Problems with being Socially Anxious

I don’t do people. I don’t have a massive problem with them or anything, although large crowds tend to set shivers down my back and have me watching over my shoulder every now and then as though someone is about to run up behind me and plant some sort of: “I look really stupid, please laugh at me” sign on my back. 
Pictured: My trusty shield, defending me from imaginary “kick me” notes for a good decade or so.
It was once an indispensable part of my wardrobe. 
But largely. I can manage. I can walk next to people without freaking out. I might even make small talk with other parents outside the school gates after I’ve “known” them for six months or so. Heck. After the Girl had separation anxiety and used to go, screaming, into pre-school every day, I perfected the: “Oh well, it’s just a phase,” line as I forced a smile onto my face while walking past all the other parents with their not-screaming children, hoping that they weren’t judging me, mocking me, or despising me for being responsible for such a noisy child. (And thankfully the Girl has gotten over her own anxiety and is quite happy in the mornings now.)
I will readily admit that as much as I try not to label myself, the terms “shy”, “social anxiety” and “people phobia” spring readily to my mind when I think of my personality, along with somewhat more stigmatising terms such as “recluse”, and “social pariah”.
For the most part, I live my somewhat solitary life more vicariously through the internet. Here, at last, I am free, cut loose from my anxieties because no one can see how my forehead contorts with nerves as I post on forums. No one knows that I sit for five, ten, fifteen minutes with my mouse hovering over “reply” – all they see is TottWriter, a name on a screen, sounding confident, opinionated, bold. Even if the name does post somewhat infrequently.
Parenting puts a bit of a dampener of that shield, however. There’s the school run, for starters, And while it’s less daunting in reality than lots of forum topics would make it out to be (I’ve yet to see the parents actually divide into tribal formations, taking out the weaker specimens for sport), it still involves a degree of social interaction which I flounder on at times. Left to my own devices I would walk alone, stand alone, collect my children and flee, feeling pangs of longing for the parents who natter and gossip with ease, but knowing it’s not for me.
Then, the Boy went and made friends, and suddenly we have a group of people to walk to and from school with each day. I’ve taken to calling bedtime “The Gauntlet” due to its somewhat challenging nature, but my true gauntlet runs twice a day, at starting times of 8:20am and 3:00pm. Here is when I am tested – when I smile and make small talk, all the while noticing every pause before someone replies to me, every time people don’t hear my remark and talk over me, every time I am three paces behind the main group instead of one or two. Every occasion where the other parents are meeting up outside of school and I am not, when a grudge or conversation is discussed in which I had no part. 
In short, every time I feel that little bit more invisible than the others, when I start to worry that my mask of confidence has slipped and people can see me for what I am – an outsider, desperately clinging to the pack for my children’s sake and out of loneliness.
I know I don’t belong there, in conversations about nights out, fashion, and men. I’m none of those things. I stay in, I have never been fashionable, and I am currently coming to a full realisation that I am far closer to asexual than allosexual. I don’t fit, and I never have. 
The problem with being socially anxious is that, even though I know that no one “fits” a group perfectly, instead of finding the common ground and building friendships. I falter at the first hurdle, and spend years berating myself for that failure, for “getting it wrong”, for standing wrong, dressing wrong, staying quiet when I should have talked, or babbling when I should have been quiet. It’s that I over-analyse every mistake I make and let it cloud my social interactions in the future, and although I no longer wear a rucksack and a mid-length coat to defend myself from other people, I still feel like I need to don armour every time I walk out of the house.

What a difference a day makes…

So. Maybe I’m about to embark upon a rant full of self-pity and unwarranted entitlement (I’m sure there are people who would assess my situation as such, so I figure I should get the warning out of the way). However, I think this is something I need to say, because the situation I’m in isn’t one that is faced by me alone. It’s something facing thousands, and in the spirit of Bedding Out I’m putting my private self out there because it’s something not many people see. And maybe they should.

I have epilepsy. I also have dissociative seizures, which are also known as “non-epileptic seizures” “psychogenic seizures” “non-epileptic attack disorder” or whatever other flavour of the month name is going around, seeing as it’s something which doesn’t actually appear to have a universally recognised medical name just yet. (This is something that is oh, just super helpful when it comes to trying to manage the condition by the way.)

I’m writing this because I just got my DLA renewal form through (well, it was actually a week or so ago but other family issues intervened), and while I seem to have struck the lucky jackpot in that I fall into that thinnest of margins where I don’t transition to PIP just yet, I’m also struck by how badly my current postition sets me up to claim DLA at all.

The Dreaded Form

I’ll say now, my health has not notably changed from when I first made my claim in 2009 and was awarded medium care, low mobility. I’ve had my ups and downs, but hey. I didn’t notify the DWP when my seizure frequency skyrocketed and I was having them multiple times every day. I managed with what I had, and I didn’t want the stress of filling that out because, hey, while I was worse I also know that I fluctuate and eventually they’d settle back again. I’m not out to get every penny I can. I just want to be able to live.

So. Here I am now with the above forms in front of me. Back in 2009 I had help from my local CAB filling out the forms. Navigating them is daunting and intimidating. The single-purpose form covers such a vast array of illnesses and disabilities that you start to doubt you’re entitled to it at all when you’re dutifully replying: “No, I’m fine with this” to the majority of the options. Given that the dissociative portion of my seizures are strongly correlated to stress, it’s not the most productive way to manage my health.

This time though, I appear to have fallen prey to the CAB’s drastically reduced funding. I called my local centre yesterday and was told to call this morning and make an appointment, preferably in the first half of the week if possible as they only have one person who is a benefits specialist. So, this morning, at ten o’ clock sharp, call I do. Unfortunately, today’s advisor brusquely informed me that whoever it was I had spoken to yesterday must have been mistaken, that the only way to make an appointment now was to go in person to a different access point in town, but that there was only one appointment left for the remainder of the week, and really I ought to just fill out the form myself.

I explained that my disability is a fluctuating one and that I have difficulty in knowing how best to fill in the details to convey how it affects my life, to which I was told simply that I should fill it out from the perspective of me at my worst.

At my worst, eh?

At my worst, I lie on the floor, unable to move or speak. I sometimes convulse, and crash into whatever is around me – be it a wall, the floor, worktops, armchairs…I’ve hit them all before now. Last week, my adrenaline spiked before the seizure started and I randomly kicked the sofa before staggering out into the hallway and toppling over, landing hard on the side of my head and my shoulder. My neck is still stiff and sore from the muscles I pulled with that awkward landing. I can’t communicate, sometimes I stop breathing for 30 seconds at a time, and when my eyes are open they are usually unfocused or rolling around in their sockets.

In short? I’m pretty darn incapacitated. So I should be a shoe-in, no? No.

The trouble is, the form doesn’t actually ask: “How bad does it get?” It asks how often you are unable to do things such as: use stairs, walk, talk, bathe yourself, or cook. It mentions that it can’t factor in “any problems you may have walking on steps or uneven ground” (Page 12 of the form). I mean, seriously? Just before I have a seizure I probably could manage to walk across a flat surface and only look a teeny bit intoxicated. I’d probably fall down a flight of stairs though, or trip over my own feet on a ramp. Just after a seizure, even the slightest incline may as well be a mountain.

That’s just one example of many. The other problem is that my heath is wildly unpredictable. Some days, hey, you know what? I could run a race, I could climb a tree, I could do all the things “normal” people do. Heck. Some days I am the picture of a fit and healthy, fully able human being.

Some. Other days I wake tired and never lose that exhaustion. Other days I start off with a seizure and the grogginess never goes away. Other days I am all well and good until I just keel over with little warning. Other days I get auras that last hours, filling me with drowsiness or shivering fits or bouts of depressed or paranoid moods where I am convinced the world is better off without me and anyone who claims to like me or love me is putting on an elaborate act so that they can better stick the knife in later on. Some days I have to force myself to eat, to drink. Some days the thought of going and having a shower, or getting dressed is just another arduous obstacle to overcome.

And then there’s my children. No matter what I have to make sure they eat and drink and are clothed. In term time I have to make sure my son (and as of September) my daughter get to school and pre-school respectively. I’ve had seizures in the kitchen where they’ve both stood watching me, complaining that I won’t get up. A couple of weeks ago my daughter insistently pushed her cup into my hand because she wanted a drink, and when it fell out she pushed it back in, harder.

I keep a stock of frozen ready meals and microwaveable tins like baked beans for when it isn’t safe for me to cook their dinner on the hob. I drill into my son and increasingly my daughter that they are to stand back if I am lying on the floor because it’s not safe. If I feel a seizure coming on I’ll put on a DVD for them and quietly go into another room so that they’re occupied. I hate that they’re occasionally telly and computer addicts but I’m also relieved because I know that if I’m going to be out of action for ten or fifteen minutes they won’t even notice because they’re absorbed in what they’re doing.

I’m recently a single parent, too, so I have to get on and do this by myself. It’s impractical to spend my DLA on someone coming in to help me, because I don’t know when that will be, so instead I spend it on the more expensive instant meals and not buying in bulk so I can ferry it back home by hand. On getting taxis to places, on the difference between scraping out an existence shut indoors and a life where I can be free of the stress of making that last few pounds stretch until the next payment. On knowing that that lack of stress means I won’t have so many seizures, so I will be a better and safer parent. On cable TV so my kids have something to watch when I’m on the floor.

Will I manage if I lose the DLA? Yes. I’ll have to, really. But it will mean cutting back. It will mean I go out less, and I will probably eat less, and buy clothes less. It will mean sitting in the dark more to cut down on electricity, and showering my children more swiftly so the bathroom light and extractor fan don’t run as long. (I don’t have a bath in my apartment as it is a health hazard for myself and my children.) It will mean asking for more help. I’ll confess to being proud. I’ll confess to wanting to be independent and not have to ask for help all the time. I want my children to see me at my best, and I want them to grow up knowing they can do anything, be anything. I hide my seizures from them where possible – drag myself through the motions when I feel like collapsing exhausted, and make it to that golden moment when they’re in bed and I can flop in the living room and let down my mask of normality. I try not to snap at them when I am weary to the bone and just want to sit with my head in my hands.

Every brown envelope, every test and hurdle from the DWP makes me want to cry, because it threatens to rob me of the strength to keep up that mask for my children. Breaking down my mask for the DWP makes me question my ability to care for my children. After all, for all I do, I still have seizures. I still collapse at times, and every now and then a friend has to collect my son from school because I can’t get there to pick him up. It’s not about dignity. It’s not about pride and having nice things. It feels personal, a cutting choice between getting support and feeling like a competent mother.

At my WCA the assessor asked me how I looked after my children if I had seizures. I felt like the worst person in the world.

Guilt

I don’t like thinking of myself as disabled. I try not to, as far as possible. So the times where it’s unavoidable prickle all the more. I don’t like the fact that, some days, I have to go and have a lie down just four hours after getting up because I’m having an aura and bed’s the safest place.

I don’t like the fact that M misses out on going to groups, just as O often did. I don’t like the fact that I often injure myself while shaking and thrashing (I had a nice red mark on my forearm the other day). I hate (with a fiery passion) the fact that W spends his days watching me for the moment when I start acting differently.

I can live with the seizures. Well, I have to. No one’s found a way to make them stop yet, and even the CBT guy said they couldn’t guarantee it would put an end to them, only that it was very likely to help. I can even live with occasionally beating myself up; pulling my own hair, scratching myself, throwing limbs into furniture, you know. I managed to wrench my arm yesterday, which was a new one. For one brief, painful moment it felt like I was dislocating my shoulder. I tell you what, that really hurt.

Still, it’s not a lingering thing, like the guilt. Guilt’s a funny old thing really. Rationally – of course – I know it’s not my fault and that there’s no need for it, but then rationality doesn’t really feature much in any human emotions. When my seizures affect W, O, or M directly, I feel guilty.

It was one of those brief windows in which I was alone with O that I feel most guilty about at the moment. I started having a seizure. W was upstairs with M, and it came on fast enough that I couldn’t call up. I staggered over to the sofa and slumped onto it. I think my arm fell over my face a little. I could see, but not very well. Now, the amount of time this took is still very hazy, but I do know that for a while, O didn’t notice. The TV was on, he’s normal child, of course he didn’t.

When he did, he came over, and I think he told me to get up. He told me something, at least, and of course, I couldn’t reply. I remember him peering at me, looking into the gap I could see out of, and frowning. Then he said, quite casually, I must add: “Maybe she’s dead.” He repeated his opinion that I was dead a few times, with different variations. I can’t remember it particularly clearly, but I do recall that at one point he remarked that daddy would have to take me away and make me not dead any more. So I take comfort in the fact that his idea of “dead” and mine don’t match entirely. Eventually, he held my hand and sat in front of me. (Not the safest place for him to be, but I wasn’t able to tell him that.) I managed to squeeze his hand, much in the same way that I signal to W that I’m okay. I’m still not sure how much he understood, and how soon, but he did let go in the end, and after another effort in which I managed to point upwards, ran to the bottom of the stairs and called for W, saying that I was having a seizure.

Now, for a boy not yet four years old, I don’t think he did badly. In this situation the crap one was, let’s face it, me. I can see the funny side of it, of course. I mean, he didn’t at any point seem particularly traumatised by it. At one point, in a complete monotone, he said: “Oh no, she’s dead,” and promptly prodded me in the arm. (After all, what are dead people for?)

Still, much as I am comforted by the fact that he hasn’t been traumatised by it all, I really wish that sort of thing didn’t happen. Ever.