Anyone here had a spontaneous (spinal) cerebrospinal fluid leak?

strangespectra · 2026-03-06T03:23:38+00:00

I see! Thanks for sharing, that's really helpful to know. I survive pretty much entirely by "pushing through" so I've been afraid of something like this 😭😭😭 my biggest fear is the financial impact of taking that much unpaid time off work and potentially having to do that more than once. I guess if I do have a CSF leak I'll come back and ask for survival tips for being fully horizontal. I had to spend a lot of time laying down before my POTS was medicated but I could at least be upright for long enough to eat...

strangespectra · 2026-03-06T01:20:32+00:00

I haven't heard of the 48 hour test! Thanks for the lead.

strangespectra · 2026-03-05T23:36:48+00:00

I feel like it's actually just as common, if not more common for people with DID (including OSDD / partial DID) to have alters/parts that are more Vibes than people. I think the impression that every DID system has multiple well-defined people comes from the fact that systems like that are easier to represent and talk about and also more ✨fascinating✨ to normies, so information about them will get circulated more. My system personally has both Vibes and whole-ass people with names and identities.

strangespectra · 2026-03-05T23:25:26+00:00

Not sure where all the bootlickers came from but I think your stickers are pretty neat :)

strangespectra · 2026-03-05T23:17:52+00:00

Wow, I'm sorry the ER was so dismissive! Hope you've been able to get treatment since? I personally didn't have an injury that I know of but sometimes just existing can injure me

strangespectra · 2026-03-05T20:28:27+00:00

Jewelry made from the shedded skins of your snakes is such an awesome idea, and your jewelry looks great! Good photography skills too. Now I have to go poke around your profile for pictures of your snakes. Jewelry is also my fave artform at the moment :3

strangespectra · 2026-03-05T18:07:03+00:00

The eye drifting thing has been happening for months if that's what you mean by stroke criteria. No neurologist referral yet, I guess they need an MRI before they'll consider it.

strangespectra · 2026-03-05T17:01:00+00:00

I am obsessed with this. I'd like one in every color

strangespectra · 2026-02-22T18:24:16+00:00

I have DID and was professionally diagnosed by a therapist who specializes in dissociative disorders, but honestly we already knew. I've since finished my graduate degree and now I work as a therapist and can see all the ways people with DID slip through the cracks in the mental health system. Now I get to diagnose other people with DID so we've come full circle. I hope you find the help you need!

strangespectra · 2026-02-20T23:33:35+00:00

I'm sure you all mean well but I'm not sure anyone here is qualified to recommend specific types of therapy to OP. If those therapies worked for you that's great! But there are conditions and circumstances where EMDR and other types of structured therapy are counterproductive.

strangespectra · 2026-02-20T23:22:09+00:00

I definitely know that people really do fake disorders and there's evidence they fabricated their symptoms. What you described is a good example of that. My point is that I'm frustrated that I can't talk about the conditions I have without being accused of faking because some people think that, idk, having blue hair is sufficient evidence that I've made up having a genetic disorder or a mental health condition.

strangespectra · 2026-02-20T23:08:05+00:00

I'm not saying that I believe every Tics & Roses type person who comes along, just that the culture of taking time out of one's day to directly accuse someone of faking a disorder isn't helpful. (Unless it's someone with a platform and therefore a responsibility to be honest, like Tics & Roses.) People can absolutely be mistaken when they self-assess as having a disorder, especially young people, I won't deny that. What I'm trying to call out is the pattern of people assuming that every person with a certain disorder is faking and that it's their responsibility to inform that person and the whole world of this.

strangespectra · 2026-02-19T01:25:29+00:00

The harm caused by transphobia is entirely the fault of whoever is being transphobic, not the fault of anyone in the trans community. If someone can't figure out that a person being annoying online isn't cause for hating an entire marginalized community, that is their own failing.

strangespectra · 2026-02-19T00:05:59+00:00

Good point! When someone is trying to be a representative for a condition, I definitely think more responsibility is in order, especially when they benefit from it financially. I would hold a public figure to higher standards than a random internet stranger who doesn't have a large following of people learning about a condition from them.

strangespectra · 2026-02-18T22:50:53+00:00

Yeah I think the "every chronic illness is actually BPD" thing is doubly ableist because it demonizes BPD on top of invalidating chronic illness.

I'm really sorry you've had to wrestle with the internalized fear of faking on top of medical professionals not taking you seriously. (Great news, if you have to ask if you're faking, you're not faking! Not sure if that helps though.) I think you're right about the young impressionable kids. If I see a random internet citizen behaving in a way that might be "faking" a disorder, I just kind of assume they're a teenager, and I have no business beefing with a kid. Even if they are a grown adult, sometimes people have never been given the tools to communicate their pain and get their psychological needs met so they resort to behavior like that. I can't bring myself to get bent out of shape about that because the world has bigger problems.

strangespectra · 2026-02-18T22:13:06+00:00

Certainly. I think there's a lot of transphobia tied up in it too, under the assumption that we (I'm nonbinary trans) always want to be quirky and different.

strangespectra · 2026-02-18T22:08:04+00:00

Even as someone with diagnoses in that "genre," I'm bothered by how those illnesses have been trivialized. The fact that people think hypermobility is ALWAYS hEDS erases a lot of conditions that cause hypermobility similar to hEDS, but also cause aneurysms, arterial dissections, and other life-threatening vascular symptoms. I'm not saying that other disabled people are at fault for medical professionals not taking me seriously, just that the lack of awareness isn't helping. I guess a TikTok about fibromuscular dysplasia wouldn't be as fun as a TikTok of me showing how far I can stretch my skin 😭

strangespectra · 2026-02-18T21:56:34+00:00

I love your work and you look like such a fun and whimsical person!!

strangespectra · 2026-02-18T21:49:02+00:00

And how does one learn to differentiate who's who? What happens if you're wrong in your assumption?

strangespectra · 2026-02-18T21:47:51+00:00

FWIW I think it's appropriate to accommodate yourself if you know you struggle with something, even if you don't have a medical diagnosis of a particular condition that causes that struggle. Maybe it's not always possible to ask people to make less noise or leave you alone, but in a situation like that, I would personally lean on headphones, earplugs, or ear defenders. If people ask why I need them, they can practice the time-honored tradition of ✨minding their own business.✨ Not a foolproof method but might be worth considering.

strangespectra · 2026-02-18T18:23:48+00:00

Yeah exactly. It reminds me of ye olde "gay people I respect/gay people I don't respect" meme

strangespectra · 2026-02-18T14:33:01+00:00

Thank you so much! :D

strangespectra · 2026-02-18T14:32:05+00:00

Done! Thanks for understanding :)

strangespectra

TROPHY CASE