What started out as a bad migraine led to a diagnosis from an ER doctor as Intracranial Hypertension, a condition that affects under 200,000 people in the United States. After that, the doctor in charge of care decided that care wasn’t a necessity.
When I woke up that morning on August 22nd, I felt perfectly normal. Granted, normal for me is a pain level of about a 5 or 6 for most people on that absurd scale given my fibromyalgia, chronic migraines, and other conditions. But I wasn’t experiencing any of the kind of pain that makes me scream or sob or pass out, so it was a good day so far.
Shortly after showering and powering up the computer for the day’s work, I noticed something extremely unusual in my vision: what looked like clear worms with pulsating, multi-color bodies slowly moving around the left sides of both my eyes. Having watched many episodes of Monsters Inside Me, I told myself, “Don’t panic! It’s probably not what you think! …Please don’t let it be what you think!” Luckily, it wasn’t a worm or any sort of parasite. It was my first aura from a migraine, but I wouldn’t learn that until the end of my ER trip six or seven hours later that day after a slew of tests and swarms of medical staff.
Here, I made an animation for you to get an idea:
A visual aura can be a frightening experience for those who don’t know what it is; hell, it can be frightening in general to have your nervous system produce worm-looking things in your vision even if you do know. I’ve had migraines for years, but this was my first with an aura, and since I wasn’t experiencing the familiar head pain at that moment, I had no clue what was happening, so I felt frightened.
The most frightening part, though, was when I lost my vision in my left eye. The lower left third or so of my left eye’s vision just went gray. I waved my hand there and saw nothing and immediately panicked, bursting into tears and clutching my partner, “I can’t see. I can’t see!”
Funnily enough, a brief moment later, the aura stopped, and I opened my eyes again, startled out of my tears, and my vision was back. Later, I would realize that each of my eyes now has a seemingly permanent gray spot of vision loss on the outer portion of each eye, in the same lower region as the major vision loss.
During this time and in the few days prior to it, I had experienced the same stroke-like symptoms I often get with my migraines: slurred speech, brain fog, difficulty speaking, the beginnings of migraine head pain in addition to the near constant headache I always have (and forgot to tell the medical folks about), nausea, blurred vision, and excruciating pressure in my eyes from my blue light sensitivity that is almost always present. Shortly after the vision loss, though, I also experienced a persistent numbness and a pins and needles sensation in my left arm for about 45 minutes. It was at this point that I reluctantly decided to go to the Urgent Care center a block away from my home.
I had been hoping to avoid the doctor because I had just finished a summer’s worth of specialist bi-annual followup appointments for my various chronic illnesses and disabilities, along with my annual physical literally a week before, and I had been very much looking forward to the respite between August and my next followup in February. As a spoonie, it’s an unfortunate reality that those of us who are privileged to have healthcare access end up spending much of our lives ensconced in the medical system for much more than we care for.
I was also reluctant to go because the last time I had been to the ER for similar stroke-like symptoms, I had learned it was the non-life threatening migraine, so I wasn’t keen to go to the doctor just to be sent home again with the knowledge that I wasted my time on that same shitty diagnosis.
I knew the vision loss and arm issue was likely a problem, though, so I did the decidedly un-sexy self care of dragging my ass to CityMD. Less than five minutes after seeing the doctor, she immediately referred me to the Emergency Room to get a CT scan, expressing her concern about the vision loss since she said that doesn’t occur with migraines.
“Damn it. I knew I should have brought my book and headphones,” I thought to myself.
It had really been hopeful thinking, apparently, that this was all just a migraine and I would be sent home right away.
The doctor called for an ambulance to take me there since I was afraid of being alone with my symptoms and also because of my significant heat intolerance and fibromyalgia flaring up in the heat of the day and on a long walk to the hospital which was not near my home at all.
The EMT who sat with me in the ambulance was such a kind soul. I was really anxious about what was happening and nervous about getting a CT scan for the first time, which I knew exposes you to about a year’s worth of radiation, and they really helped me not to drown in my anxiety. I was grateful for their help but also for their way of interacting with me; it was so patient and considerate. Seriously, bless the EMTs of this world, as well as nurses. Y’all have often been some of the kindest, coolest people I’ve met in the medical field; thank you. ♥ [heart]
When we got to the ER, I was nearly immediately surrounded by a team of more caring people, asking questions about my medical history (which I rattled off quickly because I’m basically a professional patient lol), asking about my symptoms, testing my neurological response, and so on. The doctor was also a very kind person that day, and I’m super grateful for their care, as well. ♥ [heart]
As predicted, I did need to go get a CT scan, and after a quick blood draw and urinalysis, I waited with my partner who came from work to keep me company and take me home afterward. We joked around and talked about our concerns, passing the time anxiously as we waited for my turn in line.
When it did come, I was rolled down the long labyrinth of off-white halls in my awkwardly positioned hospital bed, into the off-white room with the CT machine in it, laid down on the flat bench with my head in position, and was tucked in by the attending medical staff before slowly being positioned in the scanner.
It was over quickly. We had to wait a little under an hour for the results, so we went back down the long, labyrinth of halls and waited (im)patiently for the results.
When the doctor got word of the results, they came over to me, and I knew it wasn’t anything good. The usual, “Oh, we got your tests back and everything was fine. It’s likely just a migraine” wasn’t written on their face. They had the face of someone bracing to say something unpleasant.
I think I winced when they told me the diagnosis: intracranial hypertension (IH). Luckily for the doctor, I was already well-versed with the condition and didn’t need much of an explanation other than those two words.
“Damn, I was hoping that wouldn’t be it.”
I’ve been seeing a neurologist for the last two to three years now who has suspected the beginnings of IH based on MRI images of my brain and some herniated brain tissue (that I now know is the likely culprit behind the herniation). I looked up as much as I could the year he told me about it, and it’s haunted me over the last few years since he refused to order the only diagnostic test known — a spinal tap, also known as a lumbar puncture — telling me he wasn’t ready yet to order one. He referred me to an ophthalmologist to check for papilledema, a common hallmark of IH, which came back as slightly suspicious in my left eye — the same I lost vision in that ER trip day — but without any blatant papilledema.
This is the doctor the ER doc called to inform of my diagnosis, the doctor who told me to come in immediately the next day for further testing and followup care. This is the same doctor this article is about, so you already know where this is going.
I should explain that I’m a fat AFAB (assigned female at birth) person, which is what makes up 95% of the people who are diagnosed with this rare condition. Fat shaming, as informed people will already be aware of, is a deadly, deeply embedded bias in the medical industry. It’s the reason why I have been told by a doctor that she will refuse to send me for testing about my endless pain and overwhelming fatigue (that later turned out to be fibromyalgia and chronic fatigue) until I lost weight; it’s the reason people have been forced through life threatening surgeries; it’s the reason some people nearly die; it’s the reason some people have actually died. Fat shaming is dangerous and deadly, especially in AFAB patients who are already under researched in and under served by the medical industry based on not just individual medical staffs’ prejudice but also because of misogyny, racism, ableism, and anti-fat bias in the very roots of the medical industry: education and research.
Unfortunately for many of us, we are told that before we’re allowed to access the most basic necessity of treatment — diagnostic testing — we must first lose weight. Often times, we’re told to our faces that we’re only suffering because we are fat. Sometimes we’re lucky in being able to find a doctor who actually does their job and tests and diagnoses and treats us, but unfortunately, too many are not and suffer the consequences for it. I am not the first nor the last person this will happen to, sadly.
My neurologist and I have had frank discussions a few times before about my weight in which I explained thoroughly that I have a restrictive eating disorder (ED) (coupled with obsessive exercise to induce weight loss) that I have been recovering from steadily and am currently doing pretty great with, that discussions of deliberate weight loss are triggering for my ED, and that I would not entertain the notion of deliberately pursuing weight loss as a kind of treatment for anything because of its risk to my health.
We have also discussed in depth that my eating consists of as much nutrient-rich foods and as little processed foods as I can manage with my energy levels and access to resources. I don’t do this to be a “good fatty” — I have to do this to maintain my fibromyalgia symptoms. And I want to do it because — gasp! — I genuinely enjoy eating vegetables.
In addition, we have discussed my mobility issues in hindering my ability to exercise as much as I would like to. I grew up as a very active kid — sports and competitive dance were my thing, and I continued to pursue a bit of dance in college, as well as muay thai. Fibromyalgia has stripped much of my ability to pursue the active levels I miss very much, whittling my mobility down to barely being able to handle 10 minutes of standing and a few city blocks of walking before my extreme fatigue and chronic pain flare up to overcome me for days at a time. I pay dearly for every ounce of physical and mental exertion I engage in, so I have to be very careful about where I invest that ability, and it’s usually spent on simply caring for myself, my home, my work, and my life in general.
So my doctor knows very well that weight loss is not a viable “treatment.”
So let’s go back to that appointment now, shall we? I had spent the night before crying and raging about this latest diagnosis, angry about the systems that go into its lack of research and study, angry that I have yet another health condition to deal with, furious at the potential and new traumas that were likely in my future, none of them with a silver lining. I woke up dreading the appointment, unhappy that I would now need to get a spinal tap but also relieved to finally know THE answer to the question: have I developed IH yet?
I went in to my hastily scheduled appointment expecting to discuss the diagnostic test necessary, to discuss treatment options now that we’re at the arrived moment, to figure out the next steps in this diagnosis. I had braced myself for the potential, ever-looming fat shaming, but I had a bit of lingering fury in my body from the sheer emotional exhaustion and drainage that comes with such a visit and diagnosis.
I didn’t expect to hear my doctor refute the diagnosis in its entirety, chalking it up to an ocular migraine, without even wanting to discuss ordering a spinal tap. I didn’t expect him to both refute the diagnosis and simultaneously say a few minutes later that I still had the signs of it developing. I didn’t expect to hear what can only be described as a tirade against the evils of the one diagnostic exam that can verify or eliminate this diagnosis that could lead to irreparable optic nerve damage and permanent blindness. I didn’t expect him to spend ten minutes condemning the procedure as unnecessary and dangerous and, in the last two minutes of our appointment, point out that there was a spinal tap with fluoroscopic guidance that nearly eliminates all the undesirable side effects of the procedure. I didn’t expect to need to explain why I wanted to know for sure via a diagnostic test if I indeed have a condition that could increase my chance of stroke, especially given my family history of stroke.
I didn’t expect for my doctor to tell me that I didn’t actually experience and am not continuing to experience vision loss, that it was just my brain — as though that would somehow make it any less of an issue and magically make my brain not have hypertension at the same time as vision loss from ocular migraines. I didn’t expect the same doctor who had urged me to avoid tetracycline antibiotics because of their link to causing IH to dismiss my history of exposure to them as well as the Mirena also linked to IH, well enough that there’s a multitude of lawsuits against the company that makes it.
I didn’t expect to be told by my trusted doctor of two to three years that because I had an exam with my ophthalmologist two to three months prior to this incident and had not shown any papilledema that I couldn’t possibly have IH — despite he himself saying (along with research concluding) that IH can present without papilledema in a significant portion of those diagnosed with it.
I didn’t expect my doctor, who is familiar with my complex medical history of multi-system issues, including issues that are related to other known causes of IH, to dismiss my IH as being simply caused by being fat. I didn’t expect a man so well versed in the exploitation of misinformation in the medical field coupled with a lot of reliance upon insufficient knowledge about certain conditions and their causes to dismiss the idea that a multiply disabled and chronically ill person could have a cause of IH that is yet unknown in this under-studied condition.
I didn’t explain to be told that he was “protecting” me from a medical procedure that could help me. I didn’t expect to be told that I hadn’t yet experienced “real pain” like that of a lumbar puncture. I didn’t expect to be treated as though I were being unreasonable and hysterical for wanting to get confirmation of a diagnosis from an independent doctor who had taken one fully medically trained look at my brain and my concurring symptoms and said, “Yup, that right there is a rare condition that mimics a brain tumor.”
I didn’t expect the pain I’ve experienced throughout my life —childhood abuse, rape, workplace violence, social isolation, sexual assault, endometriosis and adenomyosis so violent I would throw up, a hysterectomy for them both, fibromyalgia, a long history of wretched reactions to medications, a lifelong history of serious and terrifying infections such as pneumonia while having asthma, a series of various “smaller” surgeries including one where the local anesthetic didn’t fully take effect while I was being cut open, a history of severe lactose intolerance as well a history of multiple and growing food and medical allergies that all cause intense gastrointestinal suffering to the point of nearly blacking out from pain, chronic migraines with photosenstivity to blue light, a horrible adverse reaction to the Mirena IUD that couldn’t be helped with even 2400 mg of ibuprofen at once and eventually forcing the removal of the IUD weeks later, experience with stomach ulcers from said use of ibuprofen, experience with withdrawal from medication prescribed by an uncaring and money hungry psychiatrist who was shortly imprisoned for his abuse later, bilateral bone spurs in my heels that prevent pain-free walking, the self-hatred of an ED coupled with decades of internalized misogyny and ableism, years of experience being gaslighted by doctors about my health before finally accessing answers and mild and insufficient treatment, the agony of being estranged from family bonds because of their abuse, and suicide attempts and self-harm and depression— to be dismissed as not being “valid” pain experiences because my white cis male doctor somehow knew a secret about pain that I’ve never yet encountered and therefore would be incapable of handling.
I didn’t expect any of this, but I got it anyway.
I also got a good dose of that anticipated fat-shaming. Even when I reminded my neurologist of everything we had discussed — my ED, my food habits, my mobility limitations, and so on — even when he himself said he doesn’t believe in diets because they simply don’t work — he said with a shrug and averting his eyes, “I don’t know what to tell you other than that if you don’t want to develop intracranial pressure, losing weight will do that.”
I asked him, hoping to myself with the last bit of faith I had left in him that I was simply not matched in his education and experience on the subject and was just overly anxious about the difficulty of the diagnosis and the last twenty-four hours — I asked him, giving him room to assuage my fears that he was resorting to his biases — I asked him, hoping he would see how important it was to me to get some kind of conclusive answer so I could sleep better — I asked him, “At what point would you be willing to consider ordering a spinal tap?”
He refused to answer.
In the end, my neurologist told me, as though offering a compromise to a whiny baby in need of a nap to feel better, “Call me in four weeks to let me know how you feel.”
As though those four weeks will prove to be any different than the last few years of my life.
As though he has any intention of ordering a diagnostic test or providing any treatment, even if it’s one that only has a 50% chance of success (coupled with significant complications and side effects) before needing likely multiple brain surgeries, as well as potentially needing surgery/ies on my optic nerve/s.
As though if I do truly have IH, as officially diagnosed by the ER doctor, those four weeks of delaying treatment won’t have any adverse effects or encourage papilledema growth where there may or may not be some now.
I come from a history of significant childhood abuse, especially regarding my disabilities and differences. The best example I can give you of this is when my mother forced me to stop taking my Tourettes medication at fourteen because she said, “You don’t actually need this medicine. You’re just doing this for attention; you could stop anytime if you wanted to.” It didn’t take long for my Tourettes to act up again after the medication was taken away.
Growing up as an undiagnosed autistic person with an ableist parent was difficult, too.
“You never appreciate anything I do for you.”
“You’re such a drama queen.”
“You’re so ungrateful.”
“You’re so selfish.”
“You have such a bad attitude.”
“No wonder you got bullied!”
“I don’t understand why you have to be so difficult.”
“I don’t understand why you can’t just behave.”
“I don’t understand why you won’t just do what I tell you the first time.”
“I wouldn’t have to do this to you if you would just listen to me.”
Sticking up for myself with authority figures after an entire childhood like that is an enormously difficult task that I have constantly been forced to work on against my will, especially given doctors’ implicit biases against bodies and minds like mine.
But dammit, I’ve been getting better bit by bit. I’ve grown too tired from dealing with doctor after doctor who refuses to help me because they refuse to look past their prejudice. And I’ve done it with the help of loving friends who don’t hesitate to share their righteous anger and indignation at the medical trauma I’ve endured, the support and love of my long time partner, and the radical communities online that share resources, support, encouragement, rebellion, and reclamation.
I can’t let this stop me. I won’t. I’m too stubborn to give up and just let this diagnosis-in-limbo take over and do with me what it wants. But I’m afraid, too, because I’m too fucking tired, too. My body can’t keep up with this demand forever, and at some point, I have to live my life.
I really hope I can fight like I want to. I really do. I also really hope that my neurologist is right and that I don’t have IH because simply thinking about that and the implications of it all is such a level of exhaustion that my brain actively takes steps to block it out — and my mind doesn’t do that with much aside from trauma.
I hope I get the diagnostic test that I really, really don’t want to do to my body. Spinal taps come with lots of possible, awful side effects that sound like the absolute last non-surgical procedure I would ever want to have in my life.
I really hope people who are privileged in ways that I’m not will take up the cause against all the horrible things I’ve shared with you here.
Fat people deserve better care. BIPoC deserve better care. Disabled people deserve better care. Poor people deserve better care. Age-oppressed people deserve better care. Immigrants deserve better care. Intersex people deserve better care. Queer and trans people deserve better care. Women deserve better care. We all deserve better care than we’re receiving at the hands of this fucked up system.
I don’t want to be typing this article out or to be sharing this deeply personal and traumatic intimacy with you here online. But I feel I have to because screaming into the void and raging privately with my loved ones has yielded nothing. I have to join the cacophony of voices speaking out publicly against these issues and say,
“THIS IS HAPPENING TO ME, TOO.”
Give me doctors who aren’t educated by the weight loss and diet industry.
Give me doctors who understand that the BMI bullshit was created by an astronomer and mathematician who never intended it to be used as it is today for human beings; give me doctors who understand the harm caused by the BMI’s scientific inaccuracy and ludicrousness.
Give me doctors who understand social issues and oppression and take them into consideration for diagnoses and treatments.
Give me doctors who pair up with social services to provide actual well-rounded treatment to every patient.
Give me doctors who actively work to undo the oppressive systems within all of us and strive to always improve their care of their patients because of that work.
Give me doctors who call for and encourage and rely on studies that are done ethically and with anti-oppressive work, centering that ethical research on those of us who are most marginalized.
Give me doctors who are teammates rather than controlling “leaders.”
Give me doctors who don’t force their patients to “prove” they can handle a procedure or treatment by parading out old traumas as evidence of their “strength.”
Give me doctors who respect and believe patients about their symptoms and experiences and self-education and desired courses of care and treatment.
Give me doctors who actually help their patients in moments of need and pain instead of delaying and denying treatment and effectively worsening the situation and the patient’s quality of life — and indeed sometimes the patient’s life.
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