I’m working on creating a PDAfae discord for those who would like a place to socialise with fellow PDAers/parents of PDAers.
Overtime I will need some moderators to support this effort, please feel free to email me at PDAfaeATgmail.com (replace the AT with an @) to discuss this.
I will also be sharing this on facebook, and in facebook groups, and instagram.
Recently I’ve been really struggling with social isolation and feeling very lonely. I live alone, and lost all of my friends after my 2023 mania. I haven’t managed to make anymore yet.
There don’t seem to exist opportunities to meet people where I live. There seems to be a social viewpoint that a worthwhile thirty something is at least a parent, definitely in work, and ideally in a committed relationship. Being outside of those categories means no one wants to know.
I attend a local community hub, that is only open for four hours a day… so this doesn’t fill up much time. It’s also mainly attended by people in their 50s and upwards. Anyone around my age is a volunteer, and thus not allowed to share phone numbers with me. As for volunteering myself, the leaders of the hub don’t seem to think I’m ready to do so…
But then, this isn’t just a here and now problem. It’s a pervasive, lifelong problem. My life story is one of ostracisation and bullying. friendship breakdown and social isolation. It makes me feel like I’m not fit for human interaction, that I don’t fit with my fellow humans… and it reduces my quality of life.
It doesn’t help that I was in a situation where I had no control over where I ended up living. If I was able to work, I’d probably rent a flat in a local city, where there would be greater social opportunities.
I’m really frustrated by my life right now.
The way I posted during and shortly after my hospitalisation has left me feeling out of control of PDAfae. It altered my usual posting style, especially as psychosis causes disorganised speech, which I was still slightly affected by when I returned here.
On Instagram I deleted a few posts to regain a sense of control. I am not sure if the same answer is right here. I might simply alter those posts with a note denoting their circumstances and that I may no longer agree with their content. Some may be deleted though.
A little while back Comfortandkindness shared this post on Instagram, talking about the difference between many books on ADHD and autism, in that the latter foster more self acceptance, as opposed to tips and tricks to function better.
It makes me wonder if I’ve had enough focus on self-acceptance of PDA life. I know my recent experience has been shaped by my attempting to regain functioning lost through bipolar episodes and burn out. I don’t want that experience to lead to a point of treating my PDA as something to be “fixed” though.
A PDA neurotype leads to a very distinct way of being in the world. Like comfortandkindness says in her post, that way of being isn’t a problem to be solved. It’s something we can accept and embrace.
Equalising is a commonly discussed term when it comes to PDA kiddos. I’m not sure though, that adults are entirely “above” doing so, when under enough stress.
As in, for me, being on wards induces exactly this. There’s a known “us and them” effect on wards, especially NHS wards. Staff are the Us, patients are the Them. We, who are Well, Those who are Unwell.
As a PDAer, I am effectively allergic to this entire environment. It’s so stressful. I can barely cope with hierarchy at the best of times, and definitely not completely arbitrary “we’re the Staff, you are the patients” attitudes. (This forms part of my personal thinking about PDA is that we seem to come in three stripes: eglatarian, communicator or negotiator, based on which of the criteria we have most strongly. This isn’t based on anything overly scientific, just a feeling I get from observing, interacting with, and being a PDAer. I might post more on this in the future – depending on what happens with demand avoidance!) I definitely really relate to descriptions around intolerance of authority and hierarchy – as a constant trait, compared to my demand avoidance which can actually fluctuate quite dramatically.
As a result, these environments cause me to equalise. This can take a more benign form of addressing everyone in the place as a human who might be friendly, it can take the form of giving a staff member a screaming dressing down. It’s not fun, it does get me in trouble. It’s why I really need to make a big push now to stay out of psych wards, because well, they SUCK. They’re not a fit environment for any PDAer, no matter what mental health problems we have going on – far too overly restrictive. When you mix that with a poor mental state, everything goes haywire.
This is a big reason I would say, if you know you do have severe mental health problems and suspect PDA: it is very worth saving for that specific modifier in your diagnosis. Unfortunately, the NHS is only willing to include a PDA modifier in children (in some trusts). My Dr Gloria Dura Vila diagnosis has changed my life as a person living with bipolar type 1. It means the wards know they need to add support in, and that I can justify that that support needs to work very differently than they might expect. It backs up my self-advocacy efforts, and that’s invaluable – otherwise who could understand an equalising adult?
Equalising is not “good behaviour”, and I find the best thing I can do as an adult is seek out the environments that don’t provoke it. Living in my own place, in the community, with greater control over the environments I find myself in is a big part of this. For me that’s going to mean, complying with my clopixol injections and doing my best to thrive now. It’s been a rough few years, but here’s hoping I can head onwards and upwards now!
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:
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.
I’ve been reading back through this blog, and it struck me – possibly my biggest trigger for demand anxiety is when other people are Super Enthusiastic!
E.g. Oh I really wanna play this game! Let’s play several rounds!
Oh you’re doing really well at this, let’s keep going!
OMG I really love puzzles, and you’re a good help, let’s puzzle right now!
Sigh. Every damn time, it’s fatiguing. I’ll often join in initially, and find I get a building, creeping sense of demand anxiety and need to stop way before the other person wants to. It’s very frustrating.
I’m not actually sure what the answer to this is. I don’t like feeling like a “killjoy”, it’s lovely when others are enthusiastic. I just… it’s also hard, and anxiety provoking.
I’m dating myself tonight, lol.
I’m re-creating old faves from a shitty past relationship: rum, cola, churros, nasi goreng. I’m sat in a local cafe-bar.
I’m in love with study. With the individual members of my inner world (plurality is an odd phenomenon, and no I will never be naming any of those parts of self openly). My family, my future pets, my future adopted kiddos – I have so much love to give those little ones, honestly.
I’m full of love for Cardiff, the first time I ever felt “at home”, but sensible enough to remain where I am right now – because having a place to live is a reason to love life.
I’m not in love with every aspect of everything, and never will be. But reasons to live are reason enough!
It’s interesting being aromantic on Valentine’s day. It’s a “holiday” I never saw the point of: socially prescribed romance day ughhhhh. I’ve never celebrated it with a partner, never ever wanted to. It’s actually quite nice sitting here typing away on a “break the norms” valentines self-date.
Here’s to queer platonic relationships, and one dedicated nesting partner – all to be found yet. Here’s to kitties, and dogs, and homes, and work, and PDA and NAUGHTINESS! Here’s to the disobedience that PDAers live and breathe – I exhort you: disobey (the rules, the guidance, the social norms!)
I’m not actually autistic?
What if PDA is it’s own neurotype?
What if it’s an epigenetic related neurotype – i.e. rooted in neurodivergent trauma, but inheritable mainly through the mother line?
What if being a super social PDAer actually makes you allistic, but also highly neurodivergent?
What if PDA can be researched enough to prove this? What if I’m not able to, when I know so much about my own hypotheses, methods I’d use..
What if there’s a point I have to give up, and hand over my passion to another researcher because I’m not able?
What if, though, it does all work out? What if I can work this hard? What if I can become a truly high flying PDAer – with all my disabled complexity?
What if, what if, what if?
One’s thing for sure, I agree with that Newcastle Uni research that the PDA brain has an “intolerance for uncertainty”!
Hi, you teeny terror tots
PDA fae 