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Getting back normal results on something that doctors fully expected to be elevated because that's what the common diagnoses do, as someone who has known their problems are not normal (even within the scope of disability), is simultaneously the most validating and the most frustrating thing. Hearing a doctor say "everything came back normal, I have no idea what is going on" isn't comforting, even though that's the response we expected.

I've known this is not normal, and this is not a common issue. I've been trying to tell everyone this is not normal or common my whole life and nobody listened. They're finally willing to do tests because my body has shredded itself beyond recovery at 21 years old. So much of this could have been prevented.

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my sociology professor is the same person that told me accommodating my disabilities would be reverse-ableist

the class is Social Inequality

you could cut the irony with a knife

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Got a head MRI to rule out neurological causes for chronic pain and uncovered a chiari type 1 malformation (cerebellum extends into the spinal canal)

i knew i was neurodivergent but damn

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New doctor is taking me off of Tylenol 3 and opted for an NSAID (that is barely helping with my hypermobility-related pain) because "i dont want my patients on narcotics"

Problem is, my bulima and OCD both respond to narcotics too. They've ONLY responded to narcotics. I was under the impression this was long-term and was really excited that these two were finally under control for the foreseeable future. I had one month of relief. One month of looking at food like a normal person. One month of not being plagued by almost any of the horriffic intrusive thoughts. One month of eating a normal amount and actually feeling satisfied. And now I have to return to my normal. I legitimately would have preferred nothing at all.

I have no fucking idea what to say to get the doctor to change his mind. Mental health stigma, painkiller stigma, and especially the stigma when the two are paired is just going to make me look like I'm seeking fucking pills.

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me having to decide that whatever neurological issue causing my seizures is not severe enough to check because i cant afford to all the other shit im dealing with if I get an MRI

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shortly after i posted this i re-applied to a company but put my gender as male instead of nonbinary and this time I was automatically sent the link to step 2. literally the only difference was the gender i selected as i applied.

can anyone confirm that demographic info that "doesnt get shown to employers" actually is not shown to the employers because there is no way my luck is this bad

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can anyone confirm that demographic info that "doesnt get shown to employers" actually is not shown to the employers because there is no way my luck is this bad

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why the fuck is my immunologist allowed to just... not write a prescription for a refill of my mast cell stabilizers without warning. I have MCAS. I am allergic to literally everything. OTC antihistamines hardly put a dent in my allergies, even if i quadruple the doses (which is generally the highest you can safely go).

i could literally die without these meds.

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fronting several different times in a day is crazy it's like time traveling just a tiny bit into the future

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i know this question wasn't directed at us, but..

speaking from personal experience, the random flashbacks can completely disorient you in the middle of a task and ordinary things / phrases can be triggering (c-PTSD is from long-term exposure to trauma. anything in that was in that environment / that reminds you of that environment can become a trigger). if the paperwork is about something that's connected to the (c-)PTSD indirectly or especially directly, or about the (c-)PTSD itself, it is likely going to trigger the person filling it out to some extent. if you go into a dissociative episode while filling out paperwork there's a decent chance it's either not getting done or something is going to be filled out incorrectly; in this state we're careless at best. (c-)PTSD episodes can also set off things like fibromyalgia (psychosomatic chronic nerve pain, lots of people with c-PTSD also have it) which make concentrating on something that much more difficult. not to mention all the self-doubt and distrust that many people with it feel due to the nature of their trauma

I'd recommend looking into the physiological changes long-term trauma exposure causes in the brain and what all that can do to a person if you're interested in learning more about c-PTSD's cognitive symptoms - it's equal parts depressing and fascinating imo.

much shorter answer: long-term trauma exposure can have cognitive symptoms + wildly upsetting intrusive thoughts about the trauma + dissociation + flashbacks + triggers + comorbid disorders being triggered by the (c-)PTSD

didn't mean for this to turn into a whole essay but hopefully it answers your question!

if you "offer disability accommodations" but mandate the person have an impossible amount of paperwork to "prove" that they're disabled before even speaking to them, you don't fucking offer accommodations.

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when GI issues

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we're def gonna look into those canes, thank you! :o

we just got a towel specifically for throwing down to sit and rest places too so hooooopefully something works

any tips on how to make walking Not Agonizing? /gen

cars, bikes, scooters, and wheelchairs are not options for us in this shittily developed, car-reliant hellscape and i'm genuinely about to just crawl places. we have a cane and some braces but those only do so much. can't get prescription painkillers, and aspirin (the only OTC that works for us, and docs won't see us so we can't get a prescription) doesn't even put a dent in it :)

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any tips on how to make walking Not Agonizing? /gen

cars, bikes, scooters, and wheelchairs are not options for us in this shittily developed, car-reliant hellscape and i'm genuinely about to just crawl places. we have a cane and some braces but those only do so much. can't get prescription painkillers, and aspirin (the only OTC that works for us, and docs won't see us so we can't get a prescription) doesn't even put a dent in it :)

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let's have a toast to commemorate the 19849250145th time someone asked "YOU REALLY DON'T REMEMBER THAT?"

shoutout to everyone with forget disorders (adhd, DID/osdd, ptsd/c-ptsd, asd, dementia/alzeheimers, schizophrenia, other psychotic disorders, major depressive, chronically ill/phys disabled people with brain fog, people with long-Covid, natural memory degradation, and etc.)

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so thankful for this post bc we had no idea what to call illusions (we'd just go to something like "distortion hallucinations")

I'd love it if more people understood the difference between hallucinations and illusions. So let me try to explain with examples. [TW: examples of auditory hallucinations and illusions described as you experiencing them]

1. Imagine you are home alone with your windows closed and it's silent. And then you hear unfamiliar voices talking about you, it sounds like they are coming from another room. You go to check but no one is there. Your brain created entire voices of people out of thin air. This is a hallucination. There is nothing but your brain creates something.

2. Now imagine you are in the same scenario but your windows are open but the curtains are closed. You hear your neighbors having a conversation, and you hear it as them talking about what you are doing in that moment. They couldn't possibly see what you are doing, so realistically they can't be talking about you, but your brain makes you change the words and hear it that way. This is an illusion. There is something but your brain changes the real thing into something unreal.

It's not always easy to know the difference when you are experiencing it. But if you do know which one it is (nothing there and something unreal appears or something there changes to something unreal) then I think it can be really helpful to label the symptom accurately.

For me it was helpful to gage the effectiveness of my medication. I noticed that I have more illusions than hallucinations, and for me that was a sign of improvement. It can also go the other way, to see if your psychosis is getting more severe.

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It's so bittersweet when someone tells us they hope we feel better soon upon seeing our braces & cane, assuming we have a sports injury or something </3 it's very kind of them to send well wishes, and we appreciate that, but in the back of our head we know this is chronic and that it's forever and that it's only going to get worse, and those well wishes serve as a reminder of this fate

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i love when we make a music cue while switching frequently because it's like we're picking music for the next alter that fronts to listen to and it's always good bc we all have similar music tastes :]

never not going to be thankful for my headmates <33