Latest Posts by dissociatedbi - Page 3

people vaguely saying 'the horrors' as shorthand for 'life problems, don't worry about it' in conversations where the problems are not going to be delved into has got to be one of my favorite new Ways Of Speaking that has emerged. like it's polite and vague and succinct enough for impersonal conversation but also extremely honest. it's very funny. The Horrors. we all know of them.

i can get to my desk IF someone moves a chair out of the way is not accessibility

i can get in the building IF i’m having a really good day and can open the door myself is not accessibility

i can get in the building IF i go through loopholes to be allowed to use the accessible entrance is not accessibility

i can get to one desk BUT i don’t have a choice in where i sit and everyone else does is not accessibility

there is an accessible entrance BUT it is farther away and more inconveniently placed than any inaccessible entrance is not accessibility

accessibility should not have conditions. all of these are still good, compared to absolutely no access. but disabled people should not have to settle for “just barely good enough”

Nothing happened, I'm just disabled.

And if something did happen, it's not your business.

You are not owed an explanation for my disability.

My cane is not an open door for interrogation.

Let me exist.

It's a really weird moment, going to a 2nd opinion doctor at a big university hospital and being told "your doctor is right, there's nothing else we can do for you besides remove your colon and reconstruct your pelvic floor surgically."

Moment of silence for my asshole. RIP

I'm getting back to a level of chronically ill where I'm like "wow I am actually very seriously sick all the time and not able to manage and facing the possibility of an incredibly drastic surgery" and I really really don't like it. I'm just over here hurtling towards the point of no return, preparing to have a huge organ removed from my body but having to suffer with it for the next 5 months while I wait for referrals, and I'm just tired and scared and sick.

Something I haven't seen spoken about a lot is the psychological impact of being chronically ill and experiencing horrific symptoms, and knowing that literally no one can help you.

I could call a doctor, but I already know what's wrong. There's literally nothing they can do for me. And I can't afford to go just for reassurance.

I'm just in a flare and sometimes it's Like This. And you just have to swallow symptoms that live in the nightmares of well people, because you can't just have an emotional breakdown every time you're in a flare.

So I'm in horrible pain and distress, and I can't call for help, because no one can help me, and I have to act like it's fine, so I don't worry other people who get Very Upset that I can't just Fix It

And there's just a deep psychological burden in that, that I don't think well and able bodied people ever really think about.

"disability only exists because the world isnt accessible" idk how to tell you this but chronic pain still hurts

Do not talk about your abusive family on tiktok. Do not talk about your closeted identity on tiktok. Do not talk about your traumas and mental illnesses on tiktok. Do not talk about your plans to move out from your abusive household on tiktok. Do not talk about the ways you disagree with your bigoted family on tiktok.

Do not attach your face or voice to anything on tiktok that you do not want your family members, neighbors, coworkers, or classmates to see. Be smart and stay safe.

When you’ve been severely ill throughout your early adulthood, it means coming up against this again and again:

OTHER PERSON My 20s were wild – copious amounts of alcohol, partying, having sex with multiple people… SEVERELY ILL PERSON Yeah, mine too – copious amounts of herbal tea, being too exhausted to dance or have sex…

OTHER PERSON (a brief what-the-fuck expression passes over their face before they continue as before) Uh huh, so like travelling, starting new jobs, moving in with partners SEVERELY ILL PERSON Emergency trips to hospital, being too ill to work or go on dates OTHER PERSON (looks momentarily confused, then carries on as if SEVERELY ILL PERSON has not spoken) Going outside every day, holidays with friends, being carefree SEVERELY ILL PERSON Being bedbound/sofabound/housebound and stuck indoors, extreme social isolation, the crushing enormity of chronic illness grief and medical trauma OTHER PERSON ?! OTHER PERSON … OTHER PERSON (as before: enthusiastically begins a story about their dating/romantic/sex life as if SEVERELY ILL PERSON has not said anything at all)

Here's something that's been mindfucking me for the past two damn weeks. So not only do I need surgery to have my colon and rectum removed & to get an ileostomy, but I also have to see a pelvic floor reconstruction surgeon.

Because with my Ehlers Danlos Syndrome, I'm high risk for prolapses, and guess what being sex trafficked for the majority of your childhood does to your developing pelvic floor? Spoiler: nothing good.

So because of this blessed combination of genetics and abuse, I have multi-pelvic-organ prolapse, and no ability to withstand pelvic floor therapy. I tried. I just literally cannot fucking do it. And there's the fact that pelvic floor therapy might not even work for the severity of my issues anyway. Ergo, surgery.

Now I get to have two surgeons argue over the best way to butcher my body into something livable and I can't even explain how fucking tired I am. I don't even know what to feel about it beyond exhausted.

And then I have friends who are also going through things and I want to be supportive & I try to be, but I just can't do all the things I want to do because I'm spending half my fucking day in a dissociative fog because I just don't know how to process any of this.

I'm really fucking tired of watching my husband suffer so much because I'm so sick. I feel like people don't talk enough about the trauma spouses go through, watching the person they love most in the world continue to deteriorate constantly.

Had a doctor appointment today where I found out officially (I suspected this would happen for a while so it's not exactly new information) that I'm going to most likely need a proctocolectomy and an ileostomy. Which basically means they're going to chop out my colon, sew by butthole shut, and give me a stoma on my abdomen where I shit into a little bag. Cheers.

Obviously I'm having feelings about it but that's not what this particular post is about.

He has PTSD from watching me almost die from a bowel obstruction and having two emergency surgeries, a bowel resection, end up tube fed, and then on TPN. Obviously I survived all of that, but he's still really, really impacted by it. Then I got a brain tumor and had brain surgery, which was a whole ordeal. He struggles so much every time I'm in the hospital.

So for me to be having serious GI surgery, arguably the most extreme surgery I've ever had besides my brain surgery, is so triggering for him. And what can he do, just grin and bear it? It's fucking awful, and I know that I'd rather be the sick one instead of the one feeling powerless and alone in the face of all biology can do to wreck a human.

so here we are again. fuck it, sincerely.

so ready for this gi doc appt to be OVER.

t-7 minutes

me when the disability disables me: oh what the fuck? this sucks. what the hell man!

Skills you shouldn’t have to learn to survive yet child abuse forces you to:

moving around without making any noise

moving around the place without turning on the light

locking/unlocking doors in complete darkness

staying stoic in the face of screaming, threats, and violence

pretense of being calm even if in deep panic

perfect pretense of being fine even in the middle of breakdown

silent crying, crying without making any noise or even tears

doing physical work while crying or injured and not stopping

sensing when someone is angry or stressed because now they’re a danger to you

comforting and calming people down in desperate attemt to lower the amount of danger you’re in

recognizing a person by their footsteps, or a car by the noise it makes when turning to a stop

turning all injustices and anger inwards and making it into self hatred

hiding scars and injuries

expertly making excuses for marks or scars on yourself

dissociating in a second if there’s danger of new trauma

repressing mountains of trauma

surviving emotionally completely on your own

the fact “doctor shopping” is a term that exists at all is constantly fucking insane to me. imagine if that existed for any other profession. imagine if you went to a mechanic and told them your car was making a strange noise every time it started and they said well that’s actually not a big deal at all and it’s totally normal and you’re overexaggerating the issue so you can get car parts you don’t need. and then you left and told your friend you were considering looking for a new mechanic because of that and they were like ummm why are you mechanic shopping?? you can’t just go around to different mechanics until one tells you what you want to hear. obviously if that mechanic said your car is fine it’s fine! and you’re like oh ok i guess so you just keep driving your car like normal and then two months later it explodes and nearly kills you. now you have to pay for your medical bills AND a new car. also the mechanic that told you everything was fine is deemed completely unresponsible for this and you still owe them 300 dollars for telling you your car was fine and also all your friends STILL think you’re overreacting for wanting to find a new mechanic after the last one nearly got you killed

"Expensive and accessible can exist at the same time, just because a disability aid is expensive doesn't make it not accessible".

I hate you. Yes it does.

If the absolute, overwhelming majority cannot afford something it is inherently inaccessible.

on Tuesday I'm seeing my GI doctor to find out if I'm getting an ileostomy and I am absolutely freaking out about it. deep breaths

i understand that this is the "disabled people know our own limitations" website, but ime, if you are the kind of disabled where everyone around you knows about it and has known you as a weak, incompetent, subhuman creature your entire life: it is important to learn how to make the distinction between "i can't" and "i'm not allowed to."

"i can't hold fragile things without breaking them" vs "my housemates won't let me do dishes anymore."

"i can't manage my own finances" vs "my family won't let me make my own financial decisions"

"i can't ever learn how to drive" vs "the state has decided that people with my disability cannot be allowed to drive."

also "what would need to happen for it to be possible for me to be able to do dishes?" or "what would i need if i were to ever move out?" or "what kinds of supports would i need if i did try volunteering?"

even if the answer to these you come away with is "i actually cannot do the thing, no matter what supports or accommodations i'm given" that's fine! they're still useful questions to ask!

your mistake is thinking healing will always feel good, and not often like molting while clung to dead tree bark

I ain't wrong

emotional processing is so funny because sometimes you’ll be violently sobbing on your bedroom floor over something that happened 4 years ago and then you’ll just. get up and make coffee. and go to the grocery store. and take all this fundamental sadness for a walk. and ponder the cosmic experiences of humanity while eating a sandwich. and that’s healing.

R.M. Rilke, The Man Watching // Euripides, An Oresteia (trans. Anne Carson) // Oscar Wilde // Hanya Yanagihara, A Little Life // @bitsbyt3s // Mary MacLane, "January 20", The Story of Mary MacLane // Trista Mateer // see 4 // @kafk-a // Olivia Laing, "Loneliness: coping with the gap where friends used to be"

I was just thinking about how weird it was that my mother never let me have a job, she was so against me working. and then I realized:

I had a job. She didn't want me to waste time flipping burgers when she could be pimping me out. That was my job, to her.

My sense of self and understanding of my own situation is so shattered that it's taken me like 15 years to even put that together.

I sit with my grief. I mother it. I hold its small, hot hand. I don’t say, shhh. I don’t say, it is okay. I wait until it is done having feelings. Then we stand and we go wash the dishes.

— Callista Buchen, from “Taking Care,” published in Thrush

the main reason I don't want kids is because I don't want to become my mother. but here I am, supposed to be reparenting my inner child, instead beating this part of myself up internally because it's so needy. somehow I still became her.

the most fun part about having a serious dissociative disorder is finding a password protected document in your "therapy" folder titled "memories" and not remembering the password.

jk, there's no fun part, this is hell

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions