PERSONAL

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Invisible Illness

5 years ago3,040 words

Apparently I'm not cripplingly mentally ill because I don't appear blatantly broken to professional strangers I've talked to for a single conversation. Sigh!

This has nothing to do with the Sindrel Song testing, which is very much my focus at the moment, but it's something that's come up unexpectedly this week and left its mental mark on me, impairing progress. It's why it took me days to make some fairly simple changes to the beta version, and why I've yet to reply to some comments despite being eager to reply when testing started (I have been reading them all, though). I feel bad about that - and about this! - so here's a post about it.

While having radiotherapy at the start of the year, I talked with the cancer doctor about how my mental health issues impair my life more than the cancer itself. I think it came up in the context of seeking government benefits for being disabled? That's not a path I'd ever thought about going down before, but it was suggested to me that maybe just having cancer would mean I qualified for it, and that it'd be better to have *some* kind of income, even if it was a pittance. It's not like I could get a job while recovering.

So I applied for that, months ago, which involved filling in forms about my symptoms and how my condition affected my life. I was very thorough, talking about all the stupid little aberrant things that no sane person would do, like choosing to starve rather than getting food if the latter involved saying hello to another person, including my own family members. Many strange things.

The cancer doctor referred me to the psychology department at the hospital where I was having radiotherapy, since I suppose there wasn't really much else he could have done. Literally months after the referral, I finally saw a psychologist, who I talked to for about two and a half hours about pretty much my whole life story. I didn't expect or intend to be that thorough - I thought it'd be like a half hour meeting at most - but she was going through a long list of specific questions (many of which were things like "how did finding out you had cancer affect your wellbeing?"), so it dragged on and on.

She's the one who suggested that I might have Asperger's; I wrote a post about that not too long ago.

Sometime either before or after that, I also got a call at my house from someone involved in the assessment of PIP (Personal Independence Payment), the disability benefits. I talked with him for about half an hour about how my condition affected my life (after psyching myself up all morning in preparation for it).

All that happened weeks ago. I didn't hear anything back until last weekend, not long after I started testing on Sindrel Song, when I got a letter from the PIP people telling me whether or not I qualified. How it works is that there are several components for things ranging from being unable to read to needing help wiping your own bum, and you had to specify how much you struggled with each particular thing, for which you were potentially awarded a certain number of points. Your total points decides how much - if any - money you get. Most sections weren't relevant to me because I'm not typically handicapped, but there were some for things like leaving the house or interacting with other people, which I had a lot to say about. The descriptions suggested an awareness of how anxiety works, too, as they asked whether you experienced negative effects before, during, or - importantly - after anxiety-provoking events.

Anyway, long story short, the letter I got said I scored 0 points on everything. It was accompanied by a written description, ostensibly by the guy who 'interviewed' me (though it was signed with a woman's name), explaining why those points were given. It said things like "you were dressed appropriately" (I was in my pyjamas), and that I said I had issues with this and that but "I did not feel that you would have issues with [those things]". It also said I came across as generally socially competent and as such clearly my issues weren't crippling.

SIGH, I thought, reading that, and it's been swimming around in my head ever since. The frustration of judging the entirety of someone's experience based on a single, extremely tiny slice of it. A situation, too, where what I'm phobic of wasn't even present. It was like assessing whether or not someone was arachnophobic after talking to them for ten minutes in a cafe, no spiders present.

My condition is essentially a social phobia, so talking to this stranger should have provoked it, right? It's more situational than that. It's not that I'm completely incapable of talking to other people. I've spent years obsessing over what exactly is wrong with me. I did a psychology degree because of it. I make games based around it. "What's wrong with me" is probably the topic I feel most confident about and most able to talk about. So when someone's asking me about that, it's a rare, rare situation where I do actually feel eager to speak up and explain as best I can. I'm fine in those formally-defined situations where I'm expected to talk about these not-exactly-socially-acceptable things. Relatively, at least. But the thought of having work colleagues terrifies me. The thought of having work colleagues who invite me to join them for drinks at the pub - or deliberately not invite me while inviting everyone else - makes me want to escape via suicide.

If I had a broken leg, I could have shown that. But mental issues are often invisible, and their severity comes and goes, or it's situational. I wasn't shaking, on the verge of tears, fumbling fretfully with my hands and staring at the floor. Maybe if I had been, then I might have 'looked mentally ill' and been more accurately assessed. It's annoying. I imagine many people just put on a show for that reason, but I didn't want to be dishonest.

I try hard to come across as 'not a bother', when talking with another person. I want to look like I'm knowledgeable enough that I can use that knowledge to make their life easier, so then their horrendous encounter with me can be over more quickly. I want to hasten the relief of my absence. And if I don't act absolutely repugnant, there's less reason for them to judge me. I just end up torturing myself about my 'mistakes' during the conversation afterwards. But obviously they don't see that.

The main reason this bothers me is because my inner demons have ruined me, and to essentially be told that no, I'm fine, despite my whole life experience being to the contrary, based on such a cursory, superficial assessment just feels so... like I'm misunderstood. Like it's wrong, unjust. Something like that. But as well as that, not being awarded money is concerning too. I never exactly wanted to leech money off the government, and I'd still rather not, but I'd been keeping that at the back of my mind for if this games thing didn't work out. A security net. But now I don't have that, so it puts more pressure on this games thing doing alright, gives me more fear about the future. My mind runs away with it, starts imagining me being homeless, wondering when I'll have to commit suicide for lack of options. Five years? Four?? Less???

That led to a lot of thinking about my current life situation. I've been living with my parents since I had the surgery about six months ago. They're overly supportive, probably enabling, if anything, and have said I can live here as long as I need to. I can understand their reasons. I didn't live with my mother until the start of my teens, and I think she blames herself for me turning out the way that I have. I get the feeling she's grateful of the opportunity to look after me in some sense, to feel like she's at least doing something to make up for it all. We rarely talk, but she's been bringing me a cup of tea every night, even making small meals for me sometimes. I never ask for it, and I feel like I'm not being all grown-up and independent by accepting it, but I do because (I hope) it helps her to do something for me. Plus it means I don't have to neglect my own bodily needs while being too afraid to leave this room, like the grown adult I supposedly - horrifyingly - am.

It got me thinking recently about the ∞ five love languages ∞, which I encountered a few years ago. I use and need words of affirmation and quality time, in that order, but I'd say her main love language is acts of service. She's never hugged me, and conversations between us are rare and often frustrating (she interrupts constantly, doesn't really listen), but she's always done things for me. I suppose the incompatibility there explains a lot, actually. I never learned to do a lot of things by myself because she'd do them for me instead, but I always felt alone and unheard. We've talked about that many times, about how I just want someone to listen when I vent sometimes, but it never seems to click. To her credit, she's tried in recent years to be there verbally - she used to ring me when I was having a miserable time at university - so I do try to appreciate that, at least. But I suppose she struggles with that in the way I'd struggle with acts of service (often I worry I come across as rude or selfish because I don't do things for people; I feel in my element being a shoulder to cry on, though).

And my step-dad... I thought he'd hate the idea of me living here, of not growing up, but he's always taken his own path through life, and seems to admire me for doing that myself rather than going down the ordinary nine-til-five-wife-and-two-children route. Largely because he thinks I'll make millions and he'll be able to spend it all on sports cars, though.

They're both 60 or 61 or something. They both work, but the other day my mother spoke of retiring in the not-too-distant future. Will they have retired by the time I move out? It's an unpleasant thought on many levels. Will they die before I ever get to live? How would I cope with that, both practically and emotionally??

I have really mixed feelings about this situation. If I'd been forced to get some mediocre job to pay the bills, I wouldn't be able to spend my time making games. So I'm incredibly grateful of that opportunity. I feel I can do something that means more to multiple people, rather than just scrambling to stay afloat with a job I'd got just for the sake of paying bills. My parents are both supportive and kind to me, as well; I feel safe here. But I'm aware that the cultural view of adult children living at home is far from flattering. It embarrasses me every day thinking how close I am to that stereotype of the physically-but-not-mentally-grown manchild living in his parents' basement, wasting his life away playing video games. Pestering them for 'tendies' or whatever the memes have evolved into these days. It's interesting that that stereotype has been around a while - I've seen things from the early days of the internet, or even before, where it was widely recognised - but I imagine it's becoming more common as a life situation these days, what with all the housing costs and mental illness and etc. "Adulting" being tough and all that. Millennials failing to launch because their upbringing has poorly prepared them for the world.

I always assumed I'd have things figured out by, say, age 25 or so... as I think I've said a few times before. I always hoped I'd find ~the girl of my dreams~, and then we'd live together. So I'd go straight from living with my parents, to living with some other person I could be dependent on in some way. Looking back, it's an embarrassing way to have thought, but I suppose it's the fairy tale we're all brought up to believe, and I was so sheltered and idealistic that the reality of life didn't knock it out of me for a ridiculously long time.

It's only recently that I decided I'll never find someone, and found peace with that... so now I'm very ready to move out and live alone. It's just money that's the issue now. And I really don't know how well this games thing will go, or what I could do if it doesn't work out.

Anyway, I got those zero-points PIP results last weekend, and they've been taking up more of my thoughts than I'd prefer. Today, though, I got another letter, this time from the psychologist (or whatever she was) who I talked to for two and a half hours. She'd written out a long assessment of our conversation, and I was impressed by how many minor details she'd recalled (though maybe she recorded and reviewed the audio, I don't know). Rolled my eyes a bit at how bluntly matter-of-fact a lot of the ~tragic~ things were though. It seems like she'd abandoned the autism assumption, but instead said what I had was very likely social anxiety disorder.

∞ Here's a thing ∞ that talks about the differences between social anxiety disorder and avoidant personality disorder. Essentially, AvPD is to (the comically acronym'd) SAD as Charizard is to Charmeleon (Charmander is 'normal' social worries; I've talked about all this before). I think that I have AvPD, not SAD. If it were 'just' SAD, then I'd probably be living a relatively ordinary life, but struggling sometimes because I felt anxious when, say, mingling with strangers or doing presentations. As it is, AvPD has essentially trapped me like a prisoner, denied me a meaningful future, burned so many bridges. It makes trivially 'easy' things impossible or scarring. I haven't been out for a walk in days - despite unusually lovely weather - because there've been workmen working on a house across the road. I know it's insane.

I mentioned that I suspected I had AvPD to that psychologist multiple times, including right at the start of our conversation. It seemed to fall on deaf ears, go completely ignored. Mid-way through, she looked up AvPD on her phone; she didn't seem to have any familiarity with it. Fair enough; maybe it's rare, or people with it don't venture out often enough for people in positions like that to get familiar with them. Her specialty was talking to probably ordinary people expressing distress about their cancer. At least an hour and a half in, she said "this sounds like social anxiety", to which I said yes, it is, except it's more than that. That AvPD is essentially an extension of SAD, blah blah blah. Again, it seemed to be disregarded. I do understand, though. If I were in her position, I'd trust my judgement and experience, not the other person's self-assessment.

It's so irritating, though, because she talked in her letter about getting me various social anxiety treatments like CBT, group classes, etc. I've tried all that. It feels like I'm going around in circles. I'm not saying I'm set in my ways and I'm unwilling to give it a go. I'll go in with an open mind. But I feel like someone with clinical depression being told to go to grief counselling or something.

Speaking of which, apparently I don't 'look like' I have depression. Another irritation. Because I was able to compose myself for a single meeting, despite that meeting being the only one I'd had in weeks, and afterwards I immediately changed back into my pyjamas (or even hadn't bothered to change out of them when the guy came around to my house), apparently I'm fine. Again, interpreting an entire story based on a snapshot. I'm not so depressed that I can't get out of bed, but I've spent the better part of this week - when I should have been adding finishing touches to Sindrel Song or replying to feedback - feeling like I'm a lead rock on the border between waking and sleep, heavily empty, devoid of passion or focus on pleasure, mind full of memory barbs and the usual eye-rolling suicidal ideation. It's hardly *normal* functioning. But no, because I wasn't slumped and bawling at these strangers, I'm fine!

SIIIIGH. Apparently I can chase the PIP thing, apply for an appeal, but the whole thought of that horrifies me because of the very condition I applied because of in the first place. I don't know if it's worth it. Maybe I need to use it as a sign that I need to try harder to make my own money. As if I'm not trying my hardest, even though I am...

Sorry about the venting post right in the middle of the testing for this game. I'd really rather focus on that, and I intend to, but this has been a distraction for a while, so I hope that just getting it all out will help me to actually regain some proper focus.

I'll keep updating the other post (which has over 100 comments now!!!) with updates and things as I make them, and reading feedback, but I'm not going to push myself too much, so I don't know how quick with it I'll be to add things or reply. We all have our own lives though, so I'm expecting it to be weeks before all the testers finish, if we even get to that point at all!

Now to post this and worry what it makes people think about me!