u/notjuststars

I don’t want to sound like one of those COVID deniers, “I can’t breathe when it’s on!” type of people but I actually do have a lot of trouble breathing with a mask on. It was one of the first symptoms of ME anyone noticed I had, because even a paper mask meant I needed to go to a corner and take breaks and gasp for air. The thicker masks are much worse.

I thought an N-95 mask would be easier because of the little airflow in front of my face but it’s largely the same. Even without a mask it just feels like not enough oxygen is going in, like my lungs are expanding but just not working as well as I need them to.

Does anyone have a workaround? I don’t want to make people unsafe by not masking when COVID and other airborne diseases are still around, but I also know those paper masks aren’t super safe and I still struggle with them

I feel like I am doing a “my steak is too juicy” type of complaint anywhere else but I’d appreciate some insight here

I’m not in crisis. I’m not one bad day from a depressive episode. I can handle stress reasonably because of the skills I’ve learned

But I want help. I don’t even know why, I think it’s because I shouldn’t have to be white-knuckling it through bad days, or because the parts of me that are still more hurt still want that help. I deserve support. I want to be heard, I want someone to know what happened to me and help me, like I know I could just tell my friends but I don’t need sympathy, I need to be heard.

Every time I’ve tried, I barely get through. The only thing I can find is depression/anxiety counselling, which I will still do because I want help no matter how it comes, except for the fact that because I’m not in crisis, no one wants a referral. Last time I tried I exclusively asked for 1-1 counselling or at least a group therapy and I got told all I could be offered was a walk-in thing, where if a therapist was available they would talk. I wanted continuity of care and the timings weren’t ideal so I didn’t pursue it.

And I’m too scared to go to a child abuse therapy group, if they even do those. I know this is ridiculously toxic but I get triggered when people talk about what happened to them in detail, I feel so guilty I can’t think, and I barely remember what happened to me so I know it will just not work. I’m the wrong person for these things

I don’t know. Is there even any options for me? I can’t afford trauma informed therapy no matter how I slice it, but I don’t think any NHS/self-referral things will help me

I know the thing I should be doing is working through the trigger but the day I stop getting startled or put off by loud noises is tbe day I’m out of here, lol

So aside from the obvious, like noise cancelling headphones, does anyone have any ways they accommodate an avoidance of loud noises? Some things I do when I need to;-

- I put down a thin blanket/throw on my desk, so putting things down isn’t super loud. I do have a hard surface for my laptop though.

- I have a manual food cutter (almost like a blender blade, but entirely manual)! Which is amazing as I hate blenders

- I don’t have carpets in my flat, I just have soft socks! The socks keep my feet quiet, and I never have to vacuum

- Soft close lids on toilets and things are also really nice

- As a rule, I try not to stack dishes to dry in case they suddenly adjust and fall, although I find I am minding this less and less. I do like to just dry things immediately but I live alone so that’s not that hard

- Sometimes I put pillows down on tbe crack under my door to muffle noise, it probably doesn’t make a difference but it makes me feel safer

- Microwave with a chime instead of a beep

Any other suggestions? I know it’s not good to completely avoid loud noises but these things definitely help me and make it easier for me to do things like cook and clean :)

I was 13 when I started getting sick. It got put down to growth pains and teenage fatigue until I was gasping for air while grocery shopping and falling asleep in the car on the way back. I got tested for every vitamin deficiency out there, was sent back and forth to the hospital, and everything came up fine.

I was never actually introduced to the idea of ME. My doctor wrote in my notes at some point that I had ‘cfs symptoms’ without ever actually saying that to me, and I googled it in my own time.

The first thing I actually read was in this subreddit. I can’t remember who wrote it, but I remember what was written: about the complete lack of treatment, no cure, barely any management options. Pacing was your only option to not completely deteriorate. I was 16 and still in that push crash cycle until this subreddit literally put the fear of god in me because if I enjoyed being able to shower independently, to brush my hair or take myself to the bathroom, I’d stop doing what I was doing immediately and start pacing.

I was moderate at my worst and at that time I kept getting worse, and now I’m mild, and the entire thing can be attributed to the people in this subreddit, and specifically the sheer amount of people with severe flairs who helped me. They used their limited energy to create resources, to respond to questions, to give me actual advice that was relevant to me.

ME has one of the worst quality of life experiences out there, and I’m a statistical anomaly because I am really lucky to live a good life. And that good life can be directly attributed to you all, to the kindness and empathy I received when I realised I’d have to stop doing things I loved, or reschedule the rest of my life for this disease, or even when I just felt hopeless.

I think I missed severe ME day, but seriously. Thank you so much.

Tl;dr: i have mild ME because of advice and support given by many people with severe ME patients who used their limited time and energy to help me

tw for physical abuse

The title sounds crazy, but I’ve been doing some part work, and there’s a kid who definitely exhibits symptoms of food insecurity. Not only do they get anxious in the absence of food (a lot of fears about money are realised for them in terms of affording a meal), but they also feel really happy and safe when there is food around. Which makes me think it actually is about food, rather than the perception of safety.

The problem is, I was lucky enough to never have any periods in my life of food insecurity.

The closest thing I can think of is when I was a kid, getting in trouble around the dinner table (which was often) meant no one would eat while we were being yelled at, or alternatively being scared to eat because when I was a kid I was scared of being hit in the face while having food in my mouth, causing me to choke.

Honestly both of those seem really seperated to the degree and intensity with which this part has issues around food, and I would love some insight as journalling only seems to be getting so far on the issue

Sometimes, I feel like externally and internally, I am two completely different people.

I did work to not let everyone’s opinions sway me. A stranger used to be able to ruin my day. Now, externally, the only people who dictate my actions are myself and the select few people whose judgment I trust but, if needed, I can go against to do my own thing. I’m very proud of that!

But internally, I feel exactly the same way I feel at the start. Someone I respect disagrees with me and I want to fold immediately. Embarrassment and shame cover everything, and I know it’s just a coping mechanism but it sucks the joy out of everything. Worse, it sucks the joy out of things I want to do.

I do the stuff I want anyway because fuck what other people say, if it doesn’t hurt anyone else or myself its fair game. But I don’t deserve to feel so badly about it. I feel like, on the outside, I’ve done all the right words and actions. On the inside, I don’t know how else to deal with how I feel other than bottling it all up and forcing myself on, but that’s not a sustainable way to go on

She didn’t mean anything by it. I’m young, I was wearing makeup, I am on the milder end of mild, and I am recovering from a worsening of my condition that had caused me to lose a bunch of weight (too tired/nauseous to eat), so I look “skinny” because I’m unhealthy. I don’t look or “act” sick so lots of people don’t even believe I’m sick.

But I was so embarrassed. Today was my first time at a support group, I just wanted to complain about heavy doors and the pain of eating sending you into a crash and not eating sending you into a crash.

I didn’t even talk. I was too embarrassed. Everyone there was so nice and that made it worse, like I’m not in denial about being sick but it very much felt like I had brought a broken bone to an amputee support group. My pain is valid and real, just… not the same. I just felt like I stuck out like a sore thumb, no matter how kind and nice everyone was.

And she said that, that she was “jealous of me” and it sort of made her angry to see me like that when she was “like she was”, and I just felt so silly. it took me a lot of workto be there, I nearly didn’t go. I was there because I’d taken the bus that stops directly outside of the cafe where it was being held, and because I had 2 hours of sit down lectures before and a full free day to rest after. And I’m only in university because I have a disability support plan and a whole host of ways to cope. I have makeup on because I sit and do it every morning because it takes too much energy to stand like that for that long, I can’t do it in my bathroom mirror. I left early partially because of this but partially because it tires me out too much otherwise.

I don’t even know. I just felt embarrassed and a bit invalidated. I don’t really want to go back, which sucks because everyone was so kind.

:(

This took me so long to realise and I feel like such an idiot!

So for a long time something we struggled with was our wildly different perceptions of people. Individual people are sometimes amazing, sometimes awful, sometimes cruel, sometimes kind, and we assumed it was because of our different memories leading to different impressions.

I read something somewhere that people with BPD tend to take neutrality as negativity - so a neutral discussion comes across as negative. Obviously, this is shared in CPTSD.

The thing is, that’s just not true for all of us. For some parts, even slightly cold behaviour is full on anxiety inducing. We have ADHD so varying degrees of RSD, which can range from “actual rejection is mildly disappointing” to “perceived rejection will ruin my week”. And then there are those of us, like me!! Who actually don’t really care. People can think what they want!

So all this time, I’ve been wondering how the same person can be perceived so differently. But we all perceive neutrality differently! An individual’s “hey how was your day” can be perceived as friendly, respectful, mean, careless, etc etc just by virtue of who’s eyes its being seen through

I feel like an idiot because this is such a common sense thought and yet! This is really comforting to be honest because when someone’s slightly cold behaviour triggers one alter, it can be really reassuring to know that the way we feel isn’t actually always what’s happening and we can rely on each other for the clearer picture :)

At the start of my recovery they genuinely ruined my day, now I just don’t like them because they make me feel lonely. But I can tolerate them much more now!

I can also tolerate lots more children’s media, it used to literally be a trigger but now I watch and listen for fun :) so that’s kind of cool. A big part of it was older parts feeling as though they had failed younger parts, but that’s just not the case and it’s weird to say that we’ve actually worked through that. I still can’t tolerate some stuff, but that’s because a specific trigger, not because everything upsets me! :D

It makes me feel sad because it’s something I don’t have, and something I won’t have. But that’s pretty normal. The grief doesn’t overcome me now, but it’s there. It sucks, but I’ll move past it. I always do. even if I feel lonely now, I will not feel alone forever

So a lot of people describe having higher pain tolerances due to dissociation, or alternatively having altered nociception as a lot of people with CPTSD are also neurodivergent

But the thing is I feel like I have quite a low pain tolerance, but I just don’t act on it, for lack of a better word? I’m really wimpy and kind of easily in pain, but people don’t know it.

Like if I have a migraine, I know I should squint and hold my head or something. And the pain feels enough to justify that, I just can’t bring myself to. And I know there will be a point where I don’t have a choice on how I act, but even when I’m in a reasonable amount of pain I don’t really feel like I need to do that until I do.

Or, to give a more recent example, period cramps. It sort of hurts to breathe right now, I don’t want to sit up, I have no appetite, etc. But I guess I could just breathe normally and stand up and just tolerate the pain without comment. Like it would suck and I know I should just curl up in bed but also I could just force myself through it.

Am I just majorly overthinking this? I know it makes me seem strange in front of people, because I will be in a lot of pain (like clutching my stomach, sweating, struggling to talk, but still very lucid and clearly describing what is happening).

If it provides any context I do not think i was allowed to express pain as a kid

I’ve done a lot of introspection on this topic and I think I’ve somewhat reached the upper limit of what I can reason? So I’m hoping for some input

I’m not scared of rejection (anymore), if I ask someone out and they say no, that says nothing about my worth or safety or anything. A lot of the time when I discuss this people assume a fear of rejection and it’s not that simple.

My big fear in relationships, and a massive hurdle that stops me from entering, isn’t that I will be rejected, but that after a certain period of time they will eventually resent me, hate me, and want to leave. Maybe a latent rejection

Two notes that are relevant here: one, that I don’t know why I fear resentment in this situation, because I know that’s not equivalent to abuse. Even if I was genuinely annoying or frustrating to be around, I don’t deserve to be abused, and I would leave myself if that was the case. So I am not scared of the eventual resentment due to the fear of abuse. Two, is that I don’t think this is a fair burden to put on a partner, I don’t think it’s fair to tell them that I have a crushing fear they will leave me and it will be my fault, because if I do something that deserves being left over they should not be carrying my consience.

I genuinely don’t know what it is. I guess it’s a fear of being hurt, or feeling bad that I get left? But that’s far too vague a feeling to pin down well enough for me to work on, and everyone is scared to be hurt and be left after a long time. That’s not to do with CPTSD. Everyone else can recognise that risk and be in a relationship anyway

Some relevant information might be that in early childhood, my main parent had big mood swings, so I grew up strongly with the idea that eventually I will say or do something that deserves being left or being hurt. But somehow I just can’t ameliorate that with this, even though it feels connected. Perhaps a part of myself is still that little kid that feels the world coming down around them with the threat of absence or abuse, but how do I get it in my head that this is not that? Especially when even the idea of it feels so close? A lot of CPTSD is just avoiding triggers, isn’t this just that?

I don’t know. This fear feels like it has its roots in the fact I have cPTSD, and it’s a real roadblock to relationships. I don’t know where to start tackling it, and it’s not exactly something I can microdse. It doesn’t help that I’m having so much trouble pinning it down

Any advice would be helpful, thanks

Just to be clear I don’t want this post being like “i’m so happy, can’t you miserable people get it together?” because i’m unhappy a lot, too, and I feel things quite strongly. I still struggle w the symptoms a lot even thoughI’ve been seeking help, I have bad days, etc. but since I’ve been in recovery I’m a lot better

But I’m honestly a pretty happy go lucky person, to the point where I don’t think people like my friends would believe anything bad happened to me. Like I think I’m so happy people don’t notice my symptoms, I’m jumpy and flinch easily but no one cares if you’re laughing and smiling.

And it’s not an act. I guess mentally it’s because I spent so much of my formative years hanging around for the good parts, no matter how brief, or compartmentalising, or maybe it’s just because every day I’m not getting screamed at is a pretty good day for me. Like my worst day when I’m not being abused, assuming no massive personal tragedy, is like a 3/10 at the lowest? No one even threatened to hurt me let alone actually tried ! And even if they did, at least it’s not someone I live with!

People don’t get how I’m so happy because I have a stressful job and a disability but two people complimented me today and I got to listen to my music on the bus home so for me, despite literally everything else, today was a great day. Doesn’t matter what else. Sometimes when I’m having a particularly bad day I remember things just to make me feel better, silly benign things like how once a barista gave me a cup of straight milk. Nothing profound, but it makes me happy, because it feels like I’ve got something.

But there’s this part of me that is scared that no one will ever believe the stuff that happened to me because of the way I am. I don’t look like I’ve been abused, I look like a seven year old trapped in an adult’s body, and when you look and act the way I do no one ever actually wonders why the fuck you stopped maturing at seven.

I don’t know. I don’t even knownwhat I’m hoping to achieve at this post, maybe someone has something really profound to say as is often the case in this subreddit

Obviously, the identities formed due to DID are a big indicator of the same trauma that caused them or the means by which that was coped with. But idk whenever I see people talk about DID they talk about the multiple personalities, when I honestly think that’s not as significant (at least to me) as the dissociation?

I have parts formed by trauma, with different personalities, opinions, appearances, beliefs. But I could have gone through that same trauma and just split into identical identities but with different memories, because I did not get this disorders because of the identities, I got it because I couldn’t cope with what was happening to me.

I’m having so much trouble explaining myself here but I’m hoping someone understands. It’s the compartmentalisation of it. Identities are as unique as each person’s fingerprint, so everyone will cope with trauma slightly differently and develop different personalities depending on what their brain felt was necessary.

But all of us have problems with dissociating, with memory and amnesia, all of us have problems with CPTSD symptoms to some degree.

When the public perception of DID just focuses on identities, to me it feels as if someone was purely focused on what visual hallucinations someone with schizophrenia experienced, instead of other hallucinations or delusions or disorganised thoughts or coping with reality or treatment or anything else.

My identities matter to me and should matter to no one else. What should matter is the dissociation, the CPTSD symptoms, the rest of it.

Trigger warning for medical abuse.

I had a patient yesterday, a child. He needed bloods drawn, and the condition was serious enough that this had to happen. He only communicated through sounds, no AAC or anything.

I know he had to have his bloods drawn, and like with other non-compliant children when we are completely out of other options (anaesthesia/drugs are not an option) we hold their arm still and let their parents hug them to comfort them.

It made me feel so guilty. I know, I should feel bad whether the child was autistic or not but all I could think about was that we have different nociception, and that if I was in the same position, if I was overwhelmed, would people hold me down? And he can’t communicate what it is that is acutely distressing him, if it’s the tourniquet, if I’m holding his too tight, if the needle hurts unbearably bad, if he’s scared, it’s his arm, his head, whatever. We’re deliberately upsetting him beyond his means of communication and then hoping we communicate right.

And then there’s the other thing, that if a child can’t communicate and obviously doesn’t have capacity, it becomes neglect not to take care of them, right? I am not going to out this patient by saying what the bloods were for, but it was serious enough that their regular doctor ordered these bloods, knowing what it would do to this child. So my options are traumatise a kid until he no longer has capacity to communicate, or abandon the kid until he’s in so much pain he can’t communicate.

Afterwards he seemed okay and I gave him a sticker but I felt sick. Perhaps I’m just sensitive to taking away the agency of autistic patients but still. I know we treated him like any other kid but its more complicated than that, and it’s just too close to home.

I think I see too much of myself in him which is a problem. I know what he is feeling, but the difference is I can communicate it, and it is worse because I do nothing with that.

I’m sorry. I just need to vent. I mask well enough that everyone at work just thinks I’m weird, no one assumes autism. But I’m one bad day away from being about as communicative as that child.

I obviously don’t want this to become a vent, but I’ve been meaning to talk about the emotional abuse of every action you do getting a bad faith interpretation. I’ll start with an example of the opposite: sometimes, one of my family members deliberately leaves the house slippers in the door. Despite the fact it could be a tripping hazard, he actually does it out of courtesy, so that anyone who needs the house slippers before entering that room has them, which is why I actually don’t mind the habit. I know he would never deliberately trip someone.

The bad faith interpretation is that he deliberately left the shoes there to trip someone up, instead of either assuming good faith or just asking. And the type of abuse I’m talking about is just doing that but for everything? A cup left out = deliberately making a recently cleaned room messy, accidentally zoning out and staring at someone = you hate them and have a problem with them, feeling sick = you hate their food and think it’s disgusting, etc etc etc.

I don’t know if this falls into the realm of paranoia, because it also extends into other people’s behaviour, such as assuming someone hates you because they told you that you didn’t have to help them when they were hosting you in their house.

I really want to describe this to my therapist but I don’t know if there’s a word for this behaviour and I can’t seem to describe it without this long winded explanation (I’ve journalled this but it pretty much comes out the same).

What is this called?

I work in a hospital. The child had a chronic health condition. She was under the age of 10 and needed a blood test. I had blood testing at that age and I know it doesn’t hurt that bad, but she was a kid who was scared and she was wailing and trying her best not to scream. Her mother was empathetic but firm about the test because she really needed it.

And I was doing fine, but about halfway through I just sort of remembered that at that age or a bit younger, I got threatened to have my teeth broke in if I cried like that, like if I sobbed out loud. I’ve cried silently since, even now the most I can seem to manage is just breathing in a bit loudly. And even when the kid was crying she was talking to her mother through tears and her mother was talking back, she didn’t have to shut up or anything. idk, it wasn’t anyone’s fault but the mother was so empathetic, it was something about the way she was holding her daughter and the fact that the daughter actually pulled into her because she was scared that just kind of got to me.

Idk. I get like that about a lot of kids in my work and I wish I wouldn’t. Like a teenager or even an adult will come in for an appointment with their parent because they need support, and I’ll act completely normal, but in my head I’ll remember taking myself to those appointments, even and especially when I was scared.

I want to work with kids in my career and loads of people tell me I’d be suited to it but I’m too ashamed to tell anyone that this is the reason I think I’d struggle.

Sorry for the title, I don’t know how to phrase it.

I swear I’ve done the work. I have an identity now, I have self-respect which I had to fight from the ground up for, I have opinions and values that, when I’m calm, I’d do anything for.

But in practice, my most mild opinion that I firmly believe can be pushed over by people arguing with me, and I don’t know how to fix it. I know this is somewhere within distress tolerance but I just don’t know, none of the tools I have seem to work for it, I can be as logical and reasonable as I want but the second I meet an argument I fold.

Today I tried an experiment. I posted a non-inflammatory post on my alt account, in a community that is receptive and positive, about something I believe in. One comment argued against it, a handful agreed but made points that slightly undercut the message.

I nuked the whole post. I don’t want to think about it. I don’t even know why, my logical brain tells me that what I am saying is empirically true and backed by evidence and that obviously, none of these comments (not even insulting or aggressive btw) are going to crawl out of my phone and attack me, but I’m just so afraid. I want it to stop. I didn’t want people to argue with me, even though I posted it with the explicit intention of getting both agreeing and disagreeing views (the point of the experiment).

Please tell me there’s some DBT skill I can use here. I’m scared that at work, I’ll present an argument, and someone will reasonably disagree and I’ll instantly undercut everything I say

Couldn’t figure out a gentle way to phrase the title so sorry if my tone is off, but it’s basically just that. This isn’t a callout post on anyone it’s sort of just a PSA. This whole thing is /nm, I’m autistic so my tone comes off weird sometimes

Different systems will work differently, sure, but if you are traumagenic/disordered, you can’t fuse from trauma. The whole idea of structured dissociation is that trauma causes more dissociation, not less. When two alters fuse in a CDD, it’s because of the integration of dissociative boundaries (it’s also why two alters can merge together but other alters might not be able to). In other words, this is not something that can happen to traumagenic/disordered systems.

This is not to say this cannot happen. Most of the time, when people say this, they say that it happened to ‘cope better with the traumatic event’. Traumagenic systems are not nearly as straightforward, but other systems, such as mixed origin or willogenic, can absolutely have that happen.

But it borders on dangerous to tell someone who may have new alters and new dissociative barriers following a traumatic event that that is not the case. Traumagenic systems are already potentially vulnerable in these spaces, so we have to be careful that we are not applying information that is accurate to different system types to systems that are at the risk of destabilisation because of that advice.

Sorry to double post. I’m aware this might be removed but the truth is I am asking this for later in recovery rather than earlier.

I don’t want to seek out people when I’m lonely, just because that’s not always an option and when it is, it puts me at risk as people who you don’t know who want to assuage your loneliness often don’t do so with good intentions. I want to learn how to manage myself, but loneliness isn’t exactly a crisis, so most of my crisis management skills don’t help. I’m grounded, aware, and feel safe, but I just also feel lonely.

Also, I tried looking for DBT skills for this, but DBT appears to be for missing someone, but I’m talking about just feeling lonely. I’m not seeking anyone.

But I feel there must be something I can do to deal with the loneliness rather than just ride through it. Sometimes going out helps scratch that itch for me, but sometimes it amplifies it. The root cause of the loneliness appears to be the sense of isolation, which I understand won’t go away until I’m further into recovery.

Also sorry for the way I type. I hope this makes sense anyway

I know this post will make me sound really bad, but right now, someone I know has just lost someone they loved. The loved one was not known to me. Instead of feeling bad for their loss or wanting to support them, I want to run away because I am scared if I am near them they will hurt me. This is based off a childhood experience of nearly the exact same thing.

I want to say my reflex is to support them and help them, but it’s not. I’m scared. I can grit my teeth and fight through it to be there for my friend but I’m embarrassed and ashamed of my reflex feelings. And I’ve done enough journalling and introspection to know that this is always my reflex. At the point where I think I am in danger, I will literally do anything to get out of it. All the values, morals, and identity I worked hard to build disappear.

And I know normal, healthy people also feel like this but I guess I feel bad because for me, it feels like defaulting to how I always am. This is my natural state. But I don’t want to be like this naturally?

I want to know if there’s a point in recovery where my first and only thought isn’t how I can keep myself safe, but actually how I can behave in a way that aligns with the morals and identity I fought for. And how I get there