Once every month or two, I wake up particularly depressed. Every person with depression knows that there are better and worse days for no apparent, quantifiable reason; sometimes the world just seems worse from the second you wake up from sleep. The ratio between good and bad ones shifting is a good indicator for having depression or not, or being in remission vs. crisis.
I’ve had more bad ones than good ones lately. And I’ve had good reason for it: My body is fighting me even harder than usual, my social life has dried up and I have noone I’m actively getting to know or who I know is interested in me. And since my social life still hasn’t become stable enough to have longer-term connections and friendships to fall back on, fresh connections are still where I get most of my reliability of being able to talk to someone. Right now, I can’t really talk to anyone, and that takes a toll on my mental health (and, counterproductively, on the little social life I have left too, because I tend to unconsciously overstrain the few people that might be interested, compelling them to leave).
But how did I get here? Some things I’ve never laid out clearly on this blog before, even though they might have been clear between the lines. So why not be a little more clear?
Let’s talk about the physical thing first since it’s more concise and easier to describe.
I almost died five years ago. And I’m not dramatising, I had a CRP of over 500. Old people die before they get to that number and you’ll have a hundred, maybe 200 maximum with the worst chronic illnesses; the healthy number is below 5. What exactly happened is immaterial, what does matter is that that whole crisis shook my fundamental trust in my body permanently. Since then, every time I have a new body sensation, and every time I have any kind of uncomfortableness in my stomach region, I panic that I might be dying again. I’m masking this very well, but fact of the matter is, I’m scared to death from every internal, invisible sensation of strain or pain.
You might think, it’s been five years, isn’t time supposed to heal wounds? Well, aside from the fact that it definitely doesn’t in the first place – agency is the thing that heals, not time –
I never actually stopped being in that crisis. My body’s been so much through the wringer that it’s now full of adhesions, inconsistencies, damages, holes, scar tissue and messed up hormonal balances. The original crisis involved four surgeries, one laparoscopic, one endoscopic and two major open stomach surgeries, and since then I’ve had two more laparoscopic surgeries to fix long-term repercussions. The last one I had just two months ago.
In order to save my life, they had to cut a hole with the diameter the height of a dollar or euro bill into my stomach wall. This hole is just permanently there now, and it herniated, and then the repair herniated, and now it may be herniated again, and there’s painful adhesions all around that get caught in it, and I have the knowledge and trauma of having a hole in my stomach that I have to live with until the end of my life.
And since a couple of weeks, maybe a little over a month, there’s this very specifically located pain that feels like nothing I’ve ever felt before. The closest I could describe it would be burning, but noone I talked to so far really knows what it is. Doctors are bouncing me around, and, like depression, the pain can be better and worse between different days. On worse days, I can’t stand from the pain; on good days, I’m only reminded of it a couple of times throughout the day, but the restrictions it’s putting on my are always there, because if you have something that causes you pain, you instinctively change your behaviour to not cause it, and you stop doing things that do. I’m lucky, for once, that this is happening while I wouldn’t be able to exercise anyway, because with this, I couldn’t, I can barely hike for an hour, which I used to be able to do for hours and am really, really missing. And just generally, I lost a lot of physical agency; I can’t jump or sneeze without triggering the pain, so I’m doing both very carefully and scared.
There’s another condition I’m fighting with right now simultaneously. With these two physical crisises at once, I’ve started to leave people whose connection demands emotional labour and attention on read because I just don’t have the spoons to deal with that anymore. It goes against my deepest ideologies to do that too, and that guilt is also something I have to live with.
I’ve also always had severe body dysmorphia as a result of fathate culture and a childhood and teenagehood of being bullied – including by my parents – for my weight and body. The result is a deep, thorough shame in my body, an instinctive avoidance of mirrors, the idea of people finding me attractive or desiring me being highly unintuitive (which isn’t particularly productive for the whole topic of flirting and sex), and a constant misinterpretation of physical symptoms as just “because I’m fat”, leading me to not follow certain symptoms to their potential causes (and it doesn’t help that doctors do this at least as much).
A particularly nasty aspect of this is that now that I’m not as fat anymore as I once was, I’m highly cogniscent of how much better people treat me now, both in public and in my social life, especially in my romantic life. People don’t like to admit it, but virtually everyone treats thin people better than fat people, even the most progressive ones. Fathate culture is just so deeply burnt into all of us that that’s our collective intuition. This isn’t as true for any individual situation or person as it’s true as a tendency, so this isn’t an accusation, but you can ask any formerly but not anymore (as much) fat person about their experiences with the difference. It’s a universal experience all of us make, and it makes you a) infuriated about having been treated worse all your life for no tangible reason that you could’ve done anything about and b) deeply terrified of going back there. Once you’ve tasted a glimpse of what it’s like for people to look forward to going on a date with you, you just can’t go back to having to chase everyone (even if you still intuitively do because of trauma).
On top of this, I also have severe gender dysphoria. I’m nonbinary, most certainly not my assigned gender, and the longer I go on thinking about this, the more I relate to trans people in media, the clearer it gets which pronouns I feel good about being used for me, the more it seems like I might actually just be trans. I certainly have the gender dysphoria for it. It’s not as bad as it is for some people, fortunately; I can still have sex, but I already don’t like my genitals being named as what they are, and for years I’ve known that if I could snap my fingers and switch into a different body, it would be a very cis one, and not my assigned one.
A few years ago, just after my crisis, before I had my first hernia, I started exercising, and I got quite far. Even while having this hernia for four years (because I had just accepted pain to be a consistent part of my life for a while), occasionally, I was able of pushing my body to limits I never imagined I could reach. There were days in which I felt great in this body. But it’s only been days. Individual moments among weeks of a just fine body feeling among months of being in the default state of this kinda sucks. A glimpse into physical agency Seconds of seeing what feeling good and safe in your body can feel like.
Between this medical trauma, body dysmorphia and gender dysphoria, you can probably imagine how much instability my body injects into my life. At every turn there’s something that disconnects me from the vessel through which I interact with life and the world, and any moment I remember that that vessel is how others see me, everything comes back up and the whole connection gets put into question because with how little this body feels like me, how much can they be “seeing” actually me?
A perfect segway to talk about another fundamental barrier to being seen.
I’m neurodivergent. I hope that’s not news. Everyone who gets closer to me knows; most people know relatively soon, within a day or two of talking to me. But that’s often actually because I explicitly tell them much more than them picking up on it themselves, in most cases. And I say it out loud specifically because people often don’t.
My masking and neurotypical-passing have gotten so good that I’m able to ace any everyday-situation on the street and the first phase of getting to know people. But I think that misleads people into treating me like a neurotypical person and expecting corresponding behaviour and skills, and that always becomes a problem eventually. Once there’s a first fight, a first misunderstanding, the first time someone needs to give me the benefit of the doubt for not having wanted to have been uncomfortable or cause some emotional harm, their uncanny valley feeling kicks in and their get tells them not to.
I appreciate that people are respecting their guts because that’s what we should do. But people’s guts are ableist. Typical neurodiverse behaviour causes us to feel uncomfortable simply because it’s a little “off”. “Something’s a little off” is specifically what triggers the uncanny valley feeling. It’s an inherent hard-mode-setting for living in this world for neurodivergent people, and it’s not something you can just overcome by being open-minded, because how you feel matters anyway. I’ve had enough people try to judge me by my actions, moving on with getting to know me because I reacted very well to a boundary, only to weeks later realize they never stopped feeling “off” and then cut it anyway despite me having done “everything right”.
I have one such situation at least once a month; the last is less than a week old, and there really isn’t anything I seem to be able to do about it. If you’re reading this, especially if you’re neurotypical, you might be thinking, just mask less! But then you haven’t been paying attention. Neurodivergent behaviour is specifically what makes people uncomfortable. Masking may make people a little more prepared for what they’re getting into earlier, but it also makes this uncomfortableness happen much more often and sooner. It would drastically reduce the volume of my influx of new people, and it would not get rid of the uncomfortableness problem. As I pointed out, open-minded people don’t really behave any different in the end as they don’t feel any different, and how we feel is the only thing that matters in our social life.
This means that I do form connections at a sensible rate, more than other neurodivergent people perhaps, and sometimes I even get to some level of emotional intimacy, but in the end, I (all but) always lose that connection. I’ve dated a handful of people to a point of starting to make short- and mid-term plans, only for that dynamic to crash into a wall. Until then, these connections are great. Fantastic at times. I see a glimpse of what a healthy relationship could look like. What it can feel like to be desired, to be part of a polycule, to have several friends I can hang out with at once, to have more than one person visit me in the hospital, to have several friends help me get home. Very, very rarely I get a few seconds of commitment. Of the experience of someone actively investing with the intention of holding onto the connection. But it’s always just a glimpse. That’s all I get.
To make this clear: I fuck up too. I’m not trying to blame every lost connection on neurodivergency and move on without reflection, and I most certainly am not calling any of these people ableist; I feel the same way when I’m on the other side of this, it’s normal, and we can’t be held accountable for how we feel. We can, however, be held accountable for how we act on it, and on that front I feel I think I may deserve better sometimes.
And fucking up is another perfect segway.
Three years ago, I fucked up. I fucked up so hard that I traumatized someone in a way I can’t take back or repair. A terrible misjudgement of the situation, too loose self-discipline about protocols, an awful combination of traumatas and bad, bad, bad luck lead me to violate someone’s consent very, very badly. Mentioning bad luck here isn’t meant to sound like it wouldn’t have happened otherwise; it most certainly easily could have. It just may not have been as bad – I like to hope.
But fact of the matter is that it did happen the way that it did. I caused the pain that I did, I did what I did, and I should have known better. And now, not just is the connection to that person dead, but it’s also rippled through my entire social and dating life, cost me several communities that were fundamentally important to me, several potential romantic partners, and shook my own trust in myself not to be a good person – but to be able to be a good person.
I’m not trying to come across as self-martyring or self-flagellating. What the whole thing meant to her is not my story to tell and it’s certainly not my place to make assumptions. Just be aware that by all likeliness, any consequences I’ve had from it, she’s had too but worse, so please just make that assumption moving on from here. Even though the nature of my trauma is vastly different, the faces of the symptoms and consequences may still be comparable. When I get pushed out of a community, she may have not been able to get into it in the first place. If I feel like I don’t deserve care or attention out of guilt, she might feel the same way out of shame. Please don’t actually compare – the point is, I don’t know how to talk about my trauma without making it about myself, so I just won’t try and ask you to be aware that there’s two sides to this and that “the objective truth” is an irrelevant aspect on a personal blog. It’s not irrelevant in the world, though, so keep the emotions stored in your head as just that.
After the whole thing happened, after I hurt her, I stayed on social media, because I thought our filter bubbles are far enough apart from each other that I should be able to keep out of her way and life. As it turns out, that was naive. After she wrote about her experience several times, she eventually named me publicly. I hemorrhaged 10% of my followers by the hour on two different occasions where she was being particularly explicit.
The first time, I almost committed social suicide by going on Twitter and saying out loud that Yes, that’s me, please go and hate me now, but I remembered what two (ex-) partners had told me, which is to go to an organization concerned with doing couple therapy in situations of abuse, offering an environment for mediation and transformative justice and psychologically accompanying violent purpetrators on their way out of spirals of violence. I sent them an email, and a few weeks later I was a part of a self-help group for a handful of people who had all violated someone’s consent in one way or the other and were all dealing with consequences of differing natures because of it.
It helped to see that my experiences weren’t necessarily the worst possible ones – one guy was attacked on the street by a guy who had just heard about it second or third hand and punched so hard he broke his face bone from the nose to the eye, making him breathe through the latter. Several of the guys there had been told to never appear in certain areas or social groups anymore, one or two were told they need to move, perhaps even town. What all of us had in common was that we didn’t mean to hurt anyone, even though we all made some kind of terrible misjudgement, and that we were all there, trying to be better people, hold ourselves and each other accountable, and were struggling to live with the guilt of having caused such pain to someone we deeply cared about.
This accountability problem is the one I personally struggle with the most. I just don’t know what to do and how to “be the good person”. I’ve never been given any instructions on what to do or how to behave, aside from singular one that from my perspective might as well be suicide. I’ve not been told to get off of social media, which events or groups to not attend, what or how much to tell other people including in my life, so what I try to do is what I think that people whose opinions I care about would say is the right thing to do.
After the second time she talked about her experiences and started naming me publicly, it was obvious I need to get off of social media. The community made me political and I had formed several friendships and even been a part of external subcommunities there, it was the most important social group I had ever had to that point, an entire second life almost, but I don’t know how else to interpret these actions other than a direct command to leave.
Keeping out of her life is the easy one. You hear this everywhere and it’s trivial to understand. What that looks like is already harder to grasp though. I now understand that it should’ve meant to get off of social media immediately; the local political left scene is just far too small for some of my more viral posts to not pop up in her timeline, but what does it mean for events, with both of us living in different, but somewhat nearby towns? I don’t go to public pride events or protests to make sure, and for social groups, I always checked the online attendee list to see if there’s anyone on there who’s blocked my profile, and if there is, I stay away. Even if it’s not her, it may still be someone who heard the “stories” and would be uncomfortable with my presence, perhaps even cause a scene. I don’t want either of that, so I stay away.
This has lead to me missing out on a lot of social life that would or could have been formative in my current phase of gender and identity exploration. I thought that’s just fair as she surely took a hit to her formative years too, but it seems it wasn’t enough anyway. Two years ago, I started being a part of a group that helped me kick off my gender exploration journey. It was extremely complicated for me to get a foot in the door of this group, both because I had no idea how to handle my accountability towards them without dragging anyone into something they didn’t want to be a part of, and because I’m just way too neurodivergent for group dynamics to make any sense to me without days and several friends of reality checking after every single meeting. But I managed to slowly, very slowly, become an entity in this group. I tried to be as productive as possible, both socially and psychologically, by trying to make sure noone gets behind, and by pushing the group into a direction of group dynamics I think are healthier, like establishing a culture of welcoming every new person instead of expecting them to insert themselves somehow. I cooked for the entire group and tried to mediate a conflict which saw the origins of the group annihilate themselves.
And I tried to be as accountable as possible, by telling the original group leader what I did, by being transparent to anyone I get personally closer to and do anything with, and by keeping myself out of conversations that aren’t my place to be in considering my positions, which is also quite hard to navigate considering my very strong opinions on how important the “victim”‘s perspective on instances of abuse are and how consent mechanics function. I did my best to give a good example of both consent communication and handling of boundaries, and got complimented for it; I figured the best I can do is try to give people a perspective on consent communication that makes it applicable for themselves (which I’ve been told I achieved numerous times).
I invested emotional labour like I never had, I applied my entire collection of social and psychological knowledge to try to make myself be productive and elevate others and their voices. I worked harder than I ever had to be the best possible person I could be among them. And in return, the community was nicer and more welcoming and empowering to me than almost any person, and certainly any group, has ever been to me. I made some experiences there that I will remember until the end of my life; the “best” moment of my life in terms of a sense of gratitude, identity and wholesomeness happened there, they taught me standards for what I’m allowed to expect of people, and they gave me a glimpse into being not just accepted but appreciated as a member of a community, of society, of humanity. They gave me the feeling that I belong somewhere. That I can actually have a place in all this. A feeling I had never had before – but I would only have it for a second.
Eventually, the narratives, which had strayed far from their origins at this point, spilled over from social media into that community. The organizer of the new group, who I hadn’t managed to get friendly enough to inform yet (not that it would’ve made a difference I think), was told about what’s being said about me. As a responsible leader, and I mean this unironically, the only appropriate reaction to what was being said was to exclude me. I wasn’t asked or involved, I wasn’t offered a conversation or mediation with anyone, I was told to leave. Not just that group, but the entire community. I’ve not been to a single related event since. Not a single person I met there, even the strongest friendships who I had tried to start to allow to trust, is still talking to me. Nothing I did, nothing anyone experienced me doing or being, mattered. The stories at this point where several hands removed at this point, both in time and narratively. But that only made them more distinct.
I can’t blame any specific person for their actions, but it’s also not my place to call the narrative into question since some of it is true. I can’t even say that the essence of it isn’t true anymore, because the essence of “plot”, of what happened, is. From my perspective, the essence of the “story” that’s being told is off. But that’s a distinction I really can’t make without coming across as shifting the blame away from me or even onto her. And no matter what happens to me, I still need to be able to live with myself. If I violate my own ideologies, I’ll be the one to never forget. And I have very strong opinions about which perspectives on this kind of issue matter more. So if I do anything that would risk violating this core ideology of mine, I don’t know how I’d live with that.
So, to make sure that no counter-narrative is being created, I don’t say anything. I step away and stay silent, hoping I’m one day allowed to have any of what I saw again.
I really wonder if I’d be better or worse off if I didn’t occasionally, very rarely, have these moments of seeing that life could be good, could be okey. That I could belong, that I could feel like the universe has a place for me. These moments teach me standards, which extremely clearly improve my social behaviour and -life. But they also show me what’s then being taken away with the strong suggestion that I’ll never ever be able to actually get there, because the reasons for why they’re being taken away are now out of my control.
In none of these moments I – felt like – I had any say in the matter. My body breaks apart no matter what I do. People break up without ever trying to negotiate an alternative dynamic that might be able to work out. Communities ostracize me without offering any of the options they applaud publicly, like mediation or transformative justice. I’m not being considered in any of it no matter what I do to be or try to prove that I can be a positive influence, a productive factor, in the world, in society. They say my needs matter, romantically, socially and publicly, but I’m not allowed to make mistakes trying to allow faith in that being true, I’m not allowed to hope for some assistence in social behaviour, and I’m not allowed to be more than a narrative no matter where I go as long as I want to keep my ideological standards.
Like with my body, I’m being given no agency, and agency is what heals trauma. I don’t know what I’m supposed to do. I tried to kill myself two years ago after I tried to do the accountability thing and did it badly, losing another glimpse into ~utopia~, because I was just completely out of ideas and hope.
I do know why I’m having more bad days than good days recently. The less agency I have, the worse I feel. Fighting my body without a social life during SAD-drenched winter… There’s no agency to be had here.
I think I’m gonna start going on hormones.
jatenk 