Twisted Trunk: The Point-One Percent of the 18%

There are things in this world that exist under eye-level; that exist covertly. That kid in your class who had trouble reading out loud may have dyslexia; that girl who wouldn’t meet your eyes may have autism; that overweight person you reprimanded for eating too much might be starving themselves, that friend who always has such bad breath might be suffering from bulemia; that old roommate who constantly canceled plans might have anxiety; and that teenager shopping in pajamas with hair that doesn’t seem to have seen a brush in weeks might be suffering from depression.

That young person parking in a disabled spot with a plaque on the rear view mirror who seems to be able to walk fine? That’s me. Watching me, you could so very easily conclude that, besides perhaps an odd gate, I’m fine and am abusing my grandparent’s plaque. I’m not, but I still need it. We exist. And I’m ever extremely conscience that I am far from visually fitting the mold people have for using disabled parking. But that doesn’t mean I don’t need it. Some elderly person who doesn’t have a doctor-ordered plaque may take it upon themselves that I’m not “worthy” of it. And that scares me.

I have an anxiety disorder and it scares me that someone might think they’re more entitled to my plaque that I consulted my doctor about, and that they’re going to “put me in my place.”

It scares me that I might be confronted by a self entitled person more abled than I am. It scares me that I can’t take a hit—any kind of hit.

I don’t owe these people an explanation or anything. I know that. And I could easily walk away from them, but I know they could follow me and scream at the employees within whatever store I’m entering and make a huge spectacle of it, or vandalize my car while I’m grabbing the things I need. So what do I do? I don’t know. But I do know it will depend on the person and how my day’s gone: on a good day when I have time I might amuse them and explain that I don’t owe them shit, or I could be having a bad pain day and not even be willing to give an ant any attention much less people like this. It all adds a level to shopping or even just going out that makes me not want to.

For a lot of us seemingly abled disabled people, it’s a very tight rope we walk. Do we give into the demands of an able-ist society and risk flare ups or episodes? Or do we understand and accept our disability/ies and risk being reprimanded by abled people that don’t accept anything other?

Personally, I’d rather finally accept myself enough to understand and respect my limits to keep me able to stay on my feet as long as I need instead of flattering people I don’t know at the cost of hardly being able to get up the next day. I don’t owe them a damn thing. I don’t even owe my family members the act of an abled twenty-something woman. I don’t owe them the feeling of them being the only ones “allowed” to be even minorly disabled.

And neither do you.

It’s a long road but damn, is it a freeing one.

9-21-20

PS:

To others suffering and who may also want to share, I’d honored to help you share your story!💖

And I’m always here if you need to chat❤️❤️

To those suffering: I see you; I support you; I love you.

TW: SA

I was one of those kids super interested in mythos, still am in fact, but there was one that almost haunted me: Medusa, and it’s taken me nigh ten years to finally be able to put it into words.

The story of the beautiful priestess of Athena is a tragedy. Whether you know the myth of her being braggart about her beauty or quietly humble is neither here nor there, nor is the braggart version any justification to what happened to her. This is also why I’ve always had a grudge against Poseidon, who I hate mentioning even the name of; him and the other Chad brother--hate me for that if you want, I don’t really care. Anyway, he decides he just has to have her and a sexual assault ensues. What follows is Athena, of all the deities, punishing not the dick that needs a fucking padlock without a key, but the comparably helpless priestess. Medusa is not only cursed to be a “hideous” monster that turns anyone who meets her eyes into stone, taking every beautiful thing from her but also exiled.

Some say, “but wait, hold on. Think about Athena for a second: she’s a woman in this heavy hitting manscape and pressured, of course she can’t punish him. (An aside: uh, why not? She’s literally wisdom and badassery, or that’s at least what I’ve heard. She’d be able to find a loophole easily.)

To that I say, ok, fine, but what happens after? Her story doesn’t just end there. She doesn’t get to live out the rest of her however immortal life with her gorgon sisters, taking whatever peace and solace she can in between some man with something to prove trying to kill her (again, Athena had to know this would happen in some capacity).

No, some non-entirely-consensually begotten child of her abuser’s brother gets a stick up his ass. Now, I don’t say any of this to belittle what Danaë was going through, I’m just quite unhappy Medusa had to be dragged in. So Danaë’s demigod kid goes out to “get something” to end his troubles, aka, chooses a sort of roundabout way to end his issues instead of the first approximately three hundred more direct ways. And who just so happens to be his target? Medusa. Specifically, instead of her beauty this time, it’s her monstrosity and petrifaction ability—pretty convenient for it to still work even when she’s dead and beheaded. And who just so happens to help? Athena.

So… yeah, take the above argument and stuff it somewhere, please.

Then Medusa is murdered and following that, her two children, one of them being Pegasus who is used by the boy like a beast of burden, side of the beings that made their mother’s life a living hell. And he totes her disembodied head around like a trophy!

Today, she’s still hailed as a monster while her abusers—the lot of them—get exalted on their pretty little, white marble pedestals.

Does anyone else see what sort of messages this sends???

Let’s review: a woman is raped, turned into a monster, exiled, hunted, killed, used as a prop and her children are also used. She’s viewed/used as a trophy twice. She’s betrayed most of her life. And I hate to even begin to imagine the sort of self loathing and dysmorphia she’d have not only from being assaulted, but also being non-consensually transmuted.

The cherry on top? She can’t even rest after death because the deity she swore to serve and who betrayed her at least twice, decides to do so again by slapping her visage on her shield.

Medusa is a strong survivor of sexual assault. She’s beyond strong to have made it through what she did. The only solace I can get out of her story is not even something in her story but of historical facts: her name means “protector,” and her image was used to delineate women’s shelters… but even then, men still used her on their shields to protect them.

(I know I talk “as if she’s real,” I mentioned earlier that the topic was mythos, so stop typing out that comment.)

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

CW: angry

DISCLAIMER: I do NOT condone any hunting for, bullying or doxxing of the people mentioned.

I recently committed a cardinal sin of the internet: partaking in Youtube comments. I’m by no means a commenter, but due to the nature of the content, I couldn’t stay silent. I am by NO means saying this to put anyone on blast, I only thought this to be a “good” example of what we’re (neurodiverse community) dealing with.

In watching many Tiktok Compilations, Youtube had begun to, at least a year ago, spit all kinds of compilations at me. I happily watched ND and DID and chronic illness compilations. However, seeing these “cringe compilations” (which, without the mention of mental illness, usually were made up of a good amount of such videos), made for a surely sour mood. I “tried” these out of curiosity and just got disgusted with how adverse to differences these compilations were, and started avoiding them by clicking the “not interested” options.

That changed when a commentary video came up--it obviously being commentary from the cartoonish avatar as part of the thumbnail. I tried it because, believe it or not, I have found some videos that are legitimately commenting on inclusivity and swearing off the PROVEN fakers, but they are very rare.

How wrong I was….

There were only three Tiktok videos this individual “reacted” to. I felt shell-shocked. They even took this video of an outspoken individual with DID giving an “angry reminder”--for which there was a trigger warning, and falsely pigeon holed the entire thing! Every single very valid point! (I managed to find this video and that individual gained a follower from me, they make very good content!)

Due to the faux information--and I did first check this person for any credentials: psychological degree (one requires a masters degree and personal testing for a valid diagnosis) and/or personal experience. They had none! And even stated in their About Page that “everything they say is satire or a joke.”

Uh….

Excuse me!?

You cannot say that then proceed with spreading misinformation that HURTS people. That is why I commented and in the nicest way possible that I was capable of:

<> Added to give clear delineation of beginning and end of comments.

ME: <You need to stop this. There’s only so much of this misinformation and bullying we can handle before we all start to throw the towel to the wall. Please stop. First of all, you don’t seem to have any certification to talk about this and diagnose whether we’re for real or faking (besides that, it’s in bad faith to my knowledge to diagnose based off social media without any actual tests). Leave it to the professionals that spend years studying this and working with us. You apparently deciding what “makes sense” for us to do is part of the problem that perpetuates harm against our community. You may not personally be trying to hurt us or encouraging others to hurt us, but those that consume your content and others like this  may take it to “the next level” and cyber bully us, dox us or turn physical irl.

We literally can’t win in this “you’re faking” argument because if we act the way people (especially laypeople) expect, then we’re trying too hard to be dIfFeReNt, and if we don’t then we’re still trying too hard to be nOt LiKe OtHeR kIdS.

What’s actually cringey is armchair psychiatrists calling us fakers because we don’t fit into the mold they have in their minds.

We’re not factory produced and these conditions materialize differently in different people. We are also allowed to coin our own terms, and make communities where we share amongst ourselves for inclusivity, and create educational content for people questioning themselves and neurotypicals.

No one’s saying that fakers don’t exist. They do. It’s a fact. However, it’s not the “majority” that you claim.

Many DID/OSDD alters develop in childhood; they’re what the child saw as protection or comfort etc. It doesn’t matter that it’s “a cringe popular personality/character.”

Also, self diagnosis is a very good step. That “maybe I have such and such condition based on this and this,” gives them a reason to find a doctor—given they are able to. And if they’re not lucky enough to have the resources, why should we gatekeep it exclusively to those fortunate enough to get a professional diagnosis. Why shouldn’t we invited people questioning themselves into a community free of masking and the following burn out of education and tips.

And please don’t brush this off as “satirical” or as “joke” as your bio claims all you say to be.>

PERSON 1: <DID is actually pretty rare and most of it happens in adult hood [sic] not child hood [sic] I don't think.>

P1: <And most of the people on there are actualy [sic] faking it>

ME @ P1 COMMENT 1: <How do you know? Do you have a certification? Have you tested these individuals?>

ME @ P1 COMMENT 2: <“Young children’s brains are less mature than adults, and they are more susceptible to develop a dissociative personality because their sense of self and their personality are not very cohesive — they are still developing. They are less able than adults to cope with and integrate traumatic experiences. So the younger a person is when they experience trauma, the more likely they are to develop a dissociative disorder….

“But dissociative identity disorder seems to develop only as a result of childhood trauma. Often the symptoms of a dissociative disorder do not become apparent until adulthood, but it is generally felt that trauma which occurs solely in adulthood will not result in a dissociative disorder. “

https://www.carolynspring.com/blog/what-causes-dissociative-identity-disorder/

As kindly as possible, please educate yourself properly before speaking on such topics.

—ND Community>

P2 @ P1: <no , it doesn't fully form and become distinct until adulthood but the trauma to form the system must happen within childhood before the personality "forms into one">

P1 @ P2: <ah okay that makes more since>

P3: <No these I’m not diagnosed self diagnosed people using tags that belong to communities and people who are diagnosed isn’t fair And you have no idea how many times I see people say oh I have borderline personality disorder because I fit a couple of the things which are also the symptoms of other disorders so no self diagnosis is not always good you need to go see a doctor that’s it.>

P3, HIGHLIGHTED REPLY: <And their are hella ppl faking did osdd bpd and bipolar all over tiktok and spreading mis information [sic]>

I don’t know why looking at an actual, valid source is so difficult or how P1 was so, so easily swayed by P2 after P1 commented on my initial explanation, to which all these were a response to. That’ll forever be outside my ken.

Also, every single one of these people’s comments--who were supporting the misinformation--received likes on their comments. I’m no Youtube sage but I do know what support, however small, looks like.

Evidently, I am only screaming at the dust when I ask: According to who? What authority do you have on it? What makes you, oh, so sure? Even when you are diagnosed with such and such disorder, how can you know for certain that the kid over there is faking when these manifest differently in different people?

Good rule for life: if you don’t know what you’re talking about, then, disrespectfully, shut the fuck up! There really is only so long we can be nice about this and as you can see, my fuse is rapidly shortening. And if you read this and think any version of: “oh, you’re being too emotional to actually speak on this, I don’t believe you.” Then listen up. We DON’T owe you jack shit--neither do BIPOC for that matter. The mentally ill, chronically ill, disabled, BIPOC and otherwise oppressed minorities do. Not. Owe. You. Sunshine and rainbows. When. Going. Out of our way. To Educate. Your. Belligerent. Ass. And you getting “offended” at being told off when being overwhelmingly offensive, really shines a negative light on you, now doesn’t it.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

CW: angry

So I suppose I just “caught” anxiety and depression from this recently created app after exhibiting traits for years prior. I suppose that an 80 year old gentleman who was finally diagnosed as being on the autism spectrum is just trying to “be in with the kids” after a lifetime of masking and exhibiting some sort of signs. I suppose those soldiers after World War I who were “shell shocked” were really just ahead of the times then. I suppose the “thousand yard stare” of the 20th Century was just hubhub and excuses of “weak men.” I suppose the “nostalgia” and “irritable heart” of the surviving soldiers of the US Civil War were getting their just desserts in the recommended public reprimandations as treatment. I suppose the fae changeling children who had eyes that always seemed to know more than they should were just that: changeling children put there to feed upon the parents like a cuckoo hiding eggs. I suppose that that old man from family stories was really just possessed by a demon and that’s why he “spoke in tongues” and went around biting people.

Right?

Right?!

I have to laugh in order not to cry, although I doubt it’ll work.

Incorrect, to everything. Disabled and Mental Illness Tiktok should NOT be treated like Anorexia Tumblr. You cannot “catch” ADHD or Autism or PTSD or Chronic Pain like you can an eating disorder (which are very valid disorders). These people on this side of Tiktok are creating this wonderful place for people to finally, finally understand what was “wrong” with them this entire time. A place to connect your “maybe I’m just quirky” symptoms to a real thing and have access to a supportive community. A place to go “oh, that’s why I do what I do” without needing to talk to a doctor or spend so much money on multiple visits. A place to be in the privacy of your room to figure yourself out without someone going, “always with the excuses, put that damn phone away and clean the kitchen like I’ve told you ten times!”

No one can see this informative material and go, “hey, mom, look, I’ve been sitting on the couch for three hours, guess I have ADHD,” or, “I just broke up with my girlfriend and threw her PS4 out the window, guess I’m manic and quirky, lol.”

They can, however, say, “hey, bestfriend, I think I might have autism… like, I never know what to say and try to think or map out conversations before hand as, like, prep…” and “uh, auntie, I think I might have PTSD… a lot of the symptoms--I have nightmares about that night and can’t seem to stop thinking about it. Could I get some help?”

Which is WONDERFUL.

Also, a part of this community supports self diagnosis. Which is wonderful too!

In this community, children and people who otherwise don’t have such access to such resources could start getting help they need EARLY; they don’t need to rely on someone in their life knowing any of this and dragging them into treatment. They can start helping themselves with the shared helpful tips, and tell people in their life (if it’s safe for them to do so) that they likely suffer with this and need this and that as help, or can say that they do better with such and such and hopefully get that help/accommodations.

And the best part?

It’s made BY people who are affected, sharing their own stories and tips and support. Which is help from people experiencing these things and able to both empathize and sympathize, and which is available to those who don’t have access to therapy/medical help; help without the price tag fit with a BOGO deal of a supportive and inclusive community.

So, you who insulted this community and members thereof, shut up.

Fullstop.

Just shut up.

Don’t project onto us your ignorance and unwillingness to learn something--to learn something from children. We know ourselves better than you, David. And these conditions weren’t just birthed with the 21st Century; the 21st Century has just made it harder for our diagnoses or symptoms to go unnoticed. Take, for example, an autistic person: they could have a ball in the 16th Century just chilling in a rural area, spinning yarn for hours on end without flashing lights or over stimulating noises to trigger anything.

If you have individuals in your life who live with any of these conditions, I pity them that they need to deal with you.

If you care at all about them and aren’t just going to throw some righteous angry fit about being “disrespected,” I strongly encourage you to go educate yourself. Many of these people would love to be invited to educate those around them on this and how/what could be done to help them.

Of course now, I’ve profiled anyone who would say that these people are just trying to be Pick-Me’s are usually older people, and in my experience, they are. Just because you’re over the typical age of college graduation or have adult children of your own, doesn’t mean you don’t need to learn anything else or “know everything”--which is actually something I’ve also seen with this generation for how much they allege that we, younger generations, claim to “know everything because we’re young” and belittle us, but I digress.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

CW: angry

If I am faking for attention, as you claim, why the FUCK would I when it’s brought me such BAD attention?

Lay-people, please just shut the fuck up.

Legitimately.

When you take and look at someone who’s disabled or neurodivergent and claim that they’re faking because of your very limited knowledge or limited experience, all you’re doing is hurting us. And that includes people in the medical field; I wouldn’t take shit from a foot doctor about how “I don’t actually” have Generalized Anxiety Disorder.

Sure, maybe that one person is faking, but that begs the question of why that 10% should then be used to justify discrediting and persecuting the rest of us.

What’s the point in that?

Why make the stigma worse?

Where’s the justice in that?

There isn’t, only hurt.

Me? I’d prefer to be given the benefit of the doubt rather than immediately made a pariah and harassed. I’d also prefer to side with a liar rather than jumping on some bully bandwagon. Any day.

Let us share our stories and help others like us.

Let us connect with each other.

Let us help new members of our community learning and coming to self-realizations.

You have your space, leave our’s be.

By persecuting us with “mental illness cringe” and “DID fakers,” all you’re doing is harming us. You’re pushing us back into the ND/chronically ill closet; destroying what little progress we’d made for acceptance. Now, you’re forcing us again to mask, to burn ourselves out with faking we’re “normal” because we can’t win your Catch 22 Neurodivergent Faker Test. If we act our true selves that fit the special little book’s diagnosis, we’re obviously faking. If we don’t perfectly match up to it, then we’re “trying too hard to be special.”

Let me reiterate a few things:

Our diagnoses are NOT up for debate. Especially against people who have no actual training or experience.

What’s actually “cringe” is your pretending to know anything about us and your desperation to be right.

I and many others would rather that one faker be treated as if they do have such and such disorder or other non-“normal” issue and be treated like an actual person, than see us all treated like this. It’s disgusting.

By the way, little secret, there’s no special brownie points about this kind of stuff either. If you’re attacking people of the group you claim to be an ally of or defend… YOU’RE NOT FUCKING DOING IT RIGHT.

You have a chance to fix the way you treat your fellow humans, please, take it.

If you’ve been on the receiving end of this, I’m so sorry, you’ve been failed. But just know you’re never alone.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

I’ve seen disabled people really accept themselves and their circumstances, and say “yes, I am this way, and it may be disadvantageous, but I’m grateful for what it’s shown me and the lessons it’s taught!” And good for them! I love and wish them the best! The following, however, will be a sort of “opposite” take on that—reminder: that I am NOT dissing these people nor am I saying that no one should feel this way, these are just my own personal thoughts on it.

I am not grateful for my issues and the circumstances they’ve put me in. I’ve met great people, sure, but that’s not exactly the best bandaid for a cannonball wound.

I accept that I am disabled and that I will suffer with these problems for, most likely, the rest of my life. I accept the above even as I push against those restraints and try to find better ways of living, if only just by a little. I accept it, however, I do not appreciate it. I don’t conflate my acceptance of reality with gratitude. Note: I’m not alleging that the said individuals are doing this; it’s just a distinction I am making within myself and spitting out into the aether of the internet.

My health has brought me down—no, it’s yanked me down. Hard. It hurts to think about what I’ve missed or what I could have done differently without my afflictions. Take for example my academic career, which unfortunately still lies at a standstill, doing my best and pushing myself past my limits, I still did fairly well… but how much better could I have done just without the growing migraine?

Could I have competed with the Valedictorian of my graduating class, and placed higher?

Could I have done better on my SAT test and had more options available to me?

Could I have gotten more general classes out of the way in PSEO?...

I could have.

I. COULD. HAVE.

Fuck! It hurts to see what I’ve lost, and now I’m even more conscious of the slightest actions. I… could… have….

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

It’s going around about how refusing to date or be with a disabled person (mentally or physically) is shallow and ableist.

And, well, we all have our own thoughts on this.

If you’d like my two-cents as a disabled person in both respects, read on. Mind you, these are based on my personal experiences and not applicable for the entire community!

There’s easily an absolute plethora of situations that could be argued either way.

To me, I wouldn’t be offended if someone didn’t want to be with me because they somehow caught word of what I had—which was probably outside of my consent so shame on the informer since I have a right to the protection of my health information, and decided they didn’t wanna deal with all that. Well, ok.... I mean if they don’t have the time of day for me then why should I waste time thinking about them? Or “pursuing” them (no means no, y’all)?

Another example: I get on really well with someone new. Let’s say they’re very active, which I obviously can’t be, and doing all these activities takes up a lot of their time and are also seen as bonding/couple things by them. I’d be sad to have to let the prospect go but there’s a possibility that we could still be friends.

And another: let’s say I choose not to be in a relationship with someone who has conditions such that I can’t handle. Firstly, I wouldn’t just walk out or ghost them and assume they got the message because besides being cruel, that’s absolutely ludicrous. I’d sit them down and communicate my fears or issues or concerns. Maybe it could be resolved. Let’s say, for the sake of argument, that it can’t, that it’s beyond the control of either of us. Then I’d see it as beneficial for the both of us to separate as we’d just feed into each other’s negativity if we stayed together.

Let’s say person A is in a happy relationship with person B. Something terrible happens and A is terribly wounded/disabled. Of course, I think most, if putting themselves in the position of A, would dearly want B to stay, but what if it had an overly negative effect on B? This isn’t to make a sob story for B, what I’m doing is asking if it would really be a good idea for someone who, let’s say, has turned very negative around A (could be a number of things like depression or the financial or emotional or physical toll, etc.)? No. It could escalate into abuse—I’m not accusing every caretaker of this, just in such a situation. Especially if, say B, was already not physically abled--I’ve had catastrophizing thoughts about being hurled into a sole caretaker role and I know I wouldn’t be able to do it, especially factoring in the size of the person who I needed to care for. It’s not a matter of caring either, really, in this situation; I’m just literally unable and I don’t see how such a relationship could have a high probability of working out with the sheer amount of stress put on it. Again, just my thoughts, and of course there’s relationships that could! My word isn’t meant to be law on this.

I’m single and I don’t want to be, I admit that, however, I don’t want someone to date me to “prove” they’re not this, that or the other thing. Or to pity date me. Or, even worse, because I’ve guilted them into it. It’s gross. It all is, the latter being the most. I want a partner to be with me because they legitimately want to of their volition, of their own free choice. And I hope that I and any future partner communicate enough for the above not to happen. I hope the same for my disabled and/or neurodiverse kin. I hope none of the allies or even antis get guilted or made to feel obligated to do so either. If you have, I’m sorry you’ve been failed, and I hope you don’t have to go through that again. If you think that that’s the only way you “can get some” or have a partner, I hope that changes and I hope no one falls for you like that.

One last thing…communicate, people! Communicate. Communicate. Communicate.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

The notion of “here, watch porn of this and then you’ll accept it,” is certainly making its way around the internet, and... I find it disgusting, to be quite honest.

And it’s so hard to put into words just how wrong this is to me.

How should someone watching “migraine porn” or “back deformity porn” make them accept me more? It just makes me and my health conditions into a fetish; makes people see me as a means to their climaxical end, not as another living, breathing, autonomous human being.

I’m not saying this to kink-shame, I’m saying this for it to be recognised that disabled people exist and we don’t exist for the purpose of you “rubbing one out,” then be utterly ignored by you the rest of the time.

Also, dating someone for brownie points or to show that you’re “accepting” doesn’t sit well with me either. I don’t want a pity relationship and I don’t want a partner that uses me as a “see? I care for disabled (neudivergent) people” figurehead.

Accepting and seeing us as autonomous humans and “tolerating” our existence is literally the bare minimum.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

By now, I’m sure many have seen a version of the meme:

“Can a depressed person do this?” The person then putting a glass in the sink or dishwasher.

Sometimes, someone else responds with, “nah, they’re cured. You’re fine.”

Um... excuse me?

Depression isn’t a competition (nor is any mental illness) of having 36 cups in your room or “depression ants.” It has a spectrum. Besides that, medication doesn’t undo the illness, it helps to manage it—to my own knowledge, again, I’m no physician, just someone affected and in spheres with others who are affected. Also, we all have different circumstances. For example, I’m depressed and exhausted from pain but I still do the dishes. The most I have is two water bottles and glass which are currently being used and maybe a soda can that I haven’t yet remembered to take to the kitchen for recycling. Again, not flexing, just the reality of the depression spectrum.

But then what about busy parents as well? Or people who can’t afford to “fall behind” on hygiene matters like that.

Also, one has to remember prior to passing judgment on others--or even themselves since we are truly our worst critic--there are good days and bad. Someone may be able to take care of their dishes one day then end up piling 36 cups and empty instant ramen pacckets three days later.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

I’ve never been extremely eloquent or quick thinking, but I valued what I did have, especially for academics. Where once I was an A-B student, top ten of my prep high school class and graduating in a collegiate honors society, I’m hanging by a thread in my college studies, looking up synonyms of words I can’t remember in order to find that word, getting embarrassed from tripping over myself in conversation because I can’t remember a word or somehow say something unrelated. and bothering my language degree holding mother about anything and everything written to make sure it makes sense. Reading is mentally exhausting now whereas I used to read until my eyes closed on their own.

Concentration is null.

I haven’t even been able to catch up on any of my other special interests, “since now I have time,” either.

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

My friends and those who may still need to get the point, pain is relative. What hurts one person may not hurt another and vice versa. BUT they are still in pain and that should be respected; not this “I suffer with [insert condition] and I’m 90, man up,” or “oh, it can’t hurt that much,” or “when I was your age, I broke my ankle while hayin’ and I still finished, stop being lazy,” etc, etc, etc. That also goes for mental illnesses. Why shame us? What’s the point? I understand that the older generations may have been raised with a “toughen up” attitude, but that no longer flies; these are real people with real conditions who need help or an understanding of their limits.

I was mortified to learn that my family thought I was just lying and being lazy when I backed off of doing all these various things because I couldn’t identify what was wrong with me, and what and why I was feeling what I did. Still, even with a way to explain it, some still think I’m just lazy and/or lying.

The impact of not being believed or being brushed off by people close to you hurts on a level I can’t explain, and I’m sorry to anyone else who has gone through this; you deserve better.

4/5/21

To those suffering: I see you; I support you; I love you.

On bad days, I have this itch. Though, it’s not so much an itch as this irrational need.

I hardly want to be me on a good day, but when that horrible feeling sets in, it’s game over.

When I can’t “sleep the pain away” or borderline distract myself, I want to literally claw myself out of my own skin. I can’t stand feeling myself any longer.

I don’t want.

I just don’t want.

I can’t stand.

I just want the feeling to end.

To be gone.

To leave me alone.

I have this desperate need to take my spine and wring it out and stretch it on the rack until that mediaeval device breaks.

To tear. To bleed. To leave it all behind and go away.

3-15-21

To those suffering: I see you; I support you; I love you.

My back is bent

My mind is spent

I feel like I’m withering

I can’t flip a tractor tire

Or run a lap

The tangible weights, I can’t lift

But you’d never know the insurmountable

Weight I hold nevertheless

I bend under it, yes

But I have not broken

I am strong

There’s no other description

To continue with what I’ve been dealt

3/10/21

To those suffering: I see you; I support you; I love you.

[This is subject to change/be edited.]

Your vague understanding; your I-can’t-empathize-with-your-condition-but-I-respect-your-needs/accommodations; your this-is-different-than-how-I-was-raised/told growing up-but-I-accept-and-love-you-as-you-are; your that-need/accomodation-doesn’t-align-with-my-unprofessional-knowledge-but-I’ll-respect-it

Have some pain-wise decorum. If someone is in a lot of pain and wants that fact acknowledged, fine, go ahead, that’s ok. But what’s not okay is for that person to continuously complain about their pain when they are knowingly around others who are also in a lot of pain, and continue to whine. Especially, if they’re asking those others to do a number of things for them.

We get it, Shannon, arthritis sucks and it’s a horrible thing to have to deal with, but please, please, just shut up already.

Don’t get irritated with us. Not doing something we said “we’re working on” does not translate to us being lazy. We’re trying. We really are. We just can’t. And I promise you that it irritates us a hell of a lot more than you. And we’re beating ourselves up over it.

“Everyone’s a little ___.” NO. People get nervous and fidget and have pain. That’s normal. That’s not disordered or a chronic illness. Again, stubbed toe to shattered leg. Ex: “everyone’s a little OCD.”

If you say something that to you is unimportant or no big deal but someone comes and says that it bothered or triggered them in some way, don’t try to defend it by saying that ‘’well, it doesn’t mean anything.” We get it. We understand that you didn’t mean it that way. However, that does not mean you can disrespect us by continuing to say the thing or saying how we shouldn’t feel whatever way to it. Just, stop it. Don’t disregard our reaction to it.

Don’t tell us what we can and can’t do, or should and shouldn’t do based upon your lack of understanding of a condition. Ex: “oh, don’t park there, you can walk!” Or, “if you were really autistic, you’d fidget more.”

Do not debate someone’s diagnoses with them. If you’re trynna flex whatever knowledge you have, do it somewhere else where it doesn’t involve belittling someone’s very real health condition.

If you do have experience in whatever field the condition pertains to and think something may be amiss, speak to them; tell them you’re concerned and it doesn’t match what you know and encourage them to get a second opinion kindly.

“You don’t look it.” —> No.

“Oh, you have this problem? [insert issue] Well, welcome to the real world.”

Shut.... UP KEN! How bloody self righteous and elevated does a person have to be to completely dismiss another’s experience and insert their own which they know the other person both hasn’t experienced or is able to have gone through just to feel better about themselves? If anything, that person is the immature one in this situation. Grow up. Respect other people’s experiences. There’s no special brownie points for you having gone through a foreclosure, and the other person having crippling anxiety to the point that they broke down even hearing about a lease.

Don’t shame people for doing things. Ex: “oh, look who finally came out of her den,” or “look who finally decided to join us for dinner,” or “look whose awake.” Don’t shame them for doing positive things; it shuts them down for doing either.

“Just don’t be ___.” —> No.

“Just relax.” —> No.

Do not raise “what if’s” with people who are anxious to begin with.

You’re not owed an explanation. For example, you’re out with someone and they do something strange; something you wouldn’t consider “normal.” Maybe it makes you uncomfortable. Maybe it just confuses you. That’s ok! You can ask them POLITELY about it. Maybe the person is comfortable and willing to explain to you. Maybe they’re not. Both is ok! If they’re willing to explain, be kind and don’t make a face. It’s probably a tick or a stim of some kind that they HAVE NO CONTROL OF. If they’re not, that’s ok! Don’t press them or alienate them for their tick or stim, they probably have no control over it. Later on, you could even educate yourself! And if you meet up with that person again and they do that same thing, they’re probably going to be more self conscious of it than usual, and if you say “hey, I know that’s what you do, I did some research myself and educated myself, and I understand that while I don’t necessarily know your diagnosis —or claim to diagnose you—I know that’s not something you can control and that’s ok.” It would make a world of difference to them.

It is not a compliment when others like us are insulted. Ex “Your stims aren’t as distracting/annoying/obnoxious as Jonathon’s, I’d never go anywhere with them!”

If someone is taking the time to inform you about something especially able-istic behavior or behavior they, for whatever reason, can’t tolerate or that triggers them, don’t see it as a personal attack! That not only puts the focus of the issue on you and paints you as a victim but also undermines the issue and communicates to the person that you’re set in your ways and there’s no use in trying to talk to you about anything whatsoever.

Ex: “it really upsets me when you keep saying that phrase.”

“I never said that! Don’t you know I love you?! Come on now, you’re smart.”

“No one will love you until you love yourself.” —> No!

Explanation =/= excuse. Stop it.

Don’t food shame anyone! Maybe that pasta is the only thing they eat all day. Maybe they’re having severe cravings that won’t go away (which can be contributed to a number of things).

Depression =/= weak or weak minded. It’s a literal illness.

“All women go through that/ that’s just part of being a woman [or afab/female type body].” No. That’s not only belittling and dismissing their issues but also sending them the message that they’re wrong which is not ok—especially if you’re a healthcare worker.

NONE of these conditions mean lesser intelligence.

My friends, if you have anything to add, don’t hesitate to message me as always!

12/20

To those suffering: I see you; I support you; I love you.

I’ve seen a trick to convince yourself to eat is to ask yourself if you’d let a middle schooler not eat or sleep or drink water, etc like you’re currently doing. 

The answer is no.

When I saw that, I immediately thought it was a good idea; I’d treat a middle schooler a hell of a lot better than I treat myself but then….

I thought more on it and realized that I would be shaming myself into doing those things.

I mentioned it to my therapist today and she understood, it’s common knowledge I shame myself for practically anything and everything—a habit I’m painstakingly working to correct.

She agreed that I need to find way to not shame myself.

Of course that’s obvious.

Then I mentioned, I forgot in the exact context, that I’ve been checking up on my friends and knowing that they also have troubles, though for different reasons, asking if they’ve drank water or eaten yet (remotely, of course).

At about the same time, I and my therapist voiced the obvious conclusion that I also treat my friends a hell of a lot better than myself.

So now, an exhaustion nap and several hours later, I’ve thought if I could use that as my trick; to treat myself like a friend….

But I don’t see myself as a friend.

I don’t like myself.

If I met myself, I probably wouldn’t choose me to be friends with.

So how could I get myself to be nicer to myself like I am with my friends?

Well, despite probably many of you thinking “just be nice” or “love yourself,” it’s not that easy.

I am The Little Engine That Can’t, that’s still stuck at the base.

And my engine is overheating.

And the engineer is cussing up a storm because nothing’s wrong but it still won’t work

There’s dents in the rails where I’m stalled, unable to move forward but fighting with everything not to go backward.

Self love isn’t as easy as saying sweet nothings to your reflection or laying down with a stone carved into a wand, meditating.

It’s ugly.

It is.

And it’s fucking hard as hell.

I’ve come a long way with self love in the last few years but that doesn’t mean my major insecurities have been erased, or that what I’m going through has no impact.

So I’ve been trying to see myself more as human than this goal orientated, defective machine.

2-22-21

To those suffering: I see you; I support you; I love you.

We’ve all heard “communication is key” for romantic relationships, but it’s also so, so important in other relationships. But it’s not easy and I understand if you’re scoffing and telling me I’m preaching to the choir. 

I know it’s scary and intimidating. 

It’s so, so scary. 

But let me tell you is it so worth it. 

It’s such a relief when you have the bravery to be vulnerable and to have the person you’re speaking to accept that and respect that and understand. 

A while ago, when I went into the clinic to see yet another therapist, I was in a lot of pain and now in a place that’s over lit and stressful, and I just was not having a good time whatsoever. 

As I was answering their questions, I could feel the tension. 

Oh my gad it was stressful. 

So then I said something to the extent of ‘I’m sorry, I’m in a lot of pain right now, I’m not trying to be mean, I’m sorry.’

You know what happened?

The atmosphere cleared immediately, and we had a more open and accepting conversation after that. 

I’ve been trying to do the equivalent in all my other relations when needed. 

And if you’re reading this because you have someone close to you suffering, it’s ok to engage that conversation yourself! 

Sometimes it’s more helpful for us for you to start that conversation because we’re afraid to be the ones to talk first. 

Also, please, please, please be respectful during these conversations; you may have an understanding of an issue of theirs but that doesn’t mean you know what they need or what they’re going through. 

I’ve tried to make it clear with my friends/within my friend groups that if there’s a miscommunication, to say so and I’d be happy to sit and clear it up; less drama and more understanding that way. 

Likewise, I’ve tried to also tell them that some things I say may fall flat because even though I may be trying to join in with some jokes or general humor, I can’t easily just be jovial. It’s hard enough for me to mask, which is to say to hide something and pretend to be normal to fit in—other people with neurodivergent issues also do this, on any given day let alone if I’m feeling worse at that time. 

Or….

The person and less fortunately, the provider, could be apathetic and project anything and everything onto you. This is why I’m afraid to see new providers. I hope, of course, that we’ll have some sort of chemistry and that they’ll be sympathetic and understanding, but it’s unfortunately not the norm. Especially for so many others. 

2-17-21

To those suffering: I see you; I support you; I love you.