When Anxiety Is The Only Thing On The Menu

I know I touched on issues with food already this week but I thought I’d go into a little more detail so those of you who don’t experience this difficulty can get a glimpse into what it’s like. Food is a massive problem for me; it’s a daily cause of stress. Where am I going to be? Will there be food I can eat? If not, can I bring my own food? Can I get away with not eating or will people notice and point it out? It’s a constant loop and that is exhausting.

As I said in a recent post, I’m incredibly sensitive to the flavour of food; add even the smallest sprinkling of pepper to a meal and I can’t eat it. It overwhelms me and I just cannot eat it. Forget spicy food entirely. So I can only eat the simplest things: plain rice or pasta, unadorned chicken or fish, and so on. I practically live on fruit and vegetables. When there are lots of different flavours, I get overloaded. I can’t describe it better than I did in my sensory sensitivity post: “It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one.”

I’m also very sensitive to texture; there are very few things that don’t trigger my gag reflex. I’m sure all of you have experienced that at one time or another so you can imagine how desperate I am to avoid it. I remember a particularly bad experience with tofu; I’m actually shuddering just thinking about it. I have a similar problem with wet foods touching dry foods. It triggers the same response. So while my family – who are all fairly adventurous when it comes to food, at least from my point of view – flip through a library of cookbooks, I eat simple meals with ingredients that I can separate and I eat them over and over again.

Honestly, I don’t mind that. It’s safe. It’s comforting. It’s the pressure to eat ‘like a normal person’ that’s stressful. Going to restaurants and eating in public is a major anxiety: it’s very rare that there’s something on the menu that I feel able to eat and asking for something simple feels impossible. I find asking for anything difficult and drawing attention to this issue is something I try to avoid if at all possible.

As a child, I was labelled a picky eater and strongly encouraged to try different food. I know that my family and friends were just trying to help me: they were trying to prepare me for a world that would expect me to eat complicated food. But instead of it getting easier, it got harder. So eventually we reached this uneasy stalemate. But getting a diagnosis made a massive difference: it gave people an explanation, made them realise that it was something I couldn’t help. It took the pressure off in a big way. But as important as that is, it hasn’t fixed my problems with food. And as much as I struggle with it physically and struggle to get the right nutrition, it also has a big impact on my mental health.

People make assumptions when they hear how little I can eat. They think I’m being picky or deliberately difficult and see me as an inconvenience. I know that it’s not my fault and that it’s a valid reason to struggle but I find it incredibly embarrassing that I can’t eat like everyone else. I feel like it keeps me from really becoming an adult, especially when so much socialising revolves around the consumption of food and drink. It feels like a weakness; it’s something I’m ashamed of, which definitely feeds into both my body image issues and my depression, as well as my anxiety. When I get really low, as in dangerously low, food becomes even harder and I just lose the will to eat all together.

I vividly remember being about ten years old and reading a magazine article about a girl who had to have intravenous nutrition for medical reasons and I found myself wishing I could have the same, wishing I could not eat because it would be so much easier. And I still relate to that. I would give anything to be in control of this, rather than it have control of me. I wish I could choose what to eat, rather than navigate around the things I can’t. I wish I could eat according to my beliefs instead of having to worry about whether I’m getting enough protein or calcium or whatever (I would love to be a vegan, or even a vegetarian, and often feel guilty that I’m not but health wise, it’s ill advised when there’s already so little that I can eat). I wish I didn’t have to be afraid of blowing a sensory fuse, of getting completely overloaded, which can trigger a meltdown. I wish I could enjoy food. But I can’t and I’m scared I never will.

Living With The Volume Up Loud

I have always been incredibly sensitive, ever since I was a little kid. It was one of the words used most commonly to describe me as I grew up. While it was usually emotional, I was also sensitive to what was going on around me and that seems to have increased over time. I can get overwhelmed by all the sensory information coming into my brain and I end up struggling to process it all. The processing can get stuck or I’ll zero in on one specific thing, like tunnel vision. It can also happen emotionally. The smallest thing can unsettle me and it can take hours or days to come back to myself. When I was diagnosed with ASD, someone described this really well to me: where neurotypical brains can filter out information that isn’t relevant (not ignoring it but not consciously processing it), neuroatypical brains can’t, so all the information comes in at the same volume and overwhelms the brain.

I struggle a lot with noise. Loud, sudden noises, like a slamming door or a fire alarm are very upsetting. It’s like they’re inside my body, inside my head, and before long, I can’t think and my anxiety overwhelms me. If it ends quickly, I can slowly force it back until I can function again but if it continues, it can lead to a meltdown where I lose all control of my emotions and thinking. It’s awful.

When it comes to studying or writing (although not songwriting), I need some background noise, almost to fill the space around me and in my brain. I often refer to the earlier example of information coming in through every channel: if I listen to something familiar, like a well watched TV show or audiobook, it’s like I’m filling some of those channels with something that I don’t need to process because I’ve already processed it, leaving me with only the channels I need to work on whatever it is I’m working on. Having said that, if there are too many different sounds going on, I start to get overwhelmed. It’s like my brain can’t balance them correctly, focussing on one too much and not hearing the others and so on. As you can imagine, that can make playing music quite difficult. I’m finally getting into the habit of carrying earplugs around but that has issues of it’s own: I find the sensation of essentially blocking my ears a difficult one, plus they’re pretty uncomfortable.

I’d never really thought of myself as being sensitive when it comes to touch but the more I think about it, the more experiences come to mind. I’m pretty specific about the fabrics I can wear and there aren’t many things I can put on my skin. It doesn’t take much before it feels unclean and once that feeling sets in, I can’t shake it. It’s horrible. There have been a few days where even multiple showers won’t fix it. I’ve also had some pretty bad reactions to various soaps and make up products, even those labelled as suitable for sensitive skin. The most dramatic example of this was when I was given perfume for my birthday. I love the smell of it but wearing it causes this weird reaction: my eyes water, my nose itches, my throat hurts, and so on. The worst part is how badly it irritates my lips: the skin burns and splits and it can take days to heal. And I don’t even have to be wearing the perfume to have that reaction; I only have to be wearing something I once wore with the perfume. Washing and airing the clothes hasn’t seemed to help much but I’m holding out hope that it will eventually fade.

My relationship with food needs it’s own post (I’ll get there, I promise!) but I think it’s important to mention in this context. I am really, really sensitive when it comes to food, so much so that I can only handle pretty bland stuff. This used to be a big problem because my family is pretty adventurous when it comes to trying different recipes and that often caused stress and anxiety all around. I got labelled as a picky eater and the most common response was to push me to eat the things I didn’t like, assuming that the experience would get better. But it didn’t; I just got more and more anxious around food. But since the diagnosis, it’s been easier. Well, easier to manage. It’s something that people can understand and that has really lessened the pressure on me. Now, the people around me let me decide what I can and can’t handle. I struggle with both texture and with taste and that can make some food impossible to eat. I get so overwhelmed by all the flavours that I can’t taste any of them individually. It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one. And that links into being really sensitive to smell. Something that those around me can’t smell can overwhelm me like a fog. It gets into my throat and my eyes. I won’t be able to focus and often have to leave the vicinity.

There are other things that overload my brain and while they aren’t exactly to do with my senses, they feel pretty similar. I guess they’re based on intuition and it seems that my intuition can be as amplified as my other senses.

Being in a crowd of people also overwhelms me emotionally. I get overloaded with how everyone has a name, a favourite colour, family, friends (who all have names and favourite colours), foods they hate, superstitions, dates they always remember, phone numbers they always forget, movies they quote, and so on and so on and so on. I get overwhelmed by how much is in everyone’s lives and I end up feeling like I’m being crushed by the weight of that. I feel like I can’t breathe. Some days I don’t feel it so strongly but on the days where I feel really fragile, like I don’t have any skin, it’s very, very stressful.

Another thing that needs it’s own post is my reaction to other people’s emotions. I feel like a lightning rod for them, especially the strong ones. I want to write more about this at some point but again, it’s relevant here. When I’m around anyone feeling a strong emotion, I start to feel it too. Most commonly I feel other people’s grief. And there’s always guilt mixed in: they’re not my emotions so I shouldn’t be feeling them. But I can’t help it. And it doesn’t take long for me to feel overwhelmed by all of that.

All of these things become exponentially worse when I’m stressed or anxious which, of course, is when I feel least able to cope with it. I don’t know if it’s something I can change, or whether my brain is wired this way, making everything so intense. Maybe it’s both. Maybe it’s neither.

Christmas and Autism

Christmas and Autism aren’t hugely compatible. Lots of bright lights, noise, high emotions, family, socialising… It can all get too much. It can be a really stressful time. So I’ve been thinking about the past few Christmases and the one coming up and how I can make it restful and comfortable but also enjoyable.

Make sure you have the medication you need – To run out and go into withdrawal (depending on the kind of medication you have) is awful anyway but it’s adding insult to injury to have to go through it during a time that is characterised by its joyfulness. So make sure you know the dates your doctors/pharmacy will be closed and make sure you have the medication to get through that time. Please. If you need any extra motivation, do it for me. You do not need to go through that.

Plan presents with friends and family – I get really anxious about receiving gifts. I always worry that I’m not reacting positively enough, that I’m letting the giver down. I worry that they’ll see a microsecond of anything other than joy and that will upset them. Another anxiety about presents comes from the times when I feel really far away and disconnected from myself, something I often feel at times of high emotion. When I feel like that, something like being given a present doesn’t impact me the way it would if I didn’t feel like that and that brings it’s own myriad of emotions: guilt, frustration, loneliness, etc. I feel like I’m being ungrateful and the lack of personal connection to whatever I’ve been given makes me feel very alone, like people don’t know me. I know that it’s my head messing with me but that doesn’t make the emotions any less real. To counteract those feelings, I’ve started discussing present buying with my family and friends. Asking for things can feel really, really, REALLY awkward but if I’ve learned anything, it’s that talking things through does help. So we talk about that and we talk about what I want and what they want, the more specific the better. It does take out the surprise element but I don’t really like surprises anyway and if you have anxiety, chances are you don’t like them either. For example, for my birthday, the biggest surprise was which poetry book I got from a particular writer. It made the whole day so much easier on my emotions.

Get as much information as possible – I make a point to know what’s going on as much as possible. For me, the biggest anxiety is food so when it comes to the important meals (such as Christmas Eve and Christmas Day – the ones where my family all get together), I make sure there will be at least a couple of things I can eat. I’m lucky because my family are very used to my struggle with food so they do take that into account when planning a meal and that means a lot to me. It makes a massive difference to my Christmas experience.

Space out social events – Obviously there are some things you can’t avoid but where possible, I try and space out the socialising to give myself time to recover and recharge. And knowing in advance allows me to prepare myself, physically, mentally, and emotionally. This makes it a bit easier to regulate my mood. Some things can’t be helped but my aim is to try and keep my emotions relatively even, rather than the tumultuous up and down that they can be, which is exhausting and upsetting.

Try not to beat yourself up about negative emotions – Something I also struggle with at Christmas is this feeling that I’m not enjoying myself enough, like if I’m not ecstatic I’ve somehow failed Christmas. I’ll look around at everyone and they’re all laughing hysterically at some ridiculous Christmas dinner activity (anyone else have those differently tuned whistles that you had to blow in a particular order to play Christmas songs?) but I feel like crying. I’ve had that experience a couple of times and it’s one of the most isolating feelings I can think of. It makes me feel so alone and disconnected from everyone and it’s horrible. I haven’t figured out what to do about this feeling yet but I think the first step is acknowledging it and accepting that it’s there. My plan is to try some of the things I listed in a previous post about connecting to the world around me. I’ll report back with whether it works or not.

Accept the anti climax – I often crash after Christmas and really struggle with the anti climax. That really drags my mood down. I’m hoping that spreading out the Christmas events will soften that a little and I plan to have some fun, gentle things to do to afterwards but again, I’m trying to acknowledge and accept it. I probably won’t be as calm about it when I’m in it; I’ll probably rage against it as is my default these days but I can but try. At the end of the day, that’s all you can do.

When you can’t get out of a stressful event, create a safety net – If there’s a stressful event that I have to go to, I plan as much as possible. I’ll scout out somewhere to retreat to or bring/find a friend who can rescue me if needed. I create a safety net for myself and often it’s existence is enough. It takes off the pressure.

Take the time to think about the sad stuff if you need to – At Christmas, I can’t help but think of the people who aren’t there, who are gone for whatever reason. I miss them, not necessarily more than any other time but in a more obvious way. They are not there at Christmas dinner, there’s a glaring hole in your shopping list, and there’s no present from them on Christmas morning. I think we do a disservice to ourselves and our emotions to push that aside, because it’s a holiday about joy or because it’s too hard. But if it’s something you want to do, you have to do it in a way that works for you. Sometimes it feels right to raise a glass at dinner and sometimes it’s right just to take a few moments to think of them. Sometimes it’s right to flip through photo albums and sometimes it’s right to cry about it. Grief and sadness aren’t things you can do to someone else’s formula. But I think it’s important to take the time to remember and acknowledge the sad stuff, in whatever way you choose.

Ultimately, it’s all down to communication and planning. Planning, planning, and more planning, as always. That’s what I’m learning. I hope this has been somewhat helpful and that you guys all have the lovely, safe Christmases you deserve.

Originally written for Ambitious About Autism. You can find it here.

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