forgot to add nausea to that list - constantly, brutally, and often completely alone.

Without dragging this story on forever, I want to be clear that I'm not writing this for sympathy. I genuinely don't want or need sympathy at all. I just want to be heard. I think it's safe to say that everybody does. Other chronically ill folks before me are the ones who even made it possible for me to speak as candidly on these issues as I am speaking now. For years, I have kept this part of myself more or less under gauzy wraps because I was afraid of being disbelieved and gaslit again. I was afraid of letting everyone down. I am afraid of letting everyone down.

But with all I have experienced since my early 20s and with all I know now, I feel confident in saying that I will be sick indefinitely. There's no magic potion a-brewing like the kinds in my favorite films (hello, Halloweentown and Hocus Pocus!), and the research for better treatment plans and medications is slow and unassuming. (Maybe, they don't think we're worth saving.)

Read more: Toxic positivity: why can’t you accept that my body isn’t getting better

So when I say I want to be heard, what I mean is that I want to live my life in earnest. I want others, both in and out of the chronically ill community to know these issues are real, serious, and in dire need of demystification. I speak these things even as I myself struggle with issues like internalized ableism and body-shame, but I never want anyone to feel as alone as I've felt these past six years, as alone as I do now, and as alone as I will most certainly feel again. 

If anything positive can come out of this, I want it to be that I've made even one other person realize that as isolating as chronic illness can feel, there are many of us out there. I believe you. I believe you. I believe you. Just as we all want to be heard, we all want and deserve to be believed, with our pain validated even if it cannot be treated. I hope I can do that for at least one person.

And with that, it's time to finally show myself a shred of decency too. So, now I must allow myself to rest as much as I need or can. And to be openly tear-stained, heavily flawed, and incredibly imperfect, complete with my swollen, gashed knee under a strawberry-patterned ice pack and my messy typos left and right from numb, imprecise fingers, which buzz rudely even as I clumsily try to type this. I'm now officially allowed to not bend over backward to please everyone but rather to make tidal waves for the things that matter so deeply not only to me but to my community as well.

In spite of it all, I want to spend the rest of my days in this realm doing what's within my capabilities to inspire joy in others and myself, even though I'll do so imperfectly. I'm in pain, and (not but) I laughed my head off earlier watching Best in Show with my partner. I'm in pain, and (not but) I had my favorite breakfast yesterday: a bagel with lox, cream cheese, and onions that my father made for me. I'm in pain, and (not but) I saw an immense amount of beautiful art today all around me.

I think we all have gentle little moments like that, and for those of us whose bodies hurt every single day, those gentle little moments can be especially precious and, in all honesty, not so "little" at all. In allowing our bodies to experience various types of joy in whatever ways we can (and heavens me, that looks different for us all!), we encourage ourselves to exist just as we are, no matter how uncertain we are about how tomorrow will look. I have never felt such inner peace as the times I was able to be gentle with myself. Jesus, does anyone?

Article by
Dylyn S

Dylyn (she/her) is a queer Jewish woman living with chronic pain, a connective tissue disease, three beautiful dogs, and a young hamster child. She often examines life through the intersection of these identities, especially through the lens of being a lifelong horror fan (because inaccessibility and ableism are true life terrors).


"The thing is, the nature of many autoimmune diseases—in my case, a connective tissue disease—is that we simply don't know how much worse they'll get, better they'll get, or anything liminal thereafter or in between." Photo: ©anoushkatoronto / Adobe Stock