if only they knew

i hung out with a friend today.

i don’t really consider myself to have many friends. maybe that’s because the words mean different things to me. i only have maybe two or three, all of which i rarely see. i keep people at arm’s length, trying not to let them get too close to me. not because of my social anxiety and deep-rooted fear of people, though there’s that too.

i keep people away because it drains me too much to bring them any closer. the buttons of a phone, the maneuvers of a shower, the voices around that rattle like bones in my ears and mind. the words of a conversation cut short because i suddenly don’t remember what we were talking about, or what i was saying just seconds ago. even without going out somewhere, the strings of communication that humanity treasures so dearly and demands so much of feel taut within just a few short minutes.

to try to explain this to someone one has just met, a stranger with no idea of what living with debilitating and unapparent disabilities is like, is like trying to explain the concept of physics to a stuffed bear. the worlds are just so far apart that there’s little room for leeway in one direction or another.

if only they knew.

i keep people away because i don’t want them to worry. to force them to try to comprehend something that so severely impacts your ability to function in the world, even with things so simple as lifting a fork to your mouth. i keep people away because i don’t want to concern them with something so heavy of a burden that belongs to no one but myself. because i don’t have the energy to battle every single day with their preconceived ideas of what living and dealing with human interaction is like with disabilities. because any energy i put into interacting with these people will at some point result in pain. not just emotional or mental, but also the easily neglected physical pain.

because i know, oh so well, that they will not have the patience to stay with me when it takes me minutes to formulate one sentence, minutes to move from one area of a room to another, hours to get dressed during the day or to even get out of bed. to listen when i halt one conversation short because i don’t remember what i was saying, only to pick it back up from that point hours later.

i will never have the words to explain how much it takes to open my eyes in the morning, how much it takes to cook myself a simple breakfast, or to move myself to a chair just to sit in the house all day.

if only they knew. maybe then they would understand my definition of friendship.

call to arms: Help save Dryads Rest

this is not something that i typically do. but we are in desperate need of your help.

my aunt, widowed and living in extreme poverty, has been served an eviction notice from her mortgage lender. this lender, being a part of a nation-wide classist housing scheme and financial crisis from the illegal inflation of false debts, has been relentless when addressed and asked for assistance. they seek to drain every penny from her, despite her self-employment in a dying field.

she currently lives in the middle of rural woodlands, in a rundown and falling-to-pieces house with the company of her goats and dozens upon dozens of extravagant hand-made costumes of various eras. she rents out this property to groups in LARPing [live action roleplaying] communities and groups developing systems of roleplay therapy for neuroatypical folk, such as those in the autistic spectrum. this property is her only semi-reliable source of income, aside from rarely selling a costume to a customer. with my family and i on the other side of the country and both of my grandparents on her side of the family deceased, she will have nowhere to turn to.

my mother has set up a donation button through paypal on my aunt’s blog page. but even if you cannot donate yourself, please try to help us help her by signal boosting this call. link it to people, reblog on tumblr, any way you can. we need all the help we can get.

break edition: “side projects”

so since i’ve been in an oddly timed relapse i haven’t had much energy to write anything expansive.

but! i have taken up a few responsibilities that mean quite a bit to me, for several reasons. i hope they will be of help to others as much as they have been for me.

if either of these projects are inaccessible in some way, please let me know! the easiest method of getting in touch with me is through email, available on my About Me page.

f yeah schizotypy!

from the about section on the tumblog page:

f yeah schizotypy is a tumblog developed by static nonsense meant to help bring awareness to the very real experiences and issues those within the schizotypal spectrum face. this page is open to anything within the spectrum (schizotypal, schizoid, schizophreniform, schizoaffective and schizophrenia). right now it will be focused on small bits of writing and reblogs, though eventually it may be open to submissions.

a large part of the reason why this page feels necessary is because of the levels of misinformation and the misconceptions surrounding the conditions within this spectrum. we want to counteract this with the voices of those affected, not the voices of the majority or doctors. too often are we erased in favor of someone else’s views on our experiences. here, that will not happen.

i got the idea after coming across the f yeah autism spectrum tumblog. knowing from experience how scarce awareness information and presence is about the schizotypal spectrum, i decided to extend what i often do here to the commonly known medium of tumblr where there is a sea of potential for reblogs. right now i’ve only been able to present my own experiences and counter the occasional ignorance, but i hope to expand this and even possibly open up submissions. i want to show the world that we are here, what we experience, what we face in this world. i want us to have a voice in a world where doctors and scientists attempt to speak for us, and societies that attempt to silence us.

Erana’s Peace

note: the site provided does offer two skins designed for visibility aid, one that has white backgrounds with black text and another that has black backgrounds with white text. currently they are selectable by a drop-down menu toward the bottom of the page – i have not found a way to move that or to make them accessible through other means by nonmembers. there is also a script at the top of the page that allows you to choose the font size of the page, again in a drop-down menu. browser scripts must be enabled for the site in order for each function to work.

a brief description found on the portal of the website:

We are a social justice and acceptance guild built on the Wyrmrest Accord (US) server in Blizzard’s MMO World of Warcraft. While the originally established guild is Horde, we are a community open to all members on all servers, factions and countries around the world. We seek to be open and accepting of all members, current or future, providing a haven from systematic oppression and a community of solidarity and union.

being a gamer and having my own experiences with marginalization, i wanted a place in the game i play the most (WoW) where i could feel comfortable with myself amidst the toxic environment of the gaming community, and where others could have that sense of comfort. after numerous failed attempts, my fiancé and i decided to just make it ourselves. this is where the vast majority of my energy has been going [outside of living of course!], as we attempt to create and further develop this desperately needed space for so many members of our community, gaming or otherwise. no space is ever perfect, and as such it is in constant development. but we are doing our best, and are more than welcoming of anyone who feels the draw or desire of inclusion for such a place.

as it is getting late here [early? it is technically morning] i really should cut this short. i might expand on it later when my brain is less fatigued. but right now, we will see where the road takes us.

update

thanks y’all for your responses to my last entry. i did manage to find something that i’m going to try, when i went looking for indian soap nuts locally i found a small package of laundry powder that doesn’t have fragrances, dyes or unnatural chemicals that i got for $3.50. an ok price for a trial run – if that doesn’t work out then i’ll try something else. fortunately i don’t have to worry about fabric softener, i have dryer balls that work pretty well. and the natural store seems to have expanded their stock bc the brand that i bought for my body wash is there now, and said brand has shampoo and conditioner. not the same brand for the shampoo and conditioner i’m using now, but still worth a shot and at a much more affordable price.

so yes. i’m going to be trying that powder out tomorrow when i don’t have work and i have the spoons, after i buy a tablespoon [pun not intended] for it today. thankies for caring and helping me out, i do appreciate it and i think y’all are wonderful <3

one part snark to one part seriousness

dear customers, coworkers and other such individuals who douse themselves in fragrances and then proceed to invade and poison my workplace:

you reek.

no, seriously. i know i’m supposed to be providing superior customer service, but once you step anywhere near my workplace, even if only in passing, i cannot think once the air is tainted. my head gets swimmy, i begin choking and coughing, and one hell of a headache starts piercing me right behind my eyes. this isn’t bc i think you smell bad, which people often think when someone starts coughing only when in your general proximity. it’s bc i’m disabled, and my sense of smell has become more powerful than most people can even imagine. there are days where i can be left choking over an entire shopping cart of clothing bc there is one article in there somewhere that had been washed.

people may think i am kidding when i say these things as literally as i do. i would then urge you to speak with one of many people who has chemical sensitivities, to perhaps show you that this is not a case of one or two people. several people [tho numbers are unknown] are bound to their homes or must go through extreme measures just to step outside of one’s home in order to run basic errands or even see their own doctors.

perhaps then you might be able to understand. or if not, at least stay away from my fan.

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snark aside, this is a call for aid.

as my last post has suggested, i am in relapse. this is odd for me, as i do not typically relapse during summer months – typically it happens during the winter with the snow and severe cold. i don’t know why it’s coming up so early for me this time, but it’s left me in quite a sorry state. most of it i already know how to handle. but for one reason or another, my sensitivities have shot through the roof. this is quite alarming seeing as i’m still only just learning about how extensively chemicals inside and outside of my home are affecting me [albeit without the assistance of my doctors]. as such there are things that have never affected me before [or at least not that i am aware of] but are now, such as showering and laundry supplies.

i’ve been taking care to try to remove some of the problematic chemicals and fragrances where i can, tho finances make this difficult. shampoo and the likes i think i can work with, but i need help with ideas from my readers for the laundry situation.

currently i use the purex complete 3-in-1 laundry sheets. my fiance introduced them to me bc of how difficult and painful it is for me to use bottles of laundry detergent, both in carrying and in pouring. the sheets meant that i could do my own laundry without assistance, and i wouldn’t have to put them off for ages bc i didn’t have the energy [well i still put it off but not for as long]. but now for one reason or another these are starting to set me off, and last week i nearly had to call into work bc my own clothes were starting to make me sick. i need a way to do said laundry without including the potent chemicals and fragrances in most laundry detergent, in a way that will not further aggravate my disabilities [joint & muscle pain/weakness & low energy primarily, and esp since i will have to bring said products down a flight of stairs at least once], and in a way that i can reasonably afford seeing as i am also incredibly poor. access to products around here is quite limited and expensive – a single reasonably sized bottle of fragrance-free shampoo here can cost me about $17. meaning i would likely have to start getting these products online, which poses the problems of shipping costs and questions of how safe their products actually are.

so yes. given the complexity of my situation, and how little experience i have in searching for such products seeing as it hasn’t been a problem in the past, i am in desperate need of your help. i am hoping that someone will have ideas and experience where i have none.

i won’t apologize anymore

my heavily threaded guilt complex developed over oh so many years has been getting to me. telling me that i should feel bad for not posting as frequently as i have, as i should, about subjects that i know i should be talking about but just haven’t had the energy for it.

but see, the problem with that is that i shouldn’t have to feel that way. it’s bullshit, ableism fed to us telling us that we should be more productive, that we should be performing for people, that our bodies and minds do not matter in light of the demands of others.

things have been quiet here. not because i’ve given up, or because i’ve lost interest in writing, but because i’ve been doing my best to take care of myself first. the battles with relapses do not leave much energy for lengthened, eloquently constructed, edited posts. and while a part of me feels as if i should be sorry for this, i need to come to terms with the simple fact that i shouldn’t. my health is a higher priority, even when blogging about said health, and i won’t be shamed about lessened ‘productivity’ anymore.

i won’t apologize anymore. it will be a long and tedious battle, but here it is a start. a journey to reclaim my body and mind for me, not to be taken from me by the demands of the people around me.

there are a few posts and ideas that i’m still in the middle of working with. they’ll be posted eventually, possibly ‘late’, once i can get all of my thoughts together. which isn’t an easy task, but one to be done on my own time.

Dating, Disabilities, and D/s: Well, why the fuck not?

this is a guest post for Kinky Disability written by my Dom and fiancé. He is very new to kink and power exchange, esp when learning about and dealing with disabilities, and i wanted to include that in this series bc of the unique position and perspectives that such a path brings. bc while self-care within the kink community and bdsm practices is important, so is the support and understanding of our loved ones and peers. as the community is full of ableism, learning Doms frequently don’t learn about the limitations that a partner with disabilities may have, and thus have little to no understanding of how to approach it should such a time come. our partners (be they in kink activity, romantic, etc) need to be able to grow and learn with us if our community is to grow and thrive, esp in regards to inclusion of people with disabilities and combating ableism.

I’m able bodied, sane, and in a position of privilege, and I’m also in a Dominant/submissive relationship with my beloved fiancée, who is disabled. I’m rather new to the relationship, and in fact, I’m new to the concept of privilege. My fiancée is the person who explained the principles behind ableism and privilege to me. We are now in a sort of pseudo-D/s relationship. I use the pseudo prefix because I am not familiar with the ideas of D/s. My fiancée is slowly explaining the concepts and fundamentals of a proper and successful D/s relationship. Ours is a relationship of learning and progression. I will not lie or even attempt to lie and say that I know everything there is to keep my relationship healthy and successful. I am, however, doing my best to keep them happy and give them peace of mind.

It’s not much a guest post unless the guest is thoroughly established and proven to be credible. I am no expert on psychological or physical illnesses. I am not learned on D/s relationships or fundamentals. In fact, I just learned about ableism no more than a year ago. It would be foolish of me to say that I know everything there is to know about privilege and D/s. I will say, however, that I know enough to be able to analyze and understand my own faults. I will admit that it is difficult at times to catch my own ableism, and I still, sometimes, say things that can trigger people. However, I’d like to think that I learn from the mistakes that I do not catch. Then again, assuming anything about yourself in a positive or self-boasting manner is often, if not always, seen as arrogant and pretentious. I do try to correct myself, though.

I was – and probably to some degree still am – ableist. I started dating my beloved long before I knew about the degree or severity of their disability. I knew of a few things, but I did not know of nor did I bother to ask how they affected their life and daily routine. As we came close, we struggled from time to time because I continuously attempted to solve my beloved’s disability and problems with logic and calculations; I was trying to quantitatively measure my beloved’s mental and physical disabilities. Needless to say, I drew them to tears at one point, and as I think back about it, I am stricken with shame as I write this. For a moment, just a moment – a fraction of the quickest second, I felt my hands tremble. It wasn’t a lot; my beloved and I did not argue a lot, but the arguments we did have were rather intense and frustrating for me because of my limited perspectives. I must admit, looking back upon the arguments, that they, in a way, taught me more and more about ableism; you see, we started arguing at first, and during those arguments, they would counter me with different ideas and concepts that were alien to me. I found that I had little to fall back on in terms of rebuttal except for moot points and technicalities, which do not work outside of patents and the courts. At that point, I thought to myself that if I’ve nothing to counter my beloved’s counter, then I’m either incredibly untalented at arguments and debates or, just perhaps, my beloved had a point and I should listen instead of argue. So, I did. In fact, I started listening a lot more after I read something my beloved wrote to me. The idea was and still is simply fascinating to me and serves as the governing theme to all my current thought patterns; “The number of trees in a forest need not matter. All that matters is that there is a forest, beautiful and ever growing, ever changing.” That’s when I realized the new perspective my beloved was instilling into me. I had been, and to some extent still am, too fixated and focused on the definitions and criteria of what is or is not a disease and what is or is not a legitimate argument either for or against a possible cure and/or remedy. I was dedicating myself to trying to tell my beloved what they probably have already heard a 1,000 times before me. In essence, my beloved’s little quote is a monumental influence on how I look at all situations now; while we cannot forsake the governing dynamics and fundamental roots, focusing too heavily on the tiny details takes away from an entity as whole. Thus far, dating my beloved is more than just a humbling experience; my fiancée may have well given me a leg-up at getting into law school.

Now, about the whole D/s relationship, I’m new to that, too. From what I have gathered and learned from my loving fiancée, it is about an exchange of trust wherein both partners act within their own and their partner’s limitations in order to demonstrate a sort of emotional hierarchy. Though, hierarchy may not be the best word. D/s seems to be about exchanging services between partners to satisfy the need to feel either dominant or submissive. I didn’t actually have a need or desire to feel dominant, and truth be told, I still don’t feel an actual need, desire, and yearning to be dominant. I do, however, feel a need to satisfy my partner, and they’re satisfied by feeling submissive. Thus, I guess you could say I desire to be dominant because I desire to satisfy my partner who desires to be submissive. I’d be lying, though, if I said I’m not developing some forms of dominant mannerism. As to the type and degree of dominance I’m developing, I’m keeping that private.

I’m in two situations; I’m dating a disabled person; and I’m in a D/s relationship. When it comes to being the Dominant to my beloved, I have to keep in mind of their disabilities. There are physical disabilities that make certain situations difficult if not impossible. Then, there are certain concepts and ideas that may prove to be very mentally traumatizing. However, dating a disabled person does not mean you focus on their disabilities; that’s not different than dating a non-disabled person and focusing on their faults or features that trigger your pet-peeves. That also isn’t to say, however, that dating a disabled person is exactly like dating a non-disabled person. As I said, I do not focus on her disabilities, but I do have to keep them in mind when we’re going on about our daily lives. My partner does not need special attention, my partner needs me to simply notice, learn, and pay attention to their needs. Most of the time, a simple kiss, cuddle, and snuggle will go a long, long way.

I’m not an expert on disabilities, and I’m still ableist in some situations. I even make my own partner feel uncomfortable sometimes, but I’m still learning. I do everything I can to make my partner happy. They submit to me, and in turn, I am given the privilege and responsibility of making my beloved partner happy, safe, and loved.

the mole hill that is dermatillomania

trigger warning for description of compulsive actions (hell, i know it’s happened to me) and a long rant about society’s sexist body shaming

[image is a zoomed in snapshot of someone’s lower face. showing just the lips, cheeks and chin below the nose, the contrast between their incredibly pale skin and several open red sores is significant.]

so. i want to talk to you about dermatillomania. dermatillomania is the compulsive need to pick at one’s skin. sometimes it’s related to stress and anxiety, sometimes it’s related to bodily dysmorphia (where one perceives their body as literally warped in ways that are not apparent to society), sometimes it’s related to obsession and compulsion. sometimes it’s related to more than one of these things at once, leaving addressing it very, very difficult.

how one perceives their dermatillomania is always different. i would not be able to tell you how it feels for someone else. but i can say that for me, it’s related to obsession over skin being ‘imperfect’ with all of its little bumps and variations. i rub my fingers against my skin when i’m thinking and when i’m stressed or anxious, which makes me aware of those little bumps. and because i have ocd, and in my head it focuses a lot on what isn’t ‘perfect’ or ‘in place’, that rubbing becomes clawing. and that clawing does not stop until the imperfection is gone.

now. why did i call it a mole hill? because that’s how society perceives it. they feel that we are ‘making a mountain out of a mole hill’. that we are making a big deal over nothing, and just need to stop and act normally like everyone else.

if that’s the case, then that’s a pretty damned big mole hill.

the thing about dermatillomania and many other related anxiety or compulsion disorders is that it’s not something you can just ‘stop’. it’s triggered in one way or another, sometimes trauma, sometimes the person’s individual ability to process and handle stress (which, before people start up on that too, is neurological and thus not something that can just be ‘stopped’ or ‘chill out’). and then it becomes one of someone’s various compulsions when coping with stress. some pull at their hair. some grind their teeth. some bite their nails. and some of us pick and claw at our skin.

when you’re dealing with something that becomes a large part of how you respond to stress, it’s not exactly easy to stop. i’ve tried bandages, both on the sores themselves (or the scars and scabs they produce) and on my fingertips. i’ve tried people verbally correcting me. [1] i’ve tried people physically correcting me. [2] i’ve tried cutting my nails. and so far, nothing has worked.

why?

because what i am battling is not just my need to claw. no. what i am battling is society having taught me that our bodies are flawed, and that we have to seek out every manner possible to correct it. we have to fight against a world that says our skin must be smooth and clear, no matter what. we’re told that airbrushed models are real depictions, that these are what we have to look toward, that if we can’t achieve this we’re of little worth – if any. we battle a standard of beauty and perfection that is artificially created by industry, constantly tossed products and labels in order to make us buy ourselves into this dream world that doesn’t exist outside a magazine producer’s copies of photoshop.

and because of it, is it any wonder that most people who have dermatillomania are women? and those of us who are subject to society’s rampant sexism because of how our body is, even if we don’t necessarily identify with it or how society perceives it?

like many, i was fed this garbage from a young age. and with the development of my ocd comes compulsions shaped by society’s perception of me and my life. and so i strive internally for that perfection, for the smoothness that my fingers seek.

and yet instead of the smooth, flawless skin that society has taught us that we should reach for, sores and welts form. glaring redness that grabs people’s attention, in a fashion that is far from desired. for seeking what society has told us to seek, we are shamed for what that society perceives as disfigurement and self-injury. the skin that we try to fix, we are told to hide away because it bothers others.

because yes, people do notice. and people do comment, and people do try to correct you without you wishing them to. i have had complete strangers, that i had no desire to speak with, try to give me tips on clearing acne.

this mole hill? is not so small. this mole hill is much bigger than you perceive it to be, because it’s been told to hide for so long.

and the real mole hill is society’s lack of concern for the harm it inflicts upon people, for telling them who they must be and how and why. the real mole hill is the fact that people don’t give a damn unless your ‘disfigurement’ bothers them.

we are not making a big deal over nothing. this is a big deal. because it’s directly related to the system our society has constructed, that attacks so many people for not meeting up to some preconceived standard that is impossible to achieve.

[originally posted on tumblr]

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1. no, having people correct me when i do something i want to stop is not abuse or harassment. i’m kink, and discipline is a large part of how my mind functions. if someone i view as holding a position of authority over me that i care about and hold them to of my own accord, then i am more likely to listen to their verbal corrections over my own.

2. i don’t mean with smacks or anything. i mean gently moving my arm away from where i’m compulsively reaching to when i start to claw (typically my face). smacking me would probably just make it worse and make me lose trust in who i’ve entrusted this to.

misdiagnosis and being the crazy patient

This is my post for may’s Blog Carnival of Mental Health, developed by Astrid and hosted by the madosphere, on the theme ‘patients and professionals.

mental health professionals and i don’t have a very good track record.

ages ago, i remember my mother trying to get me to go to therapy. i declined, because i was sure at the time i was fine. this was after the hell that was middle school, but before the mental and psychotic hell that was high school. as far as i remember, the only reason she brought it up was because a psychic told her to. i remember her saying that the person insisted that i wasn’t crazy, but i still needed the help. i think she was just trying to reassure my mother that the stereotypes surrounding mental illness aren’t true, and while yes, my trauma did significantly impact my development and perspective of the world, by no means was i like society’s depiction of the crazy person that paces back and forth talking to themself(ves) [1]. that came later.

high school hit and things went to hell again. this time i became so drenched in my own darkness that i couldn’t see the reality outside of my own. this is what led to my hospitalization the year of my graduation.

that hospitalization is why i’m so skeptical of mental health professionals in regards to my own situation.

during my two week stay, i attempted to make it clear that i was hallucinating, i was delusional at the time, and yes even though because i’m crazy i knew this and could make people aware of such.

except that instead of listening to me, they went with their perspective of my health, diagnosed me with depression, fed me medication that i never needed and never worked, and forced me into social situations that made me incredibly uncomfortable. i was forced to participate in group therapy and group activities, despite my severe social anxiety, and any attempts to resist this would lead to me being written up. for those unfamiliar, being ‘written up’ is essentially like written warnings – you got only so many before your ‘privileges’ (see: group activities that i never wanted to be a part of in the first place, or use of colored pencils for drawing or writing) started to be revoked. being more afraid of confrontation than my peers at the time, i didn’t push any further. had i known the extent and reasoning behind my social anxiety, maybe i would have pushed harder.

needless to say, this was a problem. by instilling a hierarchy of power, and asserting that power in a way that worked on their perspective of the patient instead of accepting and working with input from that patient, they did not allow for the development of trust. any lack of trust, and thus any ‘acting out’ based on their perspective of the situation, resulted in the patient being punished for their ‘behavior’ instead of any acknowledgment for why they might be acting in the manner they are. not allowing for the development of trust means less communication between the patient and the mental health team (staff, nurses and psychologists/psychiatrists), and less willingness to work with each other. less communication means less progress, and can result in continuous spiraling or, like in my case, hiding every problem in order to be left the fuck alone, and eventually discharged on the idea of ‘improvement’ that was never actually there, just a farce i put up to be left the fuck alone.

now, because of that lack of development of trust in this first attempt, i have little to no trust of any mental health professional i come into contact with, meaning i’m less likely to seek help with coping with my illnesses. granted, i did eventually seek out help again, but it took an abusive relationship and psychotic breakdown to do it. that and DID – someone in our system seized control long enough to actually get us to push forward toward therapy and treatment, instead of ignoring it entirely. because we would have.

this story isn’t the first. far from it. there’s a lot of us with these horror stories, largely in part because of the stereotype that crazy people don’t know about their own mental distress and thus can’t be trusted to actually seek treatment, because obviously they’re not in touch with reality to know that they’re, well, not in touch with reality.

except for one small problem – uh, actually, frequently we do. the problem isn’t that we don’t know, though in some instances we may not. the problem is that when we do, people don’t listen to us. because in their eyes, we don’t actually know, the fact that we think we know must be a delusion. and thus they focus on their perspective of how we feel. WHAT THE FUCK?

see, treatment of one’s illnesses and disorders (be they mental or otherwise) is dependent on two factors – the professional treating the condition(s) and the patient being treated. the patient must articulate the symptoms and what they experience so the professional knows what to possibly treat, and what direction to look in when coming up with said treatment and diagnosis. the professional must listen to these described symptoms in order to come to a reasonable diagnosis that makes sense with the symptoms described. because, yanno, treatment won’t work if you’re treating a condition that’s not there.

no, just because we’re crazy doesn’t mean we’re making it up, or we’re wrong because we obviously perceive our symptoms differently than how the rest of the world does (hint: this concept doesn’t actually work, as how symptoms work is how we’re affected by them and thus perceive them). believing this creates that hierarchy, placing the ‘professionals’ above the patients instead of them working together on equal ground. and that hierarchy affects trust and how willing we are to work with those professionals in the first place. if we do not trust you, you cannot adequately treat us, and no, you can’t force treatment on the unwilling. that disconnect just makes things worse in the long run.

we might be the crazy patients, but that doesn’t mean we don’t know how we’re affected by our crazy. after all, that crazy is affecting us – we are the ones that live with it day in and day out, the hours of the days and the days of the years. we are the ones that see inside our heads, hear the thoughts racing through our minds, feel the emotions that roll up and down and inside and out. this isn’t something you can just put a hat on with shiny lights and see everything that we think and feel. you have to be able to trust us, that we’re the ones that know how mental illness affects our lives. but to know that, we have to trust you. and that doesn’t work out so well when the system and the people within work against us.

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1. i know my wording here seems awkward. basically, i use the term themself as a singular gender neutral term to refer to other individuals, while reserving the term ‘themselves’ for those of DID or plural systems. typically folks use ‘themselves’ even in reference to one individual, but due to my experiences with the DID and plural communities, and being nonbinary with a self-preference of the singular they for pronouns, that usage always feels awkward for me, so i avoid it. i understand that this isn’t typical usage, hence the clarification.

what lurks in the night

there is this Thing that happens to me when i try to sleep sometimes that terrifies the shit out of me.

i don’t know what it is, or why it happens. but my body goes numb, i start to feel like i’m moving but i can’t actually move my body – i have no control over it. i try to fight against it, but the weight against me is so strong that i barely budge. and i can see my body moving without me, the room at different angles as i twirl around in my bed or fall off.

and then my eyes open, and i realize it isn’t real.

but see, it looks so real. it feels so real. i can feel every second of it, and i panic. i panic and scream internally and i want to shout out and get help from anyone i possibly can, even though no one can see me or hear me and i can’t open my mouth to utter a word.

but sometimes, what’s even more terrifying is that even when i open my eyes, sometimes it happens again. i get a quick moment of relief, and then i’m out of control over my body again.

it cycles. it can cycle anywhere from four to five times before i realize after my eyes open again, that i have to move somehow or else it’ll happen again. i shift positions and my eyes close.

and then it comes back for me.

there is no way to make it go away. no amount of shifting, no amount of mental control or comfort. as long as i lay there, it will come after me. the only way i get relief is if i leave my bed and do something else, keeping myself up until i can’t stand it anymore and my body starts to sleep for me.

only then, only then will it leave me alone. until another night when it comes to terrorize me again.

this Thing, i call it that because it is something i can never reclaim for myself. this Thing, i have no control over when it happens or how or why. it decides my fate for me. and it terrifies me. every time it starts to happen, the shouts start in my head.

NO NO NO NO NO NOT AGAIN NO LEAVE ME ALONE

and then eventually, after it’s had its fun with me, it goes away. for how long, i never know. days, months, sometimes a year or two.

i never know. not until the panic starts. not until those screams start, as i feel the numbness take over my body.

every time, i hope that it’ll go away for good. that i’ll get some sort of peace.

but i never know.