#involuntary movement disorder

[devilboydogman]

Having a psychologically induced physical disability be like “sorry I can’t walk right now I’m sad.” And it’s completely unexaggerated and literal.

I’ve been in therapy for ten years, and have been inpatient, iop, and partial hospitals. I was taught unresolved trauma and stress can cause like. Stomach and heart issues, migraines.

No one ever told me whatever the actual duck THIS is could happen. Like yeah, my new normal is that crying and panic attacks and triggers make me jerk around involuntarily until I’m catatonic. Is that. How does. PLEASE TELL ME I’M NOT CASE 0 FOR THIS??? MY DOCTORS ARE SO CONFUSED BUT APPARENTLY ACCORDING TO PSYCHOLOGY PROFESSIONALS ‘YEAH, PSYCH DISORDERS CAN CAUSE THIS.’ While also seeming confused. I am baffled myself. Like huh???

[crippleprophet]

hey, i don't want to put you out or anything, i was just wondering if like off the top of your head if you knew any disability studies articles/books/whatever that center (or even just feature) tic/involuntary movement disorders?

so the answer to this was pretty much no but i spent a bit of time poking around and turned up this 2023 undergraduate honors thesis (link) by a student with tourette’s which seems like a solid starting point for going down the citation rabbit hole!

that piece is “The Embodied Performance of Tics and Tourette Syndrome in the Academic Environment” by Benjamin Allen; i’m only ~1/4th through rn but they argue for a continuum of ticcing + criticize the diagnostic system so i’m comfortable reccing it on that front! the (non-medical) tic-related works cited there are:

Buckser, Andrew. “Before Your Very Eyes: Illness, Agency, and the Management of Tourette Syndrome.” Medical Anthropology Quarterly, vol. 22, no. 2, 2008, pp. 167-192.

Buckser, Andrew. “The Empty Gesture: Tourette Syndrome and the Semantic Dimension of Illness.” Ethnology, vol. 45, no. 4, 2006, pp. 255- 24. https://www.jstor.org/stable/20456601.

Curtis-Wendlandt, Lisa. “Time and the Tic Disorder Triad.” Philosophy, Psychiatry, & Psychology, vol 27, no. 2, 2020, pp. 183-199.

Curtis-Wendlandt, Lisa, and Jack Reynolds. “Why Tourette syndrome research needs philosophical phenomenology.” Phenomenology and the Cognitive Sciences, vol. 20, no. 4, 2021, pp. 573-600.

Miller, James. “The Voice in Tourette Syndrome.” New Literary History, vol. 32 no. 3, 2001, pp. 519-536. Project MUSE, doi:10.1353/nlh.2001.0039.

Trubody, Ben. “Ticced off: An Interpretative Phenomenological Analysis of The Experience of Tourette’s Syndrome.” Journal of the Society for Existential Analysis, vol. 25, no. 2, 2014.

i also searched a handful of disability studies journals for a variety of keywords (movement disorder, tic, tourette’s, involuntary movement, chorea, huntington’s) but didn’t turn up much unfortunately, so all but the first of this next list include someone with tics and/or involuntary movements rather than being about moving involuntarily.

haven’t read these so i can’t speak to the politics / quality (although i’ll make a post if i’m able to read more) but here’s what seemed potentially relevant! also if anything is paywalled please don’t give T&F your money lol, try SciHub or if you can’t find something i can ask around for somebody with institutional access!

Cultural Differences in Reactions to Tics and Tic Severity (2021)

Using virtual reality to implement disability studies’ advocacy principles: uncovering the perspectives of people with disability (2023)

I had every right to be there: discriminatory acts towards young people with disabilities on public transport (2020)

From comedy targets to comedy-makers: disability and comedy in live performance (2015)

From the Case Files: Reconstructing a history of involuntary sterilisation (2010)

i also want to mention “Movements of the Uncontrollable Body Part Two” by Bronwyn Valentine (2019), a creative writing piece about her experiences of embodiment + ableism with spina bifida that i first read pretty soon after it was published & went looking for after developing my movement disorder a year ago because it was so impactful. @fndportal also has some incredibly vital work.

also if you haven’t already read Rosemarie Garland-Thomson’s Staring: Why We Look, it’s not specifically about involuntary movements but definitely a core text for theorizing any visibilized disability.

i hope some of that is helpful!! if anybody checks any of these out i’d love to hear your thoughts/critiques! all the best to you & i hope these offer some resonance with + understanding of your experiences 💓💓

[mischiefmanifold]

reminder again that anxiety, ocd, autism, adhd, trauma, fnd, pandas/pans, etc., do NOT cause tics

if you have tics you have a tic disorder

if you have at least two motor tics and one vocal tic you have tourette syndrome

also remember that there's a lot of different types of involuntary movements

[steampunk-raven]

had a pretty good doctor appointment today :]

[kunaigirl]

Happy Disability Pride and awareness month! Let's talk about Epilepsy!

Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!

First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.

The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)

Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.

If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.

At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.

As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.

And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.

My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.

Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.

If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.

[sysmedsaresexist]

Since my reply is hidden, I've decided to just make my own post about this and put some accurate info out there.

Covert DID vs Overt DID & Possession vs Non-possession: They don't mean what you think they mean!

Here's a bunch of facts and info in no particular order!

I saw a post about how masking isn't a type of covert DID, and I'm here to tell you that

Masking was the original covert!

Dissociation and the Dissociative Disorders (by Dorahy, Gold & O'Neil, 2nd edition, 2023)

You know the statistic in the DSM about covert/overt systems? It's taken from Kluft, above. And it includes masking.

Covert and overt aren't actually used all that often clinically, but it actually has several meanings, INCLUDING MASKING. Neither has to do with possession or non-possession, but they're unfortunately often incorrectly equated as "possession form = overt" and "non-possession = covert". They can overlap, but this is incorrect!

Possession's biggest use is for a disorder that no longer exists as a separate entry in the DSM 5.

Possession-Trance disorder still exists in the ICD, though, and we'll start there.

Trance disorder

"The trance state is not characterised by the experience of being replaced by an alternate identity."

"Trance Disorder is characterized by recurrent or single and prolonged involuntary marked alteration in an individual’s state of consciousness involving a trance state (without possession)."

"The trance state is not characterized by the experience of being replaced by an alternate identity."

"The identities of the possessing agents typically correspond to figures from the religious traditions in the society."

"In Possession Trance Disorder, the individual’s normal sense of personal identity is experienced as being replaced by an external ‘possessing’ spirit, power, deity or other spiritual entity, which is not the case in Trance Disorder. Possession trance states often include more complex activities (e.g., coherent conversations, characteristic gestures, facial expressions, specific verbalizations) than are typical of trance states, which tend to involve less complex activities (e.g., staring, falling)."

We can already see how this is starting to play out with overt/covert and non-possession/possession form.

Possession trance disorder

"Possession trance disorder is characterised by trance states in which there is a marked alteration in the individual’s state of consciousness and the individual’s customary sense of personal identity is replaced by an external ‘possessing’ identity and in which the individual’s behaviours or movements are experienced as being controlled by the possessing agent."

"Trance episodes are attributed to the influence of an external ‘possessing’ spirit, power, deity or other spiritual entity."

"During possession trance states, the activities performed are often relatively complex (e.g., coherent conversations, characteristic gestures, facial expressions, specific verbalizations that are frequently culturally accepted as belonging to a particular possessing agent)."

"Presumed possessing agents in Possession Trance Disorder are usually spiritual in nature (e.g., spirits of the dead, gods, demons, or other spiritual entities) and are often experienced as making demands or expressing animosity."

"The identities of the possessing agents typically correspond to figures from the religious traditions in the society."

"This is distinguished from Dissociative Identity Disorder and Partial Dissociative Identity Disorder, which are characterized by the experience of two or more distinct, alternate personality states that are not attributed to an external possessing agent. Individuals describing both internally and externally attributed alternate identities should receive a diagnosis of Dissociative Identity Disorder or Partial Dissociative Identity Disorder. In this situation, an additional diagnosis of Possession Trance Disorder should not be assigned."

From Dissociative Identity Disorder, I only want to note one thing:

"Individuals who describe both internal distinct personality states that assume executive control as well as episodes of being controlled by an external possessing identity should receive a diagnosis of Dissociative Identity Disorder rather than Possession Trance Disorder."

So, already, we've learned that possession and non-possession have to do with whether the entities are experienced as internal or external agents.

You'll note that the ICD doesn't mention covert or overt at all.

So back to the DSM-- “possession” was diagnosed as Atypical Dissociative Disorder in the DSM-III or DDNOS in DSM-III-R. In DSM-IV, possession and trance were diagnosed as sub-categories of the Dissociative Trance Disorder (DTD), and in DSM-IV-TR they were merged into one, and recognized as a cultural variant of the Dissociative Disorder Not Otherwise Specified [DDNOS]. In DSM-5, possession-form presentations are linked with criterion A of DID: “Disruption of identity characterized by two or more distinct personality states, which may be described in some cultures as an experience of possession” (p. 292).

Another common myth has to do with amnesia and covert/overt. The facts are:

Covert DID is associated with the highest levels of blackout amnesia. That's how it stays covert. People have amnesia for their own amnesia. It's an incredible phenomenon that's highly documented.

Overt DID typically has the same or less amnesia. It's much harder to explain away noticeable behaviour so people are much more aware of their own gaps in memory and can begin treatment sooner. They're much more easily diagnosed. As internal dialogue and intrusion are far more different in these entities, people become aware sooner and experience more grey out amnesia thanks to this basic awareness.

Covert DID is no longer diagnosed as OSDD 1a. The DSM 5 introduced new reporting criteria that allow the patient and their family to self report switches. OSDD and DDNOS 1a were primarily used for situations where the clinician didn't witness a switch during interviewing. As such, OSDD these days mainly covers P-DID presentations where switching is genuinely rare, if it happens at all. While P-DID is less associated with amnesia, OSDD 1a will require it. P-DID without amnesia will fall into 1b or DID itself, thanks to the DSM's updated amnesia wording.

For this next bit, I'll be using the DSM 5, as that's what I have in front of me, for the purposes of this conversation, this version will do fine.

"Dissociative identity disorder is characterized by a) the presence of two or more distinct personality states or an experience of possession."

"The fragmentation of identity may vary with culture (e.g., possession-form presentations) and circumstance. Thus, individuals may experience discontinuities in identity and memory that may not be immediately evident to others or are obscured by attempts to hide dysfunction."

You know, overt/covert, and wow, it doesn't just have to do with the entities, BUT HOW YOU DESCRIBE YOUR DISORDER?!

You mean... like masking?

Holy shit, yeah, the DSM just said that.

These terms are not as interchangeable as some people think they are. They have very unique meanings and are very different concepts, not only from each other, but from how they're often used within the community.

To reiterate:

Possession form = external entities

Non-possession = internal entities

Overt = noticeable behaviour and mannerisms

Covert = hidden or sneaky behaviour or mannerisms

These can and do overlap, but exist as separate concepts.

More from the DSM:

"The defining feature of dissociative identity disorder is the presence of two or more distinct personality states or an experience of possession (Criterion A). The overtness or covertness of these personality states, however, varies as a function of psychological motivation, current level of stress, culture, internal conflicts and dynamics, and emotional resilience."

Oh, wow, it changes over time and can vary between alters themselves?! Wow.

"Sustained periods of identity disruption may occur when psychosocial pressures are severe and/or prolonged. In many possession-form cases of dissociative identity disorder, and in a small proportion of non-possession-form cases, manifestations of alternate identities are highly overt. Most individuals with non-possession-form dissociative identity disorder do not overtly display their discontinuity of identity for long periods of time; only a small minority present to clinical attention with observable alternation of identities."

"Possession-form identities in dissociative identity disorder typically manifest as behaviors that appear as if a “spirit,” supernatural being, or outside person has taken control, such that the individual begins speaking or acting in a distinctly different manner. For example, an individual’s behavior may give the appearance that her identity has been replaced by the “ghost” of a girl who committed suicide in the same community years before, speaking and acting as though she were still alive. Or an individual may be “taken over” by a demon or deity, resulting in profound impairment, and demanding that the individual or a relative be punished for a past act, followed by more subtle periods of identity alteration."

So, yes, according to the DSM, purposefully masking is a covert presentation, and it has nothing to do with possession or non-possession form. The way a system "naturally" presents will change many times over the course of their disorder.

IN FACT, if we want to get technical, covert actually refers specifically to heavy fragmentation in most clinical texts. Fragments are typically experienced internally and as intrusion, rather than switches. Here's a source.

Covert DID is a less dramatic and more subtle form of the disorder. In this variant, individuals with DID do not display overt switches or distinct personalities. Instead, they experience a fragmentation of their identity, leading to a lack of continuity in their sense of self and memory. These individuals may not even be aware of their condition and might attribute their memory lapses and identity shifts to stress, forgetfulness, or other factors.

Covert DID can be challenging to diagnose because the symptoms are less obvious. It often goes unrecognized for years, and individuals may suffer in silence without understanding the source of their difficulties. Therapy and expert evaluation are essential for identifying and addressing covert DID.

And another.

In addition, diagnostic challenges can result from identity alteration or personality switching not as obvious as expected. In fact, many patients have “covert DID” or “OSDD,” which is characterized by partial dissociation (e.g., dissociative intrusions) rather than full dissociation (i.e., switching plus amnesia).

In the end, though, these terms aren't used all that often, and various uses will still be understood in a clinical setting. Doctors can't even agree on definitions, so use them however you want.

It's not that big of a deal.

I hope this post was useful, even if it was a bit disjointed.

[wheelie-sick]

Nervous System Effects of Systemic Lupus Erythematosus

AKA I spent hours suffering trying to find all this information and I want you to not have to do that!

Cerebrovascular

1. Stroke

"...studies have shown that stroke occurs more frequently in people with SLE than in the general population, with ischemic stroke developing in up to 20% of lupus patients..." link

2. Cerebral Small Vessel Disease

"CSVD is an umbrella term for a variety of conditions resulting from damage to small blood vessels in the brain. In most cases, CSVD is caused by the narrowing or obstruction of small blood vessels in the brain due to inflammation and/or a buildup of misfolded proteins called plaques. This chronic damage can starve brain cells of oxygen and cause internal bleeding, which in turn can damage other nearby brain cells." link

Diagnosed via a brain MRI to look for bleeding of the small blood vessels, damage to white matter, and small strokes - link

Occasionally is confused for Multiple Sclerosis - link

"Quantified MRI brain studies of individuals with lupus show significantly accelerated cerebral SVD, suggesting that this is the most frequently observed radiological–pathological brain abnormality in lupus...." link

CSVD is a large cause of dementia in the general population but the significance of these findings in SLE patients is unknown - link

Central Nervous System

1. Transverse Myelitis

"Transverse myelitis is a neurological condition that happens when both sides of the same section of the spinal cord become inflamed. This inflammation can damage myelin, the fatty substance that covers your nerves. Loss of myelin often leads to spinal cord scarring that blocks nerve impulses and results in physical problems." link

Symptoms can develop quickly or over the span of several weeks. Symptoms include back pain, neck pain, paresthesia, loss of bowel and/or bladder control, and heightened sensitivity to touch - link

Diagnosed via CT, MRI, or myelography - link

Differential diagnosis of comorbid Neuromyelitis Optica Spectrum Disorder - link

Transverse myelitis occurs in approximately 1% of lupus patients - link

2. Autoimmune Aseptic Meningitis

"...an inflammatory condition affecting the meninges, the protective membranes surrounding the brain and spinal cord..." - link

"Given that many individuals with lupus are immunosuppressed, a critical differential diagnosis is one of infectious meningitis caused by typical or opportunistic pathogens." - link

May cause nausea, fever, and neck stiffness among other symptoms - link

Diagnosed with a lumbar puncture and/or CT in part to rule out other causes of symptoms - link

3. Chorea

Chorea is a movement disorder causing involuntary, irregular, and unpredictable muscle movements. It affects arms, legs, and facial muscles - link

4. Parkinsonism

Causes slowed movements, tremor, and stiffness - link

Not the same as Parkinson's Disease!

A rare effect of lupus - link

Diagnosed based on brain MRI, single-photon emission computed tomography (SPECT), and response to treatment - link

5. Myoclonus

"Myoclonus is an uncontrollable muscle movement that’s sudden and brief. " link

6. Demyelinating Syndrome

"An association between lupus and MS-like brain changes have been suggested, and sometimes termed “lupoid sclerosis”" link

3.7% of patients have a demyelinating syndrome (though not all have primary SLE demyelination) - link

Demyelinating syndrome may cause vision loss, muscle weakness, muscle stiffness and spasms, loss of coordination, change in sensation, walking problems, and changes in bladder and bowel function - link

7. Lupus headache

"Headache is a highly prevalent disorder in people with SLE, but there is no convincing evidence that this incidence is higher than that seen in the general population. Thus the entity of “lupus headache” is controversial." link

One of the main characteristics of lupus headaches is that they are not remedied by pain medication. lupus headaches require treatment with steroids or immunosuppressants to resolve -- "severe, persistent headache; may be migrainous, but must be nonresponsive to narcotic analgesia" link

8. Posterior reversible encephalopathy syndrome (PRES)

"Posterior reversible encephalopathy syndrome (PRES) is a neurologic disorder in which a person presents with visual disturbance, seizure, headaches, and altered mentation" - source

"Posterior reversible encephalopathy syndrome (PRES) has been increasingly identified in patients with systemic lupus erythematosus (SLE)" - source

8. Seizures

"prevalence of explicit episodes of seizures among SLE patients, varies from 2 to 8%." - link

"SLE patients with recurrent seizures usually have abnormal findings on EEG, consistent with focal aware events, epilepsy with impaired awareness and focal to bilateral tonic-clonic epilepsy, as demonstrated by Appenzeller and colleagues who found that 9.7 % of patients with single epileptic seizure had abnormal EEG findings, compared to 100 % abnormal EEG findings, commonly on temporal lobe, in patients with recurrent seizures" - link

Peripheral Nervous System

1. Cranial Nerve Disorder

"Cranial nerve disorder refers to an impairment of one of the twelve cranial nerves that emerge from the underside of the brain, pass through openings in the skull, and lead to parts of the head, neck, and trunk. These disorders can cause pain, tingling, numbness, weakness, or paralysis of the face including the eyes." - source

"Cranial nerve involvement is also relatively uncommon and usually transient, occurring in 10% of patients with SLE." - source

2. Peripheral Neuropathy

"Peripheral neuropathy happens when the nerves that are located outside of the brain and spinal cord (peripheral nerves) are damaged. This condition often causes weakness, numbness and pain, usually in the hands and feet. It also can affect other areas and body functions including digestion and urination." - source

"Peripheral neuropathy occurs in as many as 18% of patients with SLE" - source

Ocular

1. Optic Neuritis

"The optic nerve itself can sometimes be inflamed in lupus, or it can be affected when the blood vessels supplying the nerve are themselves inflamed (that is, ischemic optic neuropathy). This can lead to a change in vision, or even vision loss." - source

"Optic neuritis is an uncommon neurologic manifestation of systemic lupus erythematosus (SLE) and can be seen in about 1% of lupus patients" - source

"Optic neuritis usually affects one eye. Symptoms might include: Pain, vision loss in one eye, visual field loss, loss of color vision, and flashing lights." - source

Autonomic Nervous System

1. Autonomic Neuropathy

"Autonomic neuropathy occurs when there is damage to the nerves that control automatic body functions. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function." - source

"Autonomic nervous system dysfunction is highly prevalent in SLE patients (up to 54%)" - source

Psychiatric

1. Lupus psychosis

" Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations." - link

Psychosis is one of the diagnostic criteria for systemic lupus erythematosus

"Differentiation of steroid-induced psychosis from lupus-associated psychosis is particularly challenging" - link

[whumpinggrounds]

Writing Seizures

 Latest installment in Disability Writing Guides! As always, feel free to add something, or come into my ask box with a question, comment, or request. 

This post is intended as a writing resource, not medical advice or a comprehensive exploration of seizures or seizure disorders.

Vocab

A seizure is a brief change in normal brain activity. Sometimes this is visible and sometimes not. They can last variable lengths of time and occur with varying frequency depending on the cause. They can be caused by epilepsy, trauma, illness, drug use, or any number of other factors.

Epilepsy is a general term for brain disorder characterized by frequent seizures. A person can have seizures without having epilepsy. Epilepsy is not a distinct diagnosis; there are many different types.

Epilepsy is diagnosed after a patient either has two seizures, or one seizure and an EEG that shows the potential for future seizures.

Again: If a person seizes more than once, they are medically defined as epileptic. A person can be diagnosed as epileptic after only having one seizure if their EEG shows potential for more.

Rescue meds are medications given to stop a seizure currently in progress.

Antiseizure drugs or ASDs, also known as anticonvulsants or antiepileptics, are drugs taken daily to prevent seizures from occurring. These are different from rescue meds.

Status epilepticus is a seizure that lasts longer than five minutes or having a seizure and then seizing again within five minutes without regaining full consciousness. Status epilepticus is extremely dangerous and can cause brain injury or death. Someone experiencing status epilepticus needs immediate medical attention. 

Generally speaking, serious intervention would begin before the seizure reached its fifth minute. If someone is seizing past four minutes with no sign of stopping, the people timing the seizure should not wait until five minutes to call 911, administer rescue meds, etc.

A seizure cluster is when a person experiences two or more seizures within a 24 hour period.

A nonepileptic event is an event that may look like a seizure but is produced by a different condition. Examples include ticcing due to Tourette’s or a heart arrhythmia causing a person to pass out suddenly.

Tonic refers to the muscles in the body becoming stiff.

Atonic means the muscles in the body relaxing.

Clonic refers to periods of shaking or jerking in parts of the body.

Myoclonic also refers to short jerking in parts of the body, but is generally more localized/occurring in a smaller area of the body.

Types of Seizures

I’m not going to go through every type of seizure, but I will go over some basics. This is massively simplified, and intended as a general writing resource, not technical or medical knowledge. Feel free to correct if I’m saying something wrong, or add detail.

Seizures are first divided into two overarching groups. Generalized seizures mean that excessive or unusual electric signals are being discharged across the entire brain. Focal or partial seizures mean that excessive or unusual electric signals are being discharged in one specific part of the brain.

Tonic-clonic seizures are the kind most commonly portrayed in media. They involve a total loss of consciousness and involuntary muscle contractions and shaking or jerking in parts of the body. This type of seizure may begin as a focal seizure or a myoclonic seizure (more on this later), but a tonic-clonic seizure is always generalized. Also - this type of seizure was formerly known as grand mal, but this is an outdated term and no longer used.

Myoclonic seizures are partial seizures, characterized by the sudden, involuntary twitching of a muscle or group of muscles. People retain consciousness during these seizures, but do not have control over their body or movements.

Atonic seizures, also called drop seizures or akinetic seizures, cause the sudden loss of muscle strength. They’re called drop seizures as they often (but not always!) cause a person to drop to the ground. A person experiencing an atonic seizure generally remains conscious.

Focal, partial, or absence seizures are seizures that do not involve the whole brain. They can involve repetitive movement like muscle jerking, but more often are characterized by being “frozen,” feeling “out of it,” or “staring into space.” It may be difficult for observers to tell that someone is seizing. This type of seizure was formerly known as petit mal, but this an outdated term and is no longer used.

Focal onset aware seizures, formerly known as “simple partial seizures,” occur when someone has a partial seizure and retains consciousness and awareness. Someone can look unaware and still be aware when experiencing this type of seizure. This type of seizure may involve feeling “frozen” or repeated small muscle movements.

Focal onset impaired awareness seizures, formerly known as “complex partial seizures,” occur when someone has a partial seizure and loses consciousness or awareness. This is type of seizure may involve feeling “out of it,” “staring into space,” or a loss of memory.

In describing a seizure (in modern-day America), the convention followed is seizure type, awareness level, and sometimes, where a seizure begins if it is a partial seizure. Thus, you get diagnoses like “Focal onset impaired awareness seizures arising from the temporal lobe,” “Focal onset atonic aware seizures arising in the frontal lobe,” or “General onset tonic-clonic seizures.”

These diagnoses are very wordy, and are sometimes shortened. Drop seizures or absence seizures are typically used as more casual terms. Also, as seizures generally begin in one of the four lobes of the brain, epilepsy is sometimes described by which lobe the seizures arise in (temporal lobe epilepsy, occipital lobe epilepsy, etc.)

Process of a Seizure

An aura is a feeling, sensation, or “warning” experienced by a person who is about to seize. Auras tend to present the same way over and over. Someone may not have auras, or recognize an aura as being a prelude to a seizure. Sometimes, an aura occurs and a seizure does not follow. Basically, there are no real rules with auras, but they are pretty common, and are generally not observable except to the person experiencing them.

Fun fact: people who have migraines also tend to have auras! It is believed that Lewis Carrol wrote Alice in Wonderland while experiencing a pre-migraine aura.

The ictal period refers to the experience of an actual seizure, when electrical activity in the brain is at its most intense. What a seizure itself looks or feels like depends on the type of seizures a person experiences, and y’all should conduct research into that for your characters.

Some people need rescue meds administered every time they seize. Others are only supposed to be given if they seize for a certain amount of time (longer than two minutes, for instance). Meds can be administered as nasal sprays, rectally, or tucked under the tongue or into the cheek. Rescue medications are only injected in hospital settings.

Remember that regardless of how often a character seizes or how long they’ve had epilepsy, seizing for more than five minutes, or multiple times within five minutes without regaining consciousness, is a medical emergency. Rescue meds should be administered and whatever medical intervention is appropriate for your setting should be immediately undertaken.

The post-ictal stage occurs after a seizure ends and lasts anywhere from five to thirty minutes. This is the period when a person is still experiencing after affects from their seizure, like confusion, drowsiness, hypertension, headaches, or nausea. Not everyone experiences post-ictal symptoms, and a person may continue to feel exhausted, irritated, or “out of it” more than thirty minutes after they seize.

Seizure Etiquette

Seizures can be surprising and very noticeable. A person that is seizing still deserves privacy. In your story, they should be given privacy, and good friends/teammates/co-characters could steer other people away or block them from being a public spectacle while they seize.

Do not have anyone put anything in a seizing character’s mouth. Ever. This is not necessary and can be dangerous, as a person can choke, or the person attempting to put something in their mouth could get accidentally bitten.

Do not restrain a person that is seizing. The character seizing or the character attempting to restrain them could get hurt, and the restraints are not going to be helpful whatsoever. Characters can move chairs or place cushions to keep a seizing character from hitting them; do not attempt to stop the seizing character’s body from moving how it will.

If necessary, the person seizing can be placed on their side, otherwise, do not attempt to move them.

If a non-epileptic character seizes, it is an emergency. Epilepsy can arise spontaneously at any age, but seizing with no prior history of seizures is a big deal, and the causes for a seizure need to be checked out to understand what caused it.

If your characters have access to medical knowledge and medical treatment, it would be realistic to have them time the seizure so that they know if a character needs rescue meds or has entered status epilepticus.

Rescue meds can be very, very expensive. A character will likely not receive rescue medication every time they seize, especially if their condition is largely stable.

It can be scary and emotional to watch someone seize. Feelings of fear and helplessness are common, especially if what’s needed is for characters to stand and wait to see if the seizing individual needs further help. It’s okay for your characters to feel that and react to that.

Things to Know

Epilepsy mostly presents in childhood and in people older than 60, but can arise at any age. Repeated seizures caused by an underlying condition (brain injury, tumors, strokes) are still considered epileptic seizures, and the person that has them, epileptic.

Repeating it once more: If your character seizes more than once, they are medically defined as epileptic.

The vast majority of seizures do not cause brain damage, or any other kind of damage. They can be frightening, distracting, inconvenient, upsetting, confusing - any number of things. But the vast majority do not cause physical harm, besides the bruises or scrapes that may come from muscle contraction or losing awareness.

Some seizures do cause brain damage. If you’re writing this scenario, please do some research into the type of seizure that would cause brain damage and what kind of brain damage that would be. Do not, for instance, have your character experience a tonic-clonic seizure and then come back in a wheelchair with no further explanation.

Sometimes, the muscle contractions of a seizure can cause spit or foam to collect around someone’s mouth. Sometimes, people bite their tongue, and this foam or spit can appear bloody. No internal injuries occur as a result of a seizure. Any bloody foam or spit is a result of a bitten tongue or cheek, and nothing more.

People who are seizing sometimes lose bowel or bladder control. This is not something they have any control over, but can still be embarrassing and is sometimes a reality of living with seizures.

In the United States, driving laws vary from state to state, but generally a person needs to be seizure free for a period of months (usually 3-6) before they are allowed to drive. The restrictions on driving commercially are much stricter.

Someone diagnosed in childhood may grow out of their epilepsy. Some estimates put the number of kids that will outgrow their epilepsy above 50%. If someone is seizure free for 2-5 years, they may begin to lessen their ASD dose, and may continue until they are no longer medicated at all.

Someone diagnosed in old age will not typically have a spontaneous remission of seizures.

Epilepsy can have a genetic basis or it can arise spontaneously. The fact that it can be passed from parent to child has been the basis of discrimination for a very long time. Be aware of this.

For much of human history, having epilepsy has been hugely stigmatized, and people with epilepsy have been routinely persecuted, particularly in the Western world under the banner of eugenics. As recently as the 1970s, many states were still forcibly sterilizing epileptic people. In writing a character with epilepsy, be aware that the diagnosis carries a heavy weight of stigma and painful history.

Though epilepsy and people who have epilepsy have long been stigmatized and persecuted, it has also long been regarded as a mystical illness, closely tied to spirituality and religion. In many places, people who have seizures are considered to be in religious ecstasy, having visions, or are chosen by higher powers. Consider the setting in which your story takes place and if this kind of thinking would realistically occur. Keep in mind that this view of epilepsy and seizures is not necessarily a positive thing.

Accessibility and Treatment

If you are writing a character who only seizes once (and the setting allows for it), proper treatment would consist of visiting whatever medical establishment exists in your universe, and monitoring or testing to determine the cause of a seizure and if another is likely to occur.

Even though your character is not going to seize again and does not have epilepsy, consider how the single seizure may affect your character. What did it mean to them to (perhaps publicly) lose control of their body or brain?

If your character does have epilepsy, their life will change or has always  looked different because of that epilepsy. For example, someone with epilepsy may not be allowed to drive, or may have never learned to drive. It is not safe for someone who has uncontrolled epilepsy to live alone. How would these considerations affect your character’s life and independence?

Think about how having seizures would apply to your character and your setting. Do they feel safe swimming? Spending significant time alone? Are there places that they avoid because it’s too dangerous to seize there?

In real life, people who experience tonic-clonic or atonic seizures often take precautions to ensure their safety should they have a seizure. People who have atonic seizures wear padded helmets to protect their heads. People who experience an aura may get themselves to a safe location, or adjust their surroundings so that they won’t hurt themselves while they seize. What precautions might your characters take to protect themselves?

Seizure triggers. Photosensitivity is a very common one, with flashing lights being especially dangerous for epileptic people. Some seizures have clear, specific triggers, while others seem to arise out of nowhere. Though it may be difficult to tell what exactly triggered a seizure, the modern Western medical establishment believes that all seizures have triggers, though the triggers may not be known. Triggers tend to be environmental cues that the central nervous system over-responds to, like the aforementioned flashing lights. A friend of mine has epilepsy that is triggered by anything coming directly at their face, like balls being thrown towards them. Once, a seizure was triggered by a butterfly flying directly at them.

Seizures can also be triggered by sounds, smells, or sensation, not just sight!

What might your character’s seizure triggers be? Your character may or may not know themselves, but if the triggers are known, how does your character avoid them, or plan their life around them? My friend’s seizure trigger meant that they couldn’t play ball sports, even casually, which kind of sucked. But having a seizure sucked more, so.

In terms of accessible spaces: The more open space, the better, and the softer the surfaces, the better. For instance, people who have seizures may prefer using an accessible bathroom stall, as they are larger, and the person seizing is less likely to become trapped or hurt themselves if they seize unexpectedly in the bathroom. What kinds of spaces does your character seek out, particularly if they are aware they might seize soon?

A properly medicated epileptic character may still have seizures. Medications are intended to control, shorten, and decrease total number of seizures. Sometimes they entirely eliminate seizures, but a person may still seize and that does not mean the medication isn’t working. A character who still seizes frequently and for long stretches of time likely is not properly medicated. Medications should be taken around the same time(s) every day for maximum efficacy.

Life changes, particularly puberty, can make medication less effective.

Proper medication is life-changing for people with epilepsy, and would likely be life-changing for your epileptic character as well. What does the process of getting medicated look like? How does your character feel upon being properly medicated? What in their life changes, and what stays the same?

Are there any drawbacks to being medicated? Side effects? Cost of medication?

If epilepsy is drug resistant, there are a few other options. I’m only going to discuss two, one because it has a long, fraught, and misunderstood history, and the other because it’s Trendy.

Brain surgery is an option for people/character with epilepsy. This is not the scary ice pick lobotomy of the 20th century. Brain surgery is a necessary tool to help epileptic people that are struggling with frequent, severe seizures that do not respond to medication, or when the side effects of medication are intolerable. Surgery can mean removing part of the brain (resecting), killing specific nerve cells where seizures start (lesioning), disconnecting the hemispheres of the brain (corpus callosotomy), or the implantation of a pacemaker-type device that uses electrical signals to block or disrupt seizures.

If your character is getting brain surgery for epilepsy in a contemporary, futuristic, or fantasy setting, please do your own research and ensure that the type of surgery they’re receiving fits their type of epilepsy and their need. Please frame the surgery accurately and avoid falling back on scary tropes about people coming back with different personalities, no personality, or dying in these procedures.

The last treatment option I’m going to discuss here is the ketogenic or keto diet. You may not be aware, but the diet was originally developed to treat children with epilepsy, and there is limited evidence showing that it does decrease or eliminate seizures in children. This diet is extremely high in fat and as low as possible in carbs. The majority of people who believe they are following a keto diet and are in ketosis (body and brain fueled by fat instead of sugar) are wrong. It is extremely difficult to follow a strict keto diet and is absolutely a major life change.

The diet would typically only be recommended for children between 2 and 12 whose epilepsy is resistant to medication.

Why or how the keto diet works to control epilepsy is not well understood. The fact that the brain is fueled by fat products known as ketones, rather than glucose, is thought to be related. If anyone knows more, feel free to contribute that knowledge.

Rethink

If your character gets brain surgery for their epilepsy, and that surgery is framed as negative, think about why that is. I absolutely understand the long, problematic, real-life history behind lobotomies, and I am not telling you not to explore that. Please do think hard about what beliefs you may have, and what messages you may be sending, about people who get brain surgery.

Characters with epilepsy that gives them visions or confers some kind of power. Yes, there are historical associations between epilepsy and religiosity, but remember the real world people who have epilepsy and how this framing may strike them. This is a common trope, so do a little introspection on what about this narrative is compelling to you and what messages you’re consuming and endorsing.

Seizures that occur to add intensity, drama, fear, or risk to the story. What are your characters afraid of? Why are they afraid of it? As always - what messages are you sending about seizures or the people who experience them? How would it feel to read your portrayal as a person who regularly seizes?

A character who seizes but does not have epilepsy. Related to the above - why is a seizure important to your story, but epilepsy is not a part of it?

A character who seizes twice but is not described as/does not identify with epilepsy. For one, this is medically inaccurate, which you should just be aware of. Secondly - what about this diagnosis is undesirable or unnecessary for your story? Why?

Write what you’re going to write, but understand why you’re writing it, and how it might be perceived. In particular, when writing about a complex, widely misunderstood, and stigmatized condition like epilepsy, understand what stigma you may be contributing to, what inaccuracies you may be presenting, and what complexities you may be ignoring, especially by having a character seize without being epileptic.

Resources

A lot of this is written based on my relationships with epileptic people and personal research. I don’t like to recommend media that I haven’t personally read/watched, just because then I don’t know what I’m recommending, but if anyone else has recommendations, please feel free to add them!

How Evan Broke His Head and Other Secrets by Garth Stein is contemporary novel about a Seattle man with epilepsy who is suddenly thrust into parenting a 14-year-old son he didn’t know existed. I read it a while ago and remember it being pretty good, but nothing special (no offense, Garth Stein). Worth noting that while the author is not himself epileptic, his sister does have epilepsy and he likely has better than typical knowledge of the condition.

The Spirit Catches You and You Fall Down by Anne Fadiman is a creative nonfiction book about a Hmong family, their epileptic child, and the medical saga they embark on as the American medical establishment attempts to treat their child. It is written about a real-life immigrant family and their daughter and was extensively researched over eight years, focusing on cultural differences, and xenophobia, racism, and misunderstanding in medicine.

This Podcast Will Kill You, which is free on Spotify, includes an hour and forty minute long episode diving into (some) of the etiology and history of epilepsy.

Maintenance Phase is a podcast that is also free on Spotify and has an episode about the keto diet. The main focus of the episode is the keto diet as it is used for weight loss, but it does include some fascinating backstory on the (invented) narrative that the keto diet is a secret that is being kept from the general public.

Please hit me up with questions, comments, corrections, or requests. Happy writing!

[angstydevil]

The map is not the territory. In regards to geopolitics, this means a map of the world is a representation, not reality itself. Borders change. Landmasses change. The words used to label depictions of certain regions reflect temporal motivations. The landmasses labeled North America and South America are named after an Italian mapmaker and have not been named as such for many millennia. The names on the globe reflect historical ideological movements.

The concept of a world map entirely covered in nationstates with well-defined borders is relatively new. This reflects a particular ideology in which states are things that occupy landmasses and contain people, rather than material realities constructed by social agreements between individuals.

Even satellite maps are photographs: they are representations of reality, and they are distinct from the real world in various ways. If satellite maps are presented as the most cutting edge and accurate way of depicting Earth as it really is, that too reflects a bias toward seeing what the world “really is” in a particular way.

The map is not the territory. In regards to psychiatry, this means that a catalogue of behaviours maligned as syndromes written by clubs of predominantly white western cisgender men is not a holy almanac of extant neurological deviations from some universal standard of reason.

Psychiatry is a violent institution at its roots. The concepts of sanity and madness are inextricable from racism and colonialism. American psychiatry emerged from the practice of allowing slaveholders the “right” to have captive people they held in involuntary servitude declared “mentally unfit” or “insane”.

Psychiatry remains a violent institution. It is an extension of western fetishization of “rationalism”; it rationalizes unpersoning. It holds that madpeople are without “reason”, a notion that for many intents and purposes is a sanitized synonym of soul, and therefore madpeople must be caged. It offers a “scientific” and “rational” dogma of “degeneracy”.

Psychiatry is interlinked with the prison industrial complex and is one of the principal institutions to which the term “institutional racism” applies. American psychiatry diagnoses black bodied people with oppositional defiant disorder, antisocial personality disorder, schizophrenia, and cognitive disabilities at higher rates than white bodied people, simultaneously villainizing and constructing blackness as a social and material reality, villainizing and constructing particular categories of disability as categories to be marginalized and medically neglected, and perpetuating racialist ideologies while frequently aligning with eugenicist initiatives. Psychiatry is a part of a system that determines who is free and who is unfree, and that system serves and protects inequalities as its foundational purpose.

Psychiatry creates an idea of mental illness that's very attractive as a pejorative among liberals and conservatives, e.g., Conservativism/liberalism should be considered a mental illness (and therefore conservatives/liberals should be unfree). This kind of thinking also appears on the auth-left, e.g., I think money should be considered a delusion (and therefore capitalists should be unfree). Psychiatry constructs, enforces, and regulates categories of “undesirables”.

No one derives rights and validity from the DSM. American queer people did not feel protected by homosexuality's status as a diagnosis in the DSM, and they rioted and organized until it was removed as a diagnosis in 1974. Trans people deserve freedom and rights because everyone deserves freedom and rights, not because the American Psychiatric Association recognizes gender dysphoria as a diagnosis.

Psychiatry does not champion the rights of people it diagnoses. In the words of Frantz Fanon, “Psychiatry is an auxiliary of the police.” Psychiatrists police communities, and they do so with the same violent racist, sexist, cisheteronormative prejudices endogenous to police departments.

Psychiatrists, like police officers, have the right to arbitrarily detain people. Psychiatrists are gatekeepers between people and inalienable rights to medicine and drugs. Psychiatrists participate in the othering and erasure of people who experience trauma, especially generational and societal trauma. Psychiatrists actively construct a colonial narrative in which there exists an ideal (white, sane, able bodied) rational human standard from which there is (“degenerate”) deviation. Psychiatrists kidnap and imprison people. Psychiatrists swear oaths to kidnap and imprison people. Psychiatrists rarely face charges or even lose their licenses to practice when their abuses are well documented - and, in general, most abuses are not well documented.

Psychiatry’s existence as an institution opposes absolute rights to bodily autonomy. Psychiatry prohibits poor, sick, and disabled people people from accessing lifesaving medicine. Psychiatry disproportionately denies people of color access to treatments entirely by applying “untreatable” diagnoses.

Medicalist gatekeepers are bullies shilling for a cruel establishment. They routinely accuse their harassment targets of faking disorders, being delusional, and having personality disorders, and they routinely invalidate people using a variety of slurs originally directed at people diagnosed with psychosis, autism, cognitive impairment, and paraphilias as pejoratives.

All these pejoratives are associated with diagnoses in the DSM. Medicalist gatekeepers use them to invalidate and harass others because they’ve integrated the beliefs that psychiatric propagandists peddle: that belonging to those diagnostic criteria makes you ontologically worth less and less “rational” than a sane, abled being; deserving of unfreedom; “degenerate”—without “reason”.

At the crux of their arguments, they say, you’re not like me, you’re like those bad madpeople – or, even more insidiously, I don’t believe what you say about yourself as much as I believe what psychiatry says about you.

If you find yourself thinking, “well of course we have to have an objective viewpoint to really understand this phenomenon - people like that aren’t fully rational!” then you believe unpersoning propaganda.

[crippleprophet]

in need of involuntary movement advice

hi besties, so i have lupus that is currently untreated and have been developing a lot of neurological issues, most likely as a consequence of this. we are suspecting:

1) cerebellar ataxia because i list to the left, i have an intention tremor, my balance has gone to hell standing & walking and is worse with my eyes closed, and i’ve got dysmetria (issues with finger-to-nose test)

2) some sort of movement disorder(s) affecting the basal ganglia. i experience what seems to be dystonia (slow twisting movements & muscles being held still in a certain position), chorea (jerky sudden movements), and ballismus (large flinging movements). the involuntary movements seem to get worse with directed movements, especially fine motor skills (possibly in some sort of relationship with the intention tremor), and strong emotions such as distress or excitement.

these have been getting significantly worse recently, and i’m especially concerned because my involuntary movements have “spread” to involve my legs and throat/tongue. i’m really struggling to find any practical advice & not just bullshit about exercise & taking care of your mental health or how brave caregivers are. my questions are including but not limited to:

if i’m walking while my legs start flinging, what do i do? i’ve started using my upright rollator around the house but i don’t think it could keep me from falling in that scenario

harm reduction in cooking for myself? i already don’t use knives but i’m worried about spilling boiling water or injuring myself with scissors

how to not break dishes. i need to use ceramic & glass because they can more reliably be cleaned for my allergy needs. someone suggested several small tables between the kitchen and couch which i’m going to try but would love any additional ideas as well

eating. i already use adaptive silverware and i think i’m going to invest in some bibs but it’s still so difficult

advice for choking - how to minimize it, what to do during it, etc

do you just take a pillow with you all the time or…? like i start hitting things around me really hard

we’re trying to find a community member who would be willing to drive me to appointments but in the event that i have to take a lyft somewhere, what do i tell the driver in case i start whacking their car?

if i for some reason have to be out alone, advice for not getting murdered by the police and/or forcibly hospitalized?

thank you so much to anyone who has advice, including any resources on where to look up this type of information!! i would really appreciate any reblogs for visibility

[mischiefmanifold]

screaming into the void that tardive dyskinesia is not a tic disorder

[j0kers-light]

Hi, Chaos! I have a request - How would J react with Y/N having a condition called 'winking eye syndrome'? It's actually something I have but it's such a rare condition that it's never mentioned. I would love to read your take on it. Thanks in advance! <3

Hello and hi beloved!!! 🖤✨

Fun fact! Anytime I have an ask that’s medical in nature, I run to my mother to get the most accurate information. She loves helping out to answer these so much!

Moving along! Winking eye syndrome? Coming right up! 👩🏽‍💻 I’m sorry I’m answering this ask so late, writers block is powerful. I hope you enjoy beautiful 😘

Definition: Marcus Gunn Jaw winking syndrome (MGJWS) is one of the congenital cranial dysinnervation disorders (CCDD) and these individuals have variable degrees of blepharoptosis in the resting, primary position. It is associated with synkinetic movements of the upper eyelid during masticating movements of the jaw.

credit & credit

MGJ, another rare condition (with hardly any studies/articles) that affects the eyelids literally by 'winking' at inopportune moments.

(From my research) its more of an insecurity or an annoyance than anything since its not life threatening or harmful, (if it exceeds 2mm then it could be).

However the mental health side effects—being self conscious, is serious enough to discuss.

Joker is very perceptive, and especially about his Bunny, so he would definitely notice but not comment.

He takes notice how you don't eat or drink in front of him to avoid him seeing your condition.

You are very particular about how you angle your face or talk in order to not upset your jaw and cause any flare ups even though sometimes the wink can be involuntary.

Joker doesn't like you hiding from him and makes it his mission to help you become more comfortable with yourself.

You might get a cheeky joke every now and then like, "Are ya getting sleepy Bunny?" or “Happy to see me doll?" as he winks right back at you.

Don't panic, Joker is never insulting or mean to you! Its all done in jest.

He does enjoy seeing you fluster and try to shy away but he's quick to spin you around to face him.

You pout and close your eyes, that won't work. Joker is patient and he'll wait however long it takes for you to look at him. Its high time he addressed this.

"Mind tellin' me whyy your hiding those... gorgeous eyes from me sweetheart?"

His alluring voice makes the words pierce your heart even harder yet your lingering insecurities make you hesitate. "They're not gorgeous, J. I hate them."

You bury your face into Joker's chest. He's just saying that because he's your partner. You hate your eyelids for always being stupid and not working properly. It makes taking photos a daunting task. Eye contact is your worst nightmare and it overall makes you ugly.

"You are noT ugly, Y/n."

Wait, did you say that part out loud? Joker tipped your chin up so he could see you more clearly. The deep frown on his face means he's dead serious and you silently begin to panic.

"You think I would liee when I call ya my pretty girl. My Goddess? Mm? Am I a li-ar Y/n?"

His eyes scan your face and force you to mumble a quick, "N-No.."

Joker leaned down to kiss your forehead, both of your eyelids, and then lastly your lips. "No I'm noT, I'm tellin' ya the truth. I don't care if your 'eyelids are stupid'. They belong to my Bunny and my Bunny is perfect. Mhm, wouldn't change a thiiiing." J hugged you close and nuzzled your hair with his cheek.

He hated acting all soft but you needed some sweet reassurance. Your condition made you unique and J loved that about you.

One of these days he would get you to fully embrace your individuality. It would take some time and loads of energy but Joker had more than enough patience to help his Bunny be the best version you could be.

[crimeronan]

I'm not an expert but if involuntary that sure sounds like a tic???

i don't want to be rude but yes, you are in fact not an expert.

tics are neurological repetitive and related to movement, not related to me having brain arguments. what's actually happening with me is that chronic pain amplifies negative feedback in my brain & makes it very very very difficult to exist without screaming. at any given moment i'm expending a significant amount of physical energy on not screaming. i'm doing so typing this reply right now. if i expressed the physical suffering i endure outside of my body then i would constantly be having ambulances called on me & i simply do not have time for that.

so when the need to scream intersects in just the wrong way with that mental negative stimuli, it manifests audibly in the form of "shut the fuck up" and "please" and "STOP IT." involuntarily.

i do not have a neurological disorder. i'm in fucking agony. thank u

[fentrashcat]

May 15th- June 15th is Tourettes Awareness Month!

I want to try to do something for at least every other day to talk about Tourettes and my experience with it.

⚠️please be aware that each person's experience is different and I can only talk about my own personal experiences⚠️

For today I'm just going to talk about vocabulary, both medical and colloquially.

Gillies de la Tourette's Syndrome- also called Tourettes Syndrome, Tourette disorder, Tourette's disease, or TS- is a tic disorder characterized by the presence of both motor and vocal tics that last a year or longer and are onset before the age of 18.

Tic- which I occasionally call a glitch- is an involuntary sound or movement. They can be motor based (shrugging, head jerks, blinking, ect) or vocal (humming, saying words or phrases, clearing the throat). They can also vary in complexity, for example saying one word vs saying a full phrase.

Prompt- idk how widely used this one is but I personally use it so including it here- is the feeling you might get before a tic. My common tics have different prompt feelings so I can sometimes know what's coming. I don't always get a prompt, and they don't mean I can change what is about to happen, it's just kind of a warning.

Coprolalia- the involuntary use of obscene language. If you only know Tourettes from popular media, this is likely what you know it for. In reality this only affects about 10% of people with Tourette's, though I have seen estimates that go up to 30%.

Echolalia- involuntary repetition of words or phrases spoken by others. I also count mimicking noises under this but there may be a word for that I'm not aware of.

Copropraxia- involuntary obscene gestures

Echopraxia- involuntary repetition/mimicking of movements.

Tic attack- a sudden severe outburst of tics.

That's all I can think of at this moment but I'll try to update if I think of anymore. My asks are open if anyone has questions I will be happy to answer to the best of my ability 😊

Trigger- sets off a tic. Not all tics have triggers but several of mine do, and some of them are very odd, I'll probably talk about my strange triggers tomorrow lol.

Tic shopping- picking up a new tic from someone else who has tics.

[aloeverified]

What To Know Before Writing an Albino Character

1) General Information:

Albinism is a genetic disorder that results in decreased production of a pigment called melanin in the skin, hair, and eyes, resulting in light color or no color. Albinism is not a disease, nor do people "suffer" from it — though every albino person has their own thoughts and feelings regarding their condition. There's no cure for albinism. People with albinism are more likely to be diagnosed with skin cancer, as well as dealing with things like sun burns, but besides sight problems and eye sensitivity, most people with albinism are just as healthy as everyone else.

People with albinism are typically diagnosed at birth, as doctors can tell by their appearance. If albinism is suspected, a doctor can order a genetic test to get the most accurate results regarding type and gene mutation. Due to eye complications that come with albinism, some doctors will asks for babies to be seen by optometrists. During those eye examinations, doctors can find out if the patient has rapid eye movement, sensitivity to bright light, or misalignment of the eyes. Most people with albinism have photophobia (extreme sensitivity to bright lights), refractive errors (such as astigmatism, myopia, hyperopia), nystagmus (involuntary movement of the eyes, which can lead to abnormal head positioning), or strabismus (misalignment of the eyes).

Due to low or reduced melanin, people with albinism are extremely vulnerable to UV sun damage. To avoid damage from the sun, people with albinism are advised to wear protective clothing, hats, and sunscreen.

Along with that, people with albinism wear glasses that block out UV rays. They also use softer lights in their homes and on their electronic devices. Some albinos experience pain or headaches after being exposed to intense bright colors or eyestrain, which causes them to lean more towards pastels when regarding things they'll have to look at a lot.

People do not always like being referred to as albino, sometimes preferring the term "person/people with albinism." Many don't care, but it's overall regarded as disrespectful and sometimes derogatory to call someone "an albino/albinos" rather than an albino person or the previous listed term.

2) Types of Albinism:

There are two main types of albinism: oculocutaneous albinism (OCA) – the most common type, affecting the skin, hair and eyes, and ocular albinism (OA) – a rarer type that mainly affects the eyes. OCA is the type of albinism that most people are familiar with and that is represented more in the media. People with OA typically look the same as non-albino people, with the exception of their eyes. However, some do have slightly ligher hair and skin colors from their family members, but not by a very big extent. Their visual acuity is typically lower than normal, ranging from 20/60 to 20/400.

OA1 is caused by a change in the GPR143 gene that plays a signaling role that is especially important to pigmentation in the eye. OA1 follows a simpler pattern of inheritance because the gene for OA1 is on the X chromosome. Females have two copies of the X chromosome while males have only one copy (and a Y chromosome that makes them male). To have ocular albinism, a male only needs to inherit one changed copy of the gene for ocular albinism from his carrier mother. Therefore almost all of the people with OA1 are males. While possible if the mother is a carrier of ocular albinism and the father has ocular albinism, it is extremely rare.

As for OCA, there are currently seven forms of oculocutaneous albinism recognized – OCA1, OCA2, OCA3, OCA4, OCA5, OCA6 and OCA7. Some are further divided into subtypes. For OCA, both parents must carry the albinism gene for their child to inherit the condition.

OCA1, or tyrosinase-related albinism, results from a genetic defect in an enzyme called tyrosinase. This enzyme helps the body to change the amino acid, tyrosine, into pigment. (An amino acid is a “building block” of protein.) There are two subtypes of OCA1. In OCA1A, the enzyme is inactive and no melanin is produced, leading to white hair and very light skin. In OCA1B, the enzyme is minimally active and a small amount of melanin is produced, leading to hair that may darken to blond, yellow/orange or even light brown, as well as slightly more pigment in the skin.

OCA2, or P gene albinism, results from a genetic defect in the P protein that helps the tyrosinase enzyme to function. People with OCA2 make a minimal amount of melanin pigment and can have hair color ranging from very light blond to brown.

OCA3 is rarely described and results from a genetic defect in TYRP1, a protein related to tyrosinase. People with OCA3 can have substantial pigment.

OCA4 results from a genetic defect in the SLC45A2 protein that helps the tyrosinase enzyme to function. People with OCA4 make a minimal amount of melanin pigment similar to people with OCA2.

OCA5–7 were recognized in humans in 2012 and 2013. They have reported mutations on three additional causative genes. As gene testing becomes available, and more people with these types of albinism are identified, the complete range of physical manifestations will be recognized, and may overlap with other known types of OCA. Currently, these types of albinism are considered to be uncommon.

Albinism occurs in all race and ethnic groups across the world, but there are some types that are more common amongst certain groups. The most common types of albinism found in the black population of Southern Africa are OCA2 and OCA3. OCA3 is also the most common type found amongst Asian populations. It's important to do research on people with albinism who are the same ethnic/racial group as your character(s) to make sure you are representing them correctly as albinism looks different for each group of people.

As a side note, it's important to know that people with albinism do not always have red eyes. Even those who appear to have red eyes don't actually have that eye color, but it's rather a result of the lack of pigment, which makes the iris paler and thus, the retina more visible. People with albinism can have pretty much any eye color as long as it's a light shade; I've personally met other albino people who've had blue, red, pink, green, purple, and even yellow. In pictures, however, they eyes typically always appear some shade of red.

3) Recognize How People With Albinism Are Treated:

In places like China, having albinism is considered bad luck and many who have it are ostracized and excluded from mainstream society. They're also considered unattractive and inferior to many. Besides their physical disabilities, many Chinese people with albinism say that finding a partner is their biggest struggle.

Africa is one of the most dangerous places for albino people. In West Africa, some communities and families consider it a misfortune to give birth to Albinos and hence, attempts are made to either kill them at birth or banish them from the community. They are constantly abused and ridiculed by the public with derogatory names and social tags that serve as a form of stigmatization.

In many countries of sub-Saharan Africa, people with albinism suffer discrimination and ostracism and are seen as a curse. Many superstitions look at people with albinism as a source of income, so they are mutilated and the parts of their bodies are used in rituals of black magic, under the belief that they give wealth and fortune to those who own them. Some cultures believe that they do not die, but disappear, or that having sex with a person with albinism cures AIDS — which causes a high rate of sexual assault amongst those with albinism.

Not all places view albinism as bad though. In Panama, many people view those with albinism as lucky. In America, many people don't may much mind to those with albinism besides staring and making comments.

Overall, it's worthy to note how people with albinism are treated in the country your character(s) live in. Albinism dictates a lot in people's lives, but for some it can be the cause of their death or severe injury and trauma. People with albinism don't want extensive descriptions of their own trauma, but it's important to not gloss over how they're treated. If your character is from a fantasy setting then you can attempt to reflect how they're treated by looking at countries in the real world most similar to your fictional one.

4) Things To Avoid:

In Hollywood, people with albinism are often depicted as evil. It's become very rare that someone with this condition is viewed positively, they're always either a villain or a comedic relief character whose condition is used to mock them. Avoid both of these as much as you can. If you'd like to make your character with albinism a villain, make them compelling and give them a justifiably reason for their path: don't just make them someone whose naturally evil. If they're comedic relief, don't make them being albino apart of their jokes — give them a personality and make them likable.

Don't make them albino just because you think it's cool. Almost every person with albinism identifies as disabled and it's important to showcase their struggles, specifically with their sight and how they interact with situations that involve bright lights and such. Make sure you're not making them into a pity show, though, as disabled characters shouldn't solely revolve around their disabity. A good example of a character whose disability is a main part of her character but not the only part of it is Toph Beifong from Avatar: The Last Airbender, who is blind like many albino people. That's not to say that people with disabilities are or should be defined by their struggles, but that those struggles are real and often difficult to navigate. They are part of us and help to make us who we are. It might just be my opinion, but if you can ignore all their hardships then that's not an authentic portrayal of anything, really.

People with albinism are also very likely to be bullied for their appearance and viewed as unattractive, so it can be very positive representation to show your albino character as attractive. They don't have to be the most beautiful person in the cast, nor should you fetishize them for being disabled, but it can be nice to show other characters having feelings for them or giving them a romantic partner.

And most importantly, don't make them albino for no reason. Why does your character have albinism? What character or narrative purpose does it serve? How would the story be different if they didn't have albinism? Ask yourself these questions, and if you can't come up with good answers then maybe your character shouldn't have albinism. Think about how being albino affects them, the people around them, their story, and the overall plot. Are you making them albino for the sake of seeming diverse and woke or because you want to represent this group of people?

If your story is leaning into fantasy then you can come up with very easy explanations for why your character is albino. Maybe their people live underground and evolving to have albinism was what as best for their survival. Maybe your character is a clone, in which case they don't need their parents to have the albinism gene.

5) Closing Notes

This is just a general overview for people to get started on writing their albino characters. It's important to talk with actual albino people as you continue writing. Please do your own research on people with albinism to get more detailed insight on the condition.

If you're making a professional piece of work then you consider hiring an albino sensitivity reader to help ensure your depictions are appropriate. If there's anything you're unsure of in the meantime, researching or asking an albino person is best.

[raisin-shell]

Seeing someone else post about pots got me to be curious.. how would the turtles react to tourette's. The involuntary movements and saying things

While I have much respect for people suffering from this disorder, I would find it a bit difficult to engage with someone like this. I like certainty. Some would go as far to say I’m a bit boring. But the sudden outbursts would bother me. I know they can not help it.

Don’t worry bout Leo. He’s insensitive as hell sometimes. He don’t mean it how it sounds trust me. It would take a bit of gettin used to but as long as ya don’t punch me, we’re cool.

Under no circumstances would they be allowed near my lab. Trust me it’s more for their safety than my sanity.

I’d act like I normally would with any other person. I’m sure they know they have tourettes, they don’t need to be reminded ya know?