Being Referred To As A "new System Member" Is Funny Because No. Not Really. I've Been Here Since Before

dear fellow career driven spoonie,

you’re not a failure, you’re sick.

you were putting just as much effort forward before you were sick as you are now, you just have less energy to use so the results aren’t as exciting. it’s not complacency if you’re putting forward an effort.

it’s normal for your work life to suffer when your personal life does. you’re not a robot, you’re still a person, it’s unrealistic of you to expect yourself to be able to compartmentalize your symptoms at work. your body doesn’t care where you are or who’s time you’re on and it’s okay.

if all you can do is maintain your responsibilities, that is enough. you are probably not going to get fired if all you’re doing is what’s on your job description. it’s okay that you can’t put anything extra forward to grow. you’re growing in other ways right now.

even if you lose your job, you’re still not a failure. you’re not defined by the fruits of your labor, but by the substance of your heart and you are still that same career driven person who worked so hard in that position in the first place.

the reason why you’re successful isn’t because of what you’ve done, but who you are. take pride in your talent, motivation, knowledge, intelligence, and grit. that’s where your value lies.

"All autistics have low empathy" - This statement is wrong.

"Autistics having low empathy is a MYTH, we actually have HIGH empathy!" - This statement is ALSO wrong.

Autistics can have low empathy, they can have high empathy, they can have learned empathy. The myth would be that all autistics only experience one end of the empathy spectrum.

In spreading around misinformation that autistics actually have high empathy, you are disregarding the autistics who do have low empathy. And vice versa.

I think the most fucked up thing about intrusive thoughts is it's really difficult to discuss them without discussing their content, because without a discussion of their content it's impossible to get across just how distressing and debilitating they are. "Oh, you have unpleasant thoughts sometimes? Yeah we all have that, I guess."

But if you discuss their content there's this huge risk of people just pulling away in disgust. "Oh god, you have THOSE sorts of thoughts? They should lock freaks like you the fuck up!" As if they think people act on every single thought they have.

narcissism/NPD recovery resources, because there’s like nothing good out there

Books and things to read:

Borderline, Narcissistic, and Schizoid Adaptations by Dr. Elinor Greenburg - Aimed at providers but apparently super great for self-help too

How Do You Develop Whole Object Relations as an Adult? by Dr. Elinor Greenburg - Tips on how to stop seeing yourself and other people as only either all-good or all-bad

10 Stages in the Treatment of Narcissistic Disorders by Dr. Elinor Greenburg - Goes through the stages of treating NPD

Rethinking Narcissism by Dr. Craig Malkin - A book about promoting healthy narcissism instead of unhealthy narcissism

Antisocial, Borderline, Narcissistic and Histrionic Workbook: Treatment Strategies for Cluster B Personality Disorders by Dr. Daniel Fox - what it says on the tin. May be best done guided by a therapist

Shame in patients with narcissistic personality disorder PDF - What it says on the tin.

Narcissus and the Daffodils - an essay about NPD by someone with NPD. Probably the best description I’ve ever seen

Things to watch and listen to:

Recovery FOR the Narcissist by Dr. Eric Perry - A compassionate podcast to provide insight, support, and encouragement to anyone who exhibits narcissistic tendencies. Very in-depth

Early Morning Barking - A YouTube channel by someone with BPD and NPD about coping with and educating people on BPD and NPD. He also has a Recovery from NPD by Dr. Todd Grande - A video about this provider’s experience with helping people recover from NPD

Misc:

Narcissism Self Help Therapy website - A daily program for people with NPD (may have some triggering aspects in Part 2 of the program)

NPD Safe carrd resources - More resources for NPD (I have not gone through all of these so I don’t know how good they are)

NPD Recovery Comics by The Ego System - A bunch of fantastic comics about recovering from NPD.

Trauma is the response, not the event.

And when we talk about how DID is formed from severe childhood trauma, what is not meant is that what happened to you needs to have been objectively "severe". If you have severe trauma responses (such as DID), then you have severe trauma.

Your trauma is enough regardless of what happened to you.

Trauma is incredibly subjective; what was incredibly traumatizing for one person may not be for another. How we become traumatized is related to a complex web of factors. No case of traumatization will look the exact same.

Trauma is not a competition. What matters is that it affects you. It's enough.

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

Writing Accessibility PSA

Please avoid using long strings of characters as line breaks in your writing - these are not screen reader/TTS friendly!

Every ‘°’ will be read as ‘degree’ - can you imagine how long it takes to read out a string of 25? Let alone more complicated combinations of characters (eg. imagine listening to TTS read out ~*~ |°| ~*~ multiple times per line break)?

A good rule of thumb is to stick with short, 2-3 character line breaks (eg. I don’t find — or *** too egregious to listen to). Your readers can tell there’s been a scene change whether you use two or twenty em-dashes, but if you use twenty, some of us might have to listen for 30 seconds to read the next scene. If you’re more concerned about aesthetics, you can insert an image of your aesthetically pleasing line break with alt text simply reading ‘line break’ for accessibility.

Don’t feel bad if this is something you’ve never thought about before - now you know better and can make your writing more accessible moving forward!

I would like to invite any other screenreader users to add their own thoughts or preferences to this post. We’re not a monolith and there’s a variety to how different softwares interact with repeating character strings and images with alt text, so there’s bound to be some conflicting opinions on what I’ve suggested above. Let’s try to make the stories we share accessible for everyone :]

There's only one real way to categorise disorders and it's when you google it and the first results fit into one or more of the following categories:

1. "Is your child-" "Does your child-" "How to cope with the burden of being a parent for-"

2. "How to get better: Step One: have a lot of money!" "How to get better: Step One: simply stop having it!"

3. "10 Ways To Spot Sickopaths With This Disorder So You Can Protect Yourself" "The Bad People Disease -by Dr. Eugene X."

hey, disabled person! do you feel tired all the time? do you feel like you’re working twice as hard as abled people for half the outcome? do you take longer to do every single little thing than an abled person would see as reasonable? well. I would like to introduce you to the concept of crip labour (I first came across this in Smilges, 2023 but I cannot verify whether they came up with the term)

crip labour is a term to describe all the extra work disabled people do on a day-to-day basis. it’s also a form of labour that is invisible to abled people, because they just don’t have to think about most of it. it includes:

the extra labour required to get ready to leave the house in the morning (e.g. the extra steps involved in getting dressed or having a shower)

the social labour required in order to communicate your needs to abled people

the labour involved in having to plan ahead (e.g. knowing where accessible toilets are, knowing where ramp access is, knowing which venues are safe for you to be in)

the administrative labour involved in gaining access to particular institutions (e.g. applying for disability welfare, applying for education access plans, etc)

having a term to describe all the labour involved in keeping yourself alive and happy helps to make that labour more visible. it gives us a way to point out that we are doing more and with less capacity, and it helps to explain why so many of us are so exhausted all the goddamn time

so I hope this is a helpful term for people to bring into their lives!

Medical condition: gets worse without sleep

Medical condition: makes it harder to sleep