Positive Reflections on Hard Times

My sister is three years younger than me and she’s just begun the school year that I was in when things really went downhill for my mental health. It’s one of the many things at the moment that is making me really reflect on the times I went through when I was her age.

It’s been weird the way I think about it. Having left school a year ago and so many things happening inbetween has given me a huge deal of distance between myself now and my breakdown. For the first time in a year, I’ve spent the summer not having at least a while every single day where I think about my breakdown – those days I didn’t get up, the anxiety that physically hurt me and the mind set that it was all fine. But when I do think about it now, it doesn’t hurt so much.

For a short time, I was internally angry with myself for having a mental breakdown, which is ridiculous. But it still happened. I was angry that I didn’t do as well as I could have done at school, I was angry that those years felt wasted and I was angry about the impact I’d had on my family. It is ridiculous for so many reasons, I can’t do anything to change it now. The most prominent reason, though, is that I wouldn’t be here – as happy as I am about everything in my life – today.

My mum always says “everything happens for a reason” and I think everyone is guilty of just saying “yes, mum” to things like that and moving on. After nearly 18 years, I’m not sure why I don’t listen to her all the time because she really is always right.

If I hadn’t had my breakdown and burnout, I would probably still be so unsure of myself, having meltdowns and hating myself for them instead of understanding, letting them happen and moving on. I’d still be autistic – like I was for nearly 16 years – without that diagnosis, I just wouldn’t know. I don’t think I’d like myself or have confidence in myself, nearly as much as I do now. I wouldn’t be able to have or appreciate the happiness I have today without having those terrible lows of the past. I probably wouldn’t have a job that I enjoy and love, I wouldn’t be making plans that typical teenagers make to go out like I am now, I wouldn’t have my wonderful friend who supports me and likes me for who I am, I wouldn’t be less scared to give things a go and have new experiences – I wouldn’t be the me that I am today.

Those years, while horrible at the time, created the person that I am today and honestly, I’d rather have a few horrible years as a teenager with the rest of my life in front of me than anything else. I know who I am, I like who I am and while I’m not happy I had those difficult years, I appreciate that they made me who I am.

My Complicated Relationship With Food

Like many autistic people, my relationship with food has been strained at best. It starts with the small amount of generally plain food that I eat, ensuring they do not touch on the plate and extends to the time where I was only eating maybe two meals a day, if I was lucky. Food, of course, goes on to influence body image and I’ve been thinking about it a lot recently. They’re so intrinsically linked with both each other, but also mental health.

So let’s start at the beginning – I’ve always been a ‘fussy’ eater. I think it’s easier when you’re a kid and you go out to eat because every menu had chicken nuggets and chips. As a kid without a diagnosis, you’re a fussy eater and it’s not worth trying new things. I’m not saying anyone is to blame for this, just that it’s not worth the meltdown-that-wasn’t-known-as-a-meltdown for anyone involved.

It wasn’t until I went on brownie holidays and school residential trips that I began to hate food. At home, it was fine. Not a problem, my mum would cook food I liked. But I distinctly remember a trip when I was about 8. It was a brownie camp where I’d been okay with food, finding something to eat from the limited choice that I could just about feel comfortable eating at every meal. Except this one lunch time. It smelt too bad in the canteen area where all of the options were just not in my small realm of foods I liked – the smells were overpowering and was simply not going to find something new. I diverted out of the queue and went to the salad bar, sitting down when my brownie leaders and the people from the camp came over. Obviously, they were concerned I was not eating enough but I insisted I did not want the full meal. They got me another salad that was bigger and multiple slices of bread. I understand, now, why they did it, but at the time – as an autistic person with no diagnosis and not even a vague idea of my identity – I despised it. I was trying not to cry, because I didn’t even like the bread or salad much, I just wanted to get through to dinner time. Every mouthful felt like a huge lump in my throat that made me feel gradually sicker. I’m sure I threw out the ‘I don’t feel well’ excuse about not wanting a full meal. It wouldn’t be the first time. I was desperate to finish up but when I’m not a huge fan of a food, I can only stomach the smallest amount at a time. I was so slow, that I missed the whole lunch break to talk to my friends and almost missed the afternoon activities.

From then on, I had a huge fear of food on school trips and other times I was away from my parents. I’d enjoy the day until meal time, where I would freeze and sincerely hope I’d either like the food or be able to sneak away with only eating the smallest amount. It wasn’t like I had the diagnosis to be able to say ‘Emma’s relationship with food is different, don’t worry if she doesn’t eat’. It was awkward. On a later trip, I distinctly remember saying what, at the time, I thought was a lie to a nosy classmate who asked why I didn’t eat much, I said “I’m just sensitive to tastes and smells.” It’s true, though. Every trip in secondary school consisted of a suitcase of foods I could eat after sneaking away from the dining area, but at primary school this wasn’t really an option. I hated feeling like I was breaking the rules when I ran away without eating anything but it was the only option I had.

To bookend one of my first trips away with the last, we had the final school trip I went on. This was when I wasn’t eating much on a daily basis anyway, more on those mental health issues later, so my mum and I organised a meeting with the teacher leading the trip. I got my mum to emphasise “Emma doesn’t eat much – don’t force her to!” I was less concerned with food then, and enjoyed the trip more as a result. No one was watching me eating, frowning thinking I should eat more. To be honest, three small meals a day was a vast improvement. Although, I did have to stop eating bread rolls for a while, as dry rolls were the only food I really liked there.

Even on regular days, lunchtime was a battle. If you’re at school, you eat sandwiches, right? I didn’t. The combination of textures was a huge no from me, and even these days I don’t really eat sandwiches. I used to dream of being allowed home at lunchtime to have beans on toast or crumpets – any food that I liked. Another problem is that when you eat such a small range of foods, you can get bored before too long. After three weeks solid of dry pita breads, you want something else. So I’d have crackers, but then I’d get bored. The extremes that I think make up autism, to be honest. One way or other. Only eating or entirely bored of eating it.

Like I said, at home I was fine with food. Eating out became trickier because for some unknown reason, in adult meals, they decide to put things on top of each other and add a lot of unnecessary extras. Maybe that’s just me, though. Eating out was an experience in itself. It had to be a restaurant I knew, ordering myself was impossible and if the item I wanted was in a different place on the menu? No chance of a successful evening out. I don’t think people realise how prevalent food is in your life unless you have issues with it.

In the middle of my burnout and significant mental health issues, I wouldn’t eat. It’s not necessarily that I didn’t want to, but I’d forget to or not have the energy to get it. Put it this way: if you can’t get yourself out of bed, food isn’t on your mind. So I spent many days in bed until 4 or 5 pm, having not eaten since the previous evening but not being able to process anything but the fear I had of the world correctly, so the feeling of hunger just wasn’t decipherable. Eating a child-size meal was probably a push sometimes, and it – like the rest of my mental health – had been a downwards spiral for years in the making. My relationship with food was just the most disordered it has ever been. Put the generally autistic I-don’t-eat-many-foods issue on top of a lack of energy to do anything but be anxious and you get a scenario of food being hell. I didn’t even know if I wanted to eat, let alone what.

Naturally, I lost quite a bit of weight and was painfully skinny in areas. My hip bones jutted out of my body so much they looked sharp and my rib cage was pretty much on view. When I got dressed, I drowned myself in big, baggy t-shirts and plain, dark colours that would not draw attention to myself. I’m pale as it is, but not leaving the house left me looking like a ghost, something helped by my permanently anxious expression.¬† There was never a moment where I looked in the mirror and realised how skinny I was, I didn’t have the energy for that. My body had become an unknowing metaphor of my mental state so much so that I didn’t even look in the mirror to find out. My body was not well cared for, inside or out.

I disappeared from pictures for quite a while. Those that do contain me show just my head and most have a smile that barely reaches the eyes, if one at all. I don’t look happy or comfortable in who I am at all and honestly I didn’t feel it. It’s not until recently that I’m at a comfortable weight and wearing clothes that don’t attempt to hide everything about me. I’ve never been super self-conscious about my body but clearly I had been enough so that I tried to hide.

My relationship with food can still be tricky. I remember to eat these days but I still despise the smells of some foods. If they’re cooked in the house, I get a warning and disappear into my bedroom, smelling the strawberry hand cream that covers my hands. I despise sauces – liquids and solids generally are a terrible mix – and my realm of food is still pretty small. Nevertheless, I feel that I have control over my relationship with food. I don’t like it? I won’t eat it. I feel up to trying something new? Go for it, but don’t push your limits. Food is so

much less complex as I’m becoming am adult. Yes, restaurants are still awkward, but I can usually find something – even if it’s just a side order. And the people important to me know my limits. They’re not going to make me eat food I don’t want to. My autistic relationship with food is very much there, but my mental health¬†relationship with food is a lot better.

MEAnd this is me yesterday. Happy and healthy yesterday and the place associated with my longest standing special interest, having been out for food earlier that day and about to try something new.

Happiness

Yesterday, I was in the car with my mum, dad and sister. We were discussing all sorts of things and my sister brought up a lot of questions to my Mum and Dad about the who was the best behaved child and other random memories. We were discussing something that I can’t even remember, a memory that we were trying to place in the history of our lives. I threw out an age, “Was I about 14?”, and her response was profound and honest – “No, it was when you were happy.”

It got my mind back onto something I’ve been thinking about for a long time – the idea that I’m the happiest I’ve ever been. I can’t recall so many days where I wake up feeling okay and when I don’t, it doesn’t knock me back for weeks. I don’t recall so genuinely content with my life and having legitimate aspirations I can try to achieve. My life isn’t completely ruled by my anxiety but I also know my limits , I know when to push that anxiety and when to leave it. Sitting here writing this I just feel happy. I’ve got the highest grade ever achieved on my college work, I’ve got a job – a fulfilling job that makes me excited to leave the house, and I’ve looked around a University and cannot wait to think about my future there.

I’m genuinely so content that happiness is a realistic possibility everyday. I actually want to leave the house and find myself going crazy if I haven’t left the house before work at 3 o’clock. Now I’ve finished college for the year, I’ve started teaching myself further science because my love of learning is back. I’m comfortable with who I am and I don’t want to hide it, whether that’s emotionally, physically or autistically.

And being so happy just reminds me how grateful I am. Grateful to my family, grateful to my friends, grateful to the medication I take. Grateful that I can live life again when making informed decisions based off my neurotype and my mental health. It’s weird to think that I was so gradually unhappy, but I only noticed it when I experienced the biggest amount of happiness. And that’s why I’m grateful. You can never put things into perspective until you experience something else, and I’m just so glad I can experience this happiness because it means that I will never go back to where it was. It’s too much to lose.

 

A Somewhat Incoherent Ramble About Struggling

We all struggle sometimes – and that’s completely okay. To admit it, is in fact, even better. But that doesn’t make it easy to do so.

Things have been rough. My physical health is not great and, as always, it’s taken a toll on my mental health. Being hypersensitive to pain doesn’t help, either. It’s weird because this time of year is usually when my mental health gets better, but it’s got worse. I know it’s just stress. I’ve got a lot of assignments to do and everything’s become a bit too much. I walked out of college the other week as a way to try and cope, I’ve been getting home from college and laying in a dark room for a while, crying and melting down more often and I’ve ordered a weighted blanket to help me sleep better, if that’s any indication of how things have been going.

My biggest struggle at the moment is feeling that I’ll burnout again. It’s maybe my biggest fear. I can’t go back to feeling scared to leave the house and leaving my bed a couple of times a week. I’m not there. And I won’t let myself be there again. But it doesn’t change the fact I’m scared.

I think there’s something scary about admitting to struggling when you’re autistic. We’re often told that our lives are struggles and protesting against this becomes normal. It’s ridiculous but I fear that people will change their ideas about me if I say I’m struggling. Something about protesting that I don’t need curing and that I’m never going to be ‘normal’ makes me feel like I shouldn’t say that I’m struggling.

And that’s exactly why I should.

Being honest about this is important for me, but not just internally. Admitting to myself that I’m not doing well is difficult, but telling anyone else is harder and I wish it wasn’t. The stigma around mental health and autism is huge, and helps no one, and combining them together feels hard and scary to break. It’s not though. That’s why this post is shorter and less coherent than usual, but hopefully, I’ll be back on it soon.

I’m not completely okay, and that is completely okay.