I have spent most of my life on the receiving end of a particular gesture. It does not always look the same. Sometimes it is a doctor’s hands lifting slightly off a desk. Sometimes it is a sentence that ends with “there’s really nothing more we can do.” Sometimes it is a policy that gets tabled, a species that gets ignored (Monarch Butterfly), or an ecosystem that gets quietly written off as already gone. 

The gesture is the same every time. It means: this is not worth fighting for. It means: we have decided the cost of caring is too high. I know this gesture all too well in examination rooms and in the natural world both. I have a name for it now. I call it “the shrug”.

Now somewhere along the way, Ehlers-Danlos stopped being an answer and started being a door slamming in my face every time I wanted to leave my room.

I know that sounds dramatic. It isn’t. When I was finally diagnosed, I thought: okay. Now we know. Now someone can help. Now things will get better. But the longer I live with this, the more I’ve watched that word become a reason to give up and stop trying. Every time a doctor walks in, they say “it’s tied to your Ehlers-Danlos,” and what follows isn’t a treatment plan. It’s a shrug dressed up in medical language that means no cure, no help, nothing we can do. Go to the ER when things get worse, as if the ER won’t make it worse. This spans all the “ologists” I have seen so far and it’s at least 6 of them. 

At some point this year, I will have another log focused entirely on the ordeal, where the word Ehlers-Danlos itself got absorbed into my C-PTSD. I hear it now and something in me braces. I dissolve into the memories of past medical neglect and torture. That story will be told later. 

For now, let me tell you what Ehlers-Danlos Syndrome actually is, in my language, because most people have never heard of it and the ones who have usually only know the bendy joints version. I also have a point at the end of this. Promise.

There is management, which is a word doctors use when they mean you will be doing this forever and we will be of limited help. Especially when my body cannot metabolize most anti-depressants, pain medications, and nutrients correctly. Day after day is excruciating. And the only person who can advocate for you? Is you. Just be wary that everywhere you go you will be met with “The shrug”.

I know this better than anyone because I watched my father go through all of it. He died at 53, when I was 17, of things that were dismissed, ignored by him, and passed over fully until they couldn’t be anymore. He was the kind of person who didn’t go to doctors. He was too prideful to go. His ego was especially destroyed over these issues. Given what I’ve experienced inside examination rooms since then, I understand why.

My father’s biggest “shrug” that he ever gave himself and that the doctors gave him, was his colon cancer. Not only was it ignored in the context of EDS, but he was too embarrassed to advocate for himself given the symptoms. He went sick day after day for years and succumbed to it eventually. The hospital confirmed all of this after he was gone. The timeline follows when he started behaving differently when I was 13. I wonder how much he knew, but ignored.

I now carry his diagnosis and symptoms that are similar with his story, and I’m at the part where his story ended. I have about two weeks left before I do the procedures that his PTSD and pride refused, which ultimately led to his death. I think about that more than I let on, because I carry similar PTSD themes that has led me to avoid this for four years now, myself. 

Four years of suffering has finally led to me understanding that I can’t “shrug” my problems away just because everyone else does. If I shrug, my kids will shrug, their friends will shrug. It’s contagious, terminal, and my symptoms can’t be ignored anymore. Any day I could be in the hospital again needing surgery because of how long I put off getting help.

Outwardly, EDS explains some things people see and don’t always ask about. Like why my face looks the way it does. Why some days you see me standing like a baby deer trying to remember how legs work, and other days you see my wheelchair. It is the reason behind my daily pain, my mental health, the thirteen natural teeth I’ve lost, and the bruises that appear from simply trying to stand. EDS is also the root system of almost everything else wrong with me, and that list is long. But to understand the list, you have to understand the order it arrived in. Because I swear if doctors and people in power didn’t “shrug” me off? I would still be biking 30 miles a day, running marathons, and not sitting in this wheelchair with legs bruised in a mosaic across almost every vein from trying to walk. 

I was diagnosed autistic before anything problematic occured. Diagnosed in 1999, when I was around 7 years old. Autism is not a disease, but it is a huge part of how I experience all of this. The sensory processing, the way pain registers differently, the masking that costs energy I do not have to spare, the healthcare interactions that are already traumatic and become more so when communication differences add another layer. When my body is in crisis, my brain processes it in a way that is not always legible to the people in the room with me. Sometimes not even me. 

In 2016, I nearly didn’t survive long enough to be diagnosed with any of the rest of it.

That was the year I had an unexpected pregnancy rupture. By the time I had walked into the ER after working eight hours as a dishwasher, approximately two liters of blood had pooled in my pelvis. That is the kind of internal hemorrhage that kills people, but I survived it after being resuscitated. I shrugged off the pain, thinking my monthlies had started. If my mom hadn’t noticed my pale body in an emergency as I drifted off to sleep that night, I wouldn’t be here. That left me with medical PTSD of my own body that I carry into every clinical encounter since, and it festers underneath the event I mentioned at the start of this entry, but will explain later… Basically, vascular fragility was part of why the rupture was as severe as it was. My blood vessels do not hold the way they should. They never have, but how can I trust my body if it doesn’t even tell me it’s about to die?

Then I got really sick in 2019 and that was the moment I would never fully recover again.

It started with IBS and GERD arriving at the same time. The IBS meant unpredictable cramping, bloating, and a sudden urgent need for a bathroom at any moment, triggered by seemingly nothing at all. The GERD meant acid reflux bad enough to cause chest pain, regurgitation, and a sensation like food simply cannot move downward. It feels like a heart attack every day, but I am perfectly fine. I am prone to peptic ulcers, getting about one or two every year. Lying down makes it hurt worse. Sleep gets interrupted regularly and stomach acid has taken a few more teeth along the way. During this period I started having trouble breathing and standing, so I shrugged it off. My doctor shrugged it off and moved onto the current problem. Oops.

A year later, in 2020, POTS joined the picture. Postural Orthostatic Tachycardia Syndrome is a dysautonomia, meaning my autonomic nervous system does not regulate my heart rate and blood pressure correctly when I change positions. My baseline blood pressure sitting down already runs around 78 over 46. That is not a typo. Seventy-eight over forty-six. When I stand up, my heart rate spikes dramatically to compensate as it tries to drop further, and the result is dizziness, chest pain, palpitations, nausea, brain fog so thick I sometimes cannot speak, and profound exhaustion that can only be cured with fluids and a nap. Showering is a calculated risk. Standing at a counter requires a plan. Heat makes it significantly worse. Dehydration makes it significantly worse. I faint every time I shrug off any one of these symptoms or reactions. I nearly faint going to the bathroom. I have learned to read the warning signs the way some people read weather, but so much is going wrong at once that it is hard to keep track of everything. 

Finally, In 2022, someone finally named the root cause. EDS. By then I had been sick for years and accumulating diagnoses that no one had yet connected to each other. The name was supposed to be an answer. You already know how that part went. Immediately my POTS, GERD, and IBS began being shrugged by doctors and specialists. The tests they wanted for the GI? I definitely shrugged off…

The IBS progressed to severe abdominal pain. Profound fatigue on top of all the other fatigue. Unintended weight loss with malnutrition that is ongoing and difficult to address. And with it came gastroparesis, which is a partial paralysis of the stomach. Food does not empty properly. It sits there for hours while I feel nauseated, severely bloated, full after three bites, and in pain. Certain foods became impossible. Eating went from a basic human act to a daily calculation of what I can tolerate, how much I can manage, and whether today will be a day my body accepts nourishment or I go to bed starving. I started a liquid only diet, it had gotten so bad. 

I also have absent hunger signals. My body does not tell me it needs food. So I eat on a schedule, trying to maintain calories I cannot always keep, losing weight weekly that I cannot afford to lose. You may be thinking or wanting to suggest feeding tubes or other interventions, but like the theme says, doctors do not care and shrug me off. 

To this day nobody seems to be bothered that I feel weak every day from malnutrition, that I go days without eating, days in bed starving while my stomach insists it will reject anything I try to put in it. The system does not care. I have learned to work around it as best I can, but I fear that time is ending and it’s scary. Welcome to southern Oklahoma.

The malnutrition and the progressive nature of EDS have probably furthered what is happening to my spine. In 2025 I was diagnosed with degenerative disc disease and ankylosing spondylitis. The discs are breaking down. The inflammation along the spine is progressive. More severe and different types of pain. Osteoarthritis has settled into my hips, my knees, and my wrists. Peripheral neuropathy runs down my right side, nerve pain that is notoriously difficult to treat alongside numbness, tingling, and a complicated relationship with sensation. I had to give up professional gaming. No medications work and the doctors just… shrug.

So now I practice qi gong and tai chi twice a week, consistently, because my body still needs movement even when movement is hard. My mind still needs moments to just do nothing. And not because it cures anything, but because it is one of the few things that gives something back. My muscle mass continues to decline despite all my efforts, but that is just the progressive nature of what lives in my body. *shrugs* 

Finally by 2026, I started having episodes that looked like strokes. Severe thunderclap headaches. abdominal pain so distended I looked about to give birth. Profound confusion and altered consciousness have become a weekly occurrence with speech difficulty, stuttering, losing words mid-sentence. Vision changes, Dizziness. Each one is an emergency that might be an emergency and might not be. After a while, the girl who cries wolf tends to go ignored. All my actual emergencies, I didn’t know what was happening until I was seconds from death. This was no different. 

A few months ago, the pressure behind my eye for months finally had a name: scleritis. Severe inflammation of the white outer layer of my right eye, causing intense pain, light sensitivity, cloudy vision, and excessive tearing. Here is the part that matters most, though. The redness is minimal to absent in my presentation. Providers who do not know my full picture look at my eye and underestimate how much pain I am in, because I do not look the way sick is supposed to look. The heart attack that was a heart attack, the rupture I worked a full shift with, the eye that looks fine. That has been the theme of my entire life, so everybody just shrugs.

For me, there is no pain-free baseline. There is no morning when I wake up and feel well. There is no version of my day that does not cost something. The fatigue does not resolve with rest. The pain does not resolve at all. I navigate a body in a constant state of managed crisis and I do it quietly enough that people are extremely surprised when I tell them any of this or when they meet me. 

That is the danger of invisible illness. Not the illness itself, but the shrugs you get from the invisible part. The way people see me functioning and assume function means living. I am not living, but forcing survival everyday due to the shrugs. I have learned to function anyway. Adapt to my best ability and try to communicate what I need the best way possible for whoever is trying to treat me. Maybe that’s why I love studying languages and communication. (Not that it helps.)

However, please know I am not writing this to be pitied. I am writing it because the Gazette exists inside all of this, and you deserve to know that.

I started this project to write about the natural world. About dying ecosystems and collapsing species and the policies that determine what survives. What I did not fully understand when I started is how much that work and this story are the same story. A species does not vanish all at once. An ecosystem does not collapse overnight. It happens in accumulated shrugs. A habitat gets written off as already degraded. A population gets listed as a low priority. A warning sign gets dismissed because the patient does not look sick enough or the numbers do not cross the threshold some random person drew on a chart one day. All because caring would cost something and it is easier not to. 

The mechanism is identical. The result is identical. Things that did not have to be lost get lost anyway, because enough people in enough rooms lifted their hands off enough desks and moved on.

This gazette was then reborn as a final gift I did not know how to use until I did. Thanks to my Mother, who gave hugs instead of shrugs.

 I write it because when you have spent a lifetime watching systems fail the things they were supposed to protect, you recognize the pattern everywhere. In a doctor’s office. In a legislative hearing. In a field where something should live, but can’t anymore.

My father’s death was preventable, my health should treatable, and the natural world is losing things right now that do not have to be lost, if only enough people paid attention and refused to accept the shrug.

That is why I write. Not despite any of this. Because of it.