PDA fae

Tag: trauma

  • Limitations

    It goes without saying that life with disability, is a life lived with limitations. And I suppose also, it’s worth noting that that is every life lived, ever. No one is capable of every single thing ever.

    I’m struggling at the moment though, to accept the very real limits on my capacity, my chances, my opportunities – my ability to live my life as I would fully, authentically choose. I guess that’s part of being a PDAer, we don’t take well to having that taken from us. For me, my chronic pain and my bipolar (and my undiagnosed traumatic stress) really do take that autonomy from me.

    Hopefully over time I can go from strength to strength. Hopefully I can build a robust, and real, support network. Hopefully clopixol is as good a drug for me as I think it could be. Hopefully I can quit being a revolving door patient now we’re five years on from 2020.

    It’s all just “hopes” though. Progress is slow, and so uncertain. It’s so hard not to get lost in the “if only” and the anger. The grief. The rage at mental health teams that seriously let me down in my 20s. I first communicated my complex trauma at 22, at 34 I still do not actually have any trauma diagnosis – I find this frankly ridiculous. The closest I ever came was “it’s mild trauma, therefore BPD”… which just, uh, no. I’m angry that I had to spend thousands of pounds of savings to get a PDA modifier that was the only reason they ever changed their tunes, and started actually *listening* to me.

    What do you even do with that amount of anger? It’s only worthwhile if it’s used to channel towards something. I’ll always value fellow psychiatric survivors/patients/service users, of any stripe.

    On that note, I’mma quit rambling, and share one small thing I’m doing to try and help make a difference:

    El’s Feel Good Fundraise

    Raising money for mind is a small way I can channel myself, my experiences and my emotions right now – please, if you can, help me take a stand for those of us in society living with mental distress.

  • Advice for the teens

    Hi, you teeny terror tots

    • learn to accept deadlines as a way to channel your passions
      • whether that’s uni, starting a business, cleanliness, whatever: deadlines are a part of life. Don’t take them too seriously, because the only ultimate one is actual death, but still
    • learn to tidy AND learn to clean
      • Anyway you can, anyway how
      • These are the skills that truly prevent self-neglect
    • I bet you’re a better cook than I am!
      • If not, start out with baking
    • Embrace your own personal form of brilliance
    • Learn to use some form of AAC
      • A big part of PDA is the language aspect, and AAC helps all humans communicate
      • even if it’s just a ‘I’m ok, I’m NOT ok’ wristband – you’ll help all your interpersonal relationships
    • Learn to be ok with your own company, and learn when you’re getting too intense about one specific person
      • No one loves being the focus of a special interest/a favourite person – not even your partner
    • Forge your own paths, please: we’ve all got ways to shine.
    • Also; let’s teach this world the beauty of stimming, eh?

  • Emotional flashback.. again

    I’ve been super anxious recently. My antipsychotic depot’s cause this each time so far outside of hospital, for Trauma Reasons. This weeks was better, in that I didn’t get a week of intrusion symptoms, but I did get nightmares the night before.

    I was also extra-sensitive to loneliness. I’m not entirely sure why that’s what came up. I suppose it might have been an emotional flashback. The feeling: all alone in a hostile space, post trauma.

    I emailed the PDA society, my therapist and SANEline, all of which have been good sources of support for me in the past. I also tried nightline for an immediate response, which has historically been the best helpline I’ve used (it’s by students, for students, term time in the UK). It wasn’t so helpful this time, and I should have ended the webchat much sooner – it amounted to a degree of emotional self-harm that night.

    Thankfully the email responses were a lot stronger. The PDA Society supporter urged me not to give up hope of making connections, though they edged on advising learning to mask better which I’m not 100% on board with. They talked about working with a professional and trusted family member/friend to work on mastering ‘social do’s and don’ts’. I can see some use for that, but it’d be nice to get advice on ‘here’s how PDAers meet people they can be themselves with’. I do appreciate them being able to supply recommendations for professionals that can support.

    SANEline suggested hobby groups, and offered questions for further thought. I still need to respond, it’s likely to be a validating discussion. That’s what I find SANEline are most useful for when I talk to them.

    My therapist had the best response, which is perhaps unsurprising given she knows me as an individual. She stated that perhaps humans are not the most reliable source of connection. As such, she suggested that maybe I need to spend some time at a Cat cafe to get some oxytocin. She also reminded me that I can brainspot in my own time to strengthen my brains awareness of my good qualities.

    So I put that into place after my depot injection. Headed straight to the local cat cafe. A kitty prompted clambered straight onto me and wanted to be held for hours. Definite oxytocin hit!

    Following that, I went to the local MH hub to talk to some humans that understand. Had a couple of in depth chats, some light hearted chatting, did a tiny bit of studying. As my therapist predicted, it wasn’t as secure a source of connection – but it was still valuable.

    Then, tonight I had too much demand anxiety to sleep. So, I put on my lava lamp for the first time since being here and chilled out. Over the time I: read my queer fantasy book, read up on developmental psychology to prepare for research assistant volunteering, used Finchcare, and sat and watched the lava lamp to the sound of a fire-scape video on youtube.

    That last activity made me fixate my gaze on the lava lamp, and I began to notice feeling unusually soothed. Gaze fixation is a big part of brainspotting, so I checked if there was another location where that sense of soothing increased. There wasn’t – at the angle I was sat at, my lava lamp seems to fall in my “soothe spot”. I tried it again later in a different room, and yup it’s the spot.

    So I haven’t done the exact brainspotting my therapist recommended, oddly enough – but I have done that! I also did the “injection trauma” spot before leaving my flat to get the depot injection, which does seem to help me cope.

    Now I’ve written it all out, it’s clear to me that was another layer of emotional flashback caused by depot injection. A shorter one this time. I attribute that to the process of brainspotting I’ve started on this trauma. It’s good to now have a brainspot I can use to soothe my way out of emotional flashbacks/help me through them till they end. It’s a reminder that there’s a good reason to meet the demand my therapist gave me to strengthen the neural re-wiring in my own time.

  • Brainspotting…

    …works wonders!

    I’ve been working with an Autistic/ADHD/Dyspraxic/Dyslexic therapist recently, who has a PDA kid on trauma therapy. The modality she uses with PDAers is brainspotting, which is a variant on EMDR. Personally I think it could be called ESDR or EFDR, eye stillness/fixation de-sensitisation and reprocessing therapy. It works on bilateral stimulation, focusing on bodily sensation and rating it (which makes it a somatic therapy) – I tend to picture my bodily sensations as colours – and eye fixations. During this, you think about or visualise either a positive resource, or your trauma, either increasing or decreasing the feeling respectively.

    Tbis therapy (along with lamotrigine) has helped my life hugely. I have a lot more faith in the universe, and feel more comfortable with spirituality. I will post more about this shortly. I feel able to experience enjoyment, and trust in myself. I feel better able to self-advocate, have better self esteem, and better internal communication.

    I won’t say ‘I recommend this’, all I can say is how much this has helped me. It’s really starting to turn my life around. I finally feel like there was a point to surviving.

  • PDA and dental care

    As a kid and teenager, I was prompted to brush my teeth regularly by my parents, who’d get very involved in the process. Unfortunately, when I reached 17/18 they abruptly stopped this, saying I was old enough now to manage this for myself.

    My PDA t0ok this as an opportunity to be avoidant. I would have benefitted from a much more gradated approach to being in charge of my own teethcare. It didn’t help that my parents had set the expectation that adults use adult toothpaste, which is a sensory hell for me, far too strong a flavour. Instead of being able to continue on with the habit, it turns out it was in no way a habit for me to brush my teeth, and I neglected to do so for about ten years. This was not helped by my worsening mental health, and ADHD, which both likely also contributed to this self-neglect for so long.

    Now, unfortunately, thanks to this, my gums are in a very bad way. I need to see a dentist soon because it’s gotten so bad. I’ve had quite a few bad experiences with outpatient procedures, including dental, because I don’t seem to respond well to local anaesthetic, in that it doesn’t cause me to go particularly numb – I can usually feel the entirety of the procedure, including all the pain.

    As a result, booking to see a dentist was very terrifying for me. I had a panic attack, cried and ended up very depersonalised (a form of dissociation in which your own person/body does not feel real to you). Thankfully I did manage to not be avoidant – more in terms of trauma avoidance here – and did book the dentist appointment. That was mainly because staff here at my hospital will be able to attend with me, otherwise I probably would have avoided seeing a dentist.

  • PDA + trauma = ?

    When I started this blog, I wanted to share the perspective of a PDAer living with complex trauma. One of the key ways that affects my PDA presentation is that I only barely meet the criteria of using ‘socially skilled avoidance’. Because it never worked. It was never safe to try. Or people would push me so hard, I’d rocket up the triangle shown by the PDA society here.

    I’ve mentioned before here that I learnt to fawn for control, everywhere. It’s hard to know where the balance lies when it comes to healing the trauma response, unmasking, and being healthy. My therapist emphasises choice – choosing to engage or avoid, freely, rather than reacting out of trauma or PDA related nervous system activation. This feels to me to related to a drive for autonomy, which always makes a lot of sense to me. I think it would take a life with a lot of autonomy to be able to respond from choice, rather than PDA.

    I don’t know if with time I’ll start to discover and learn the more socially skilled avoidance approaches. It still seems to me that faced with those, most people apply force, even to a fellow adult. NTs are big on compliance, for sure.

    I suspect that I will remain a PDAer that uses outright refusal as a simple way to set boundaries.

  • The intersection of trauma, ADHD and autism

    For many years, the main intrusive traumatic stress symptom I had was rumination. Turns out, an ADHD mind can hyperfocus on trauma, as pointed out by my therapist. My brain will hyperfocus for months, if not years on end on the events and meaning of my trauma – because autistic brains look for the why, and the reason. Unlike allistic brains, finding an explanation really helps autistic people let something be and understand something. Most therapists have said ‘what’s the point, what does the ‘why’ change?’, my current therapist understands that it’s different for autistics.

    It’s not a good thing to hyperfocus on trauma. It becomes the only thing I can think and talk about, which overwhelms the people around me. It’s prevented me from studying properly, and is the main reason I couldn’t study at university. It becomes very literally all consuming.

    Thankfully, understanding my ADHD and PDA helps – it’s the rhyme and reason as to why adults in my life became so forceful and abusive. It’s absolutely not an excuse, but it is an explanation. That alone means my brain has far less to puzzle out and want to make sense of.

  • Lived experience work

    I’ve been recently looking at opportunities to get involved in lived experience work, especially research. This started after I learnt that the Survivor Researcher Network were offering survivor research mentoring, as advertised in NSUN’s email bulletin (worth subscribing to if you have an interest in the world of mental health). The term ‘survivor’ in the names of both organisation refers to the concept of psychiatric survivorship. The mentors recommended looking into lived experience panels, which I googled and found Healthwatch Essex, who offer trauma and research ambassador positions (among others).

    Something I’m particularly excited about is plans for the trauma ambassador group to look at a scheme for the trauma of autistic and learning disabled people who end up stuck in psychiatric wards due to challenging behaviour, but often without a treatable mental illness:

    I need to put some real thought into what we could do that would meaningfully address this. I don’t want us to offer something to ameliorate the situation, which then gets viewed as having dealt with the situation – the only answer to these people’s ongoing trauma is discharge to a more suitable location. I’d like to either do some campaigning, or something for survivors of this situation, to help them with their traumatic stress.

  • Notes from therapy

    I’ve been worrying for a while that I might be a ‘failure’ at my supported living, in that because I’m PDA as well as mentally ill (it’s mental health supported living), the staff won’t be able to support me to eventually live independently. Most people, when I bring this up, tell me that it’s a process and I’ll make progress over time. To have more self-belief that I can achieve this.

    Unsurprisingly, the person who understood the reason for my worry was my therapist. She understands how disabling PDA, autism and ADHD can be, and said it’s possible I may not be able to. She also stated that being unable to live independently is not a failing. At one point, she praised me for thinking about the future and I said most people tell me to stop trying to think so far into the future. I love that she knows that as an autistic person, I want some sense of certainty and predictability, so I will naturally try and plan the future so I can feel safe.

    We also discussed ways to try and meet independent living tasks. She suggested maybe deadlines would help, or maybe I need someone to say ‘this needs doing Now’. We considered entering tasks in a diary to see if they would create a deadline that helps, or if they create demands that hinder.

    I need to explore further whether using others for prompts is relying on not feeling safe to avoid demands from other people, and whether this is relying on a trauma response. I do agree with my therapist, healthy lies in choice – to comply, or avoid. PDA avoidance isn’t a choice, it’s a threat response generated by the neurotype. My response to demands of complying also does not feel like a choice, it feels like the The Only Safe Option, and it would be nice to feel safe enough to avoid. I suppose though, this should be being able to avoid as a choice.

    I talked about how since discovering PDA I worked on feeling safe enough to actually feel demand anxiety. Taking some time when faced with a demand and being curious about how it made me feel, gently, and discovering that yes, it’s stressful, there’s anxiety. I do wonder though, after the session, if I’m not feeling safe enough to feel demand anxiety in response to demands from other people. I think it might do me good to work on sensing the demand anxiety that arises during interactions, and creating safety to have choices, including the choice to avoid.

  • When nowhere is safe

    I’ve mentioned a couple of times now that I tend to resort to ‘fawning’ in response to external demands from other people. What does that mean exactly?

    Harry Thompson offers a good explanation.

    In his post, he describes the situation where the child is safe at home to retain control through demand avoidance. That wasn’t my situation. My parents went to greater lengths to force compliance than my school did (and my primary school teachers went far enough), including the use of violence.

    As a result, I’m an adult PDAer who doesn’t feel like I now meet the criteria of being skilled in social approaches to avoid demands. These never worked for me as a child, every adult I was in contact with would force compliance through abusive methods. So now, I don’t feel like these social methods ‘work’, nor do I usually feel safe to attempt to demand avoid. Instead, I learnt to fawn for control in all situations.

    Edited 8/3/23: I no longer recommend Harry Thompson as a resource.