“Diagnosed as a ‘mood/food’ disorder”

"Diagnosed as a ‘mood/food’ disorder"

If I had known about how girls and women present with Autism, would my life have been different? It’s a question without a definite answer, but my hope here is to share my experience, with the benefit of perspective, and hopefully someone out there reading this may find the start to their own answers. While you read this, remember that human beings are not cookie cutters, everyone is different. There were lots of different factors that lead to my diagnosis and others may experience similar or different situations.

We’ll start at the beginning… When I was around 14 years old, I had an eating disorder that they diagnosed as a ‘mood/food’ disorder. At the time, I was aiming for anorexia so let’s call it that. 

At school I was what you would traditionally call a high achiever but never showed results, I wanted to fit in but couldn’t and no matter what I did, my mental health was never up to scratch. I’d tried everything to feel ‘happy’ but nothing seemed to work. 

Sitting in my English class one day, discussing what we’d do our presentations on with another girl, she decided on eating disorders.  In an attempt to ‘fit in’ I decided to do the same. This was one of the worst mistakes I could have made. Fast forward a month or so and I’ve glorified anorexia as a way to be in control – a way to get people to listen. In my head, if I stopped eating and became so thin, I disappeared, my problems would be all over. I obsessed over these words, repeating them again and again. It became a comfort, an anchor to my reality.

At the beginning I loved it, I was going to a free councillor at the time through school and I wouldn’t tell her the whole truth of my habits but little snippets. Again, that ability to feel control, my rule on a world that now made sense.  As a result, even though I was stick thin already, I was losing even more weight. My cheeks were concave, as was my stomach and considering that I was empty, I didn’t feel it anymore. 

Then one day, I confessed to the councillor that I’d not eaten anything yet that day (the time being about 3:20pm) and I didn’t intend to eat either. I don’t know why I decided to tell her that. Maybe deep down I knew I had lost control. One call to my Mum, another to my Doctor and that was that. Lots of talking, lots of listening but thankfully, not much waiting. 

I remember walking into the eating disorder clinic and picking up a Banksy book. It had all of his artwork to date in and from then on, once a week I would sit and memorise the pictures while I waited for Dr Shiv. To this day, that book still sits on my bookshelf as a reminder of how far I’ve come.

Dr Shiv was incredible. Without him I don’t think I would be here today. Not only did he help me, but he helped my parents too which I am incredibly grateful for. There were still a lot of breakdowns at mealtimes, skipping meals when I thought people weren’t looking, but all of a sudden, people were looking. At home my whole family were working together. At school my friends were bringing in extra lunch and talking me into eating it every day. 

Over time I thought I was ‘cured’. Thinking that you can cure an eating disorder and not have to think about it ever again was naive and an all-too-common misconception.  Ongoing research has shown that people with previous eating disorders are significantly more likely to relapse for a variety of reasons, big and small. For this reason, you should continuously check in with yourself or loved ones you know have suffered. 

So, I went on with my life, still not great but better, still something missing – like I couldn’t find the last piece of the jigsaw puzzle – if you know, you know. Every now and again I would google things like bi-polar disorder or autism or even split personality disorder.  At that time, mental health was starting to gain traction in the public consciousness, but this doesn’t happen overnight; there was (and is) a lot of stigma around the conversation. So, I googled, partially self-diagnosed and looked to WebMD more than an actual medical professional. Something that is all too common and largely gives all the wrong answers.

Circling back on that concept of recovery from eating disorders being a constant work in progress that we can relapse at any time – for me it was when I was 19 and my Nana died. She was the type of grandparent who always had time for you. Despite there being 13 grandchildren, you always felt important. I didn’t cope well with her death, why would I? Before I knew it, I was relapsing. Off I went to the eating disorder clinic yet again, but this time was different. I sat in the chair and the lady explained that everything was a lot different now because I wasn’t a child. She scared me if I am honest and I didn’t want her help so decided to go it alone. At that time, I was lucky to get all the support I needed from my friends and family and as I hadn’t been spiralling for long, recovery felt in easier reach.

All that said, and despite the support from my family, after a breakup, I moved away (yep, instead of dealing with my problems I just ran from them) and ended up in a bad relationship. Skip forward a year; it took me fleeing Scotland and that bad relationship to really decide to face my problems head on. 

All it took was a text to my then ex-boyfriend (you know, the one I broke up with and then moved away) and here we are – married with a beautiful 3-year-old. 

Anyway, rewind a bit for context – In October 2016 we got engaged and, in the November, I became pregnant (but didn’t know until Christmas Eve – quite the surprise for all). 

Due to other health problems, I have always thought I couldn’t have children. One day, during a routine Gynaecology appointment, the doctor introduced himself as head of the fertility clinic, filling in for my usual doctor. He advised me that I could try IVF and I couldn’t quite process the news! The one thing I desperately wanted but had always believed was unachievable. Luckily, 3 weeks before our first round, I found out I was pregnant naturally. I couldn’t quite believe it (though I had been feeling sick for some time). I booked a doctor’s appointment straight away. Throughout my pregnancy they asked me about my previous eating disorders a lot. I brushed them off, telling them I was fine, and I wouldn’t mind how my body looked after having the baby. Without realising, I’d started to spiral. 

We had already booked our wedding venue before I knew I was pregnant and paid for other deposits, so decided to go ahead. Who doesn’t want a 6-month-old at a wedding? I’ll tell you who…. everyone. Don’t do it to yourself. It was so overwhelming that he cried all day and when we had a big family photo with my husband’s immediate family (16 of us at the time), we forgot to wake our son up for the photo so he’s just missing….

In the lead up to the wedding it was hectic. I hadn’t had a good birth and both my son, and I were quite unwell. Again, without even realising, I had relapsed, and my eating disorder had evolved. I was skipping one or two meals in a row and then binging until I physically couldn’t eat anymore. I was stuck between people pressuring me to lose weight before the wedding (as they do) and actually, for once, loving my body because it had bought me my son. Because of this, my weight was fluctuating which made it a lot harder for my family to pick up on. If ANYONE tells you to lose weight before your wedding…or ever…have a serious think to yourself about how you feel about your body. Then question whether to tell that person where to shove it; especially if you’ve suffered with eating disorders. Fortunately, I came to my senses and off I went AGAIN to the eating disorder clinic. There I met my councillor Kerry. 

Like before, I sat there and gave some background to my problems. After about an hour of her asking questions and me answering, I said to her ‘I feel as though there is something wrong with me, but I can’t put my finger on it. I Google bi-polar and autism, but they don’t sound like me. There is something but I don’t know what it is.’ 

A smile slid across her face and she left the room. Minutes later, she was back with a few pieces of paper that had different statements on it i.e., hyper empathy: where someone is very sensitive to things that don’t necessarily affect them; like watching a video of someone who is sad and mirroring those emotions – something like this can affect me for days. Because of this, I have to avoid the news, be so so careful what movies I watch and most importantly, what music I listen to. She asked me to put a tick next to the statement I felt applied to me when I was younger or now and I ticked 30 out of 40. 

She went on to talk about how males and females with autism present so differently but most research has been on males and therefore, if you’re a female looking at symptoms and thinking, ‘nah that’s not me’, then it’s because they just aren’t the right symptoms. She explained that females at the high-functioning end of the spectrum often camouflage their symptoms for example:

  • Reading body language and then imitating it 
  • Forcing yourself to make eye contact 
  • Always trying to achieve more

It was a revelation. All of these – tick, tick, tick. I had all of these but just didn’t realise that no one else around me did.

There are so many other things that we do to camouflage, this is maybe why there is a link between women with autism and having an eating disorder. I have always been fussy with food – dubbed a picky eater when actually, it was the texture of foods and them touching one another. Those god damn peas NEED to be in their own bowl! 

Another thing I didn’t realise, is the impact of something like this (and the lack of knowledge around it) on people in your circle. When I told my Mum, she felt pretty guilty that she hadn’t picked up on it. Could she have saved me from some pretty rough years growing up and being a teenager, or heck…even when I was an adult? Simply put, no she couldn’t. It wasn’t her fault and it’s not mine.  I was camouflaging and especially back in the 90’s/00’s, there was even less information on girls with autism. It’s also a way of life, not a disease. I would have still had sensory overload and all of the other issues we go through with autism.

However, being diagnosed as an adult, in some ways, I am grateful for. I was able to fully understand my life for the first time and answer the many questions I had about…well, everything. 

As an example – did you know, when you’re sitting there, people watching, most people are just being nosey and want to know what other people are doing?? My Mum and I used to do this for ages, we loved it! The only difference was that I was looking at them and trying to understand their movements, body language, facial expressions and my Mum wasn’t. This BLEW MY MIND. Realising that other people just understand these things and I don’t is incredible. Maybe you can relate, and that’s totally okay. 

I now understand that my eating disorder and autism are things that are current and will be for the rest of my life. I’ve made the pledge that every single day I will check in with myself, make sure I don’t skip a meal, make sure I’m not weighing myself daily. You’ve likely heard it before and will again but that doesn’t make it any less true – these things are a part of me, but they do not define me. Always seek help early on and don’t ever feel like it’s your fault. You’re only human and you’re extraordinary. 

Tillie Graves

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