(a)gender challenges

It has again been quite a while between posts on my blog,  mostly because I’ve really been struggling with my gender identity and associated disphoria recently. This post will just be an update of where I’m at with my gender identity and presentation at this point in time~

1. My gender identity
I have been actively trying to figure out my gender identity for about six months now, and it’s proving a real challenge because gender is really not clear cut at all. Like you can’t just tick some boxes, or do a quiz and huzzah! You’re a girl/boy/other. When I first started trying to put a label to how I feel, I would just get really confused and frustrated a lot. I tried looking at others and how they defined and expressed their femininity or masculinity, and I looked at which things I considered to be masculine and feminine things, and what masculine and feminine even meant to me. I “tried out” feeling entirely male, or entirely female for days at a time. Both left me feeling miserable, inadequate and intensely disphoric. I was definitely not comfortable being completely female (by my definition), and yet I really couldn’t associate with feeling male much at all.

I picked out agender as a placeholder label that seemed to fit how I was feeling, but it turned out I’m actually pretty happy with this identity and it only needed a bit of tweaking before it felt almost 100% right. After a few months wearing the agender label (online and in my head. I’m not really comfortable coming out as anything more specific than genderqueer/non-binary if at all, at least until I’m 100% sure of my identity) I realised that while I do very ocassionally feel vaguely feminine (demigirl), I never feel masculine. What I assumed for so long was a masculine side was really just me being drawn to masculine things as a desperate bid for neutrality and escape from the feminine. As I only really knew things as either masculine or feminine, when I was feeling particularly genderless I gravitated toward anything I could find that was just not female.

So I realised that my gender was continuously fluctuating between completely (desperately, painfully) genderless and very slightly feminine (see genderflux).

In summary, I currently identify strongly with three labels:

  • Agender
  • Demigirl
  • Genderflux
genderflux

(from top to bottom) Agender, Demigirl, Genderflux pride flags. Combined symbol of agender, demigirl, and genderfluid.

2. My gender presentation

Presentation is difficult because I’m not really out to anyone as genderqueer/non-binary. I work as an engineer, so I can get away with quite a lot of androgyny but even so, I feel like I need to dress at least vaguely feminine to make a good impression (I’m new to the workforce) and to avoid any uncomfortable questions or judgements that could affect my job prospects. I don’t wear makeup or skirts or anything, but I do wear tight fitting tops.

After a week of presenting as female at work, I usually go all out on androgenous presentation on the weekend for as long as I can. I have a chest binder and a dedicated section of my wardrobe just for clothes I got from the men’s/boys’ sections.

-Most- of the time this arrangement works out okay-ish. But I do get really intensely agender days on work days where I just can’t face being feminine at all, and so I have a few guy shirts/jumpers and a high-compression sports bra for these days. But I do get a few weird looks from people in the office when I do this so I try to avoid this as much as I can…

I’ve had days like that for as long as I can remember, so since I was old enough to dress myself, I’ve always had a small selection of masculine clothes for “feminine relief days”. I didn’t used to get them often though – maybe once every few months. Now that I’ve been focussing on exploring my gender, I’ve been getting a lot. Which leads nicely into my next topic:

3. My disphoria

With my feminine body, my demigirl days are pretty comfortable. I always feel a little awkward whenever I’m around super girly girls (I feel kind of dirty and untamed next to their perfect hair, nails and makeup) but I feel fairly okay just being me.
Then I have days where I am kind of apathetically agender. I think most of my days are like this (maybe 70%) and these days are fine because I’m just like ‘meh.’ I don’t really match how I present but it doesn’t really bother me.

Then there’s the intensely agender days and these days are really really hard. Suddenly, I’m horrified that I have breasts, and I want to completely hide my hips, and when I look in the mirror, I’m horrified by everything that marks me as female. Sometimes I even feel physically sick and my head starts to spin and its like my actual sense of self is just oscillating at high speed inside my head and I think I’ll explode or go crazy. Masculine or gender-neutral clothing on these days really helps, but what I really want to do is just curl up in my bed and sleep/hide/cry/drink. These days are the reason I feel the need to explore my gender identity and label myself as genderqueer, because trying to pretend to myself that I am female on these days would be… really dangerous and scary.

But yeah, I think I’ve come a really long way in terms of better understanding myself and my gender. While it seems like the frequency of my disphoria days is increasing, I feel like my overall self-acceptance is improving and I’m becoming more comfortable with who I am.

Q

Have you had any challenges while exploring your gender identity? Do you experience disphoria or have any advice for managing it? Any other questions or comments welcome~

a grey area of asexuality

Warning: This post discusses general paraphilia, fetishes and sexual deviation. There are no specific details, but if this could be upsetting for you, or is not your cup of tea, please don’t continue reading.  There are also mentions of suicide and suicidal thoughts. Again, please stay safe and exercise discretion. 


A few months ago, I came out as ace (asexual), and I’ve been doing quite a bit of thinking and researching since then to figure out exactly how I feel and where I fit on the asexual spectrum.

For anyone who doesn’t know, asexuality is a lack of sexual attraction to anyone. I will assume that those of you reading this know a bit about asexuality but if you aren’t familiar with it, please read my coming out post, explore a bit around AVEN, or read this article as I think it’s a really relateable discussion on how it can feel to be asexual.

1. Grey-asexuality/ Greysexuality

grey-asexual playing card

grey-asexual playing card

Grey-asexuality is an umbrella term used to cover people who identify pretty closely with asexual, but feel that this term doesn’t quite describe them accurately. This could be because someone does feel sexual attraction sometimes, but it’s usually so rare, or of such low strength that they feel they may as well not experience it at all, or feel that they fit better with the asexual community most of the time.

It could also be because they need very specific criteria to be met, or they need to get to know someone very well before sexual attraction is possible (see demisexuality).

2. My situation

The issue I have with my identity is that I can confidently say that I do not experience sexual attraction to anyone, ever. I’m led to believe this is pretty uncommon in asexuals because, if you’ve never experienced something, how can you confidently say that you don’t experience it? But I can say that I don’t experience sexual attraction to anyone, because I experience sexual attraction to specific circumstances, situations and events. It’s odd – I believe the official term is fetish or paraphilia. (Edit: Check out this great discussion on paraphilia).

I won’t get into specifics, but the issue is, I don’t really feel 100% happy with the label asexual, because I do experience some form of sexual attraction. I also don’t really feel comfortable with the label grey-asexual though, because grey-asexuality still refers to intermittent sexual attraction towards people. My paraphilia involves people by nature, but the people are unimportant. Their age, gender, appearance, personality, etc. doesn’t matter to me at all. ( They probably don’t even have to be people – they could be aliens.) I am not attracted to the people involved, they are just required tools for the situation to occur.

According to the definitions, I technically am asexual, because I do not experience sexual attraction to anyone. Equally, I am not grey-asexual, because I don’t intermittently experience sexual attraction to anyone – I never do. But I am different from what I believe is a large portion of the asexual community.

3. Pansexuality

pansexual flag

pansexual pride flag

For a while, I identified as pansexual, because I felt sexual attraction, and the genders of the people involved didn’t matter. But the moment I discovered the term asexuality, I realised that I wasn’t really attracted to the people involved in my paraphilia, so much as indifferent. I dont really think I can say I’m sexually attracted to someone if I don’t really care who they are.

4. Autochorrissexualism

autochorrissexual

autochorrissexual flag

Autochorrissexualism is a disconnection between oneself and a sexual target/object of arousal. It may involve sexual fantasies, or arousal in response to erotica or pornography, but lacking any desire to be a participant in the sexual activities therein.

This is a category that falls under the asexual umbrella. The argument for this is that someone who is autochorrissexual experiences arousal and not attraction, as the person does not want to actually do anything with the object of their arousal. For me, this is another label that kind of fits, but for me, it focuses too much on the willingness to participate. Like before, whether or not I actually participate is irrelevant for the attraction/arousal. It is the situation that matters.

5. Why is it difficult to find a label for this?

I seriously doubt I am the only person who is in this situation. The problem is that the topic of paraphilia and fetishes is very taboo.

For many people, their sexual fantasies cannot ever realistically be realised because they would be harmful, or illegal, but that doesn’t change the fact that they have these feelings. But because the very topic is so taboo, not only can these people never realise their deepest sexual fantasies, but they now have to live their whole life repressing their desires for fear of being discovered. They have to carry this huge socially-taboo secret, and bear their own disgust and self-loathing their entire life in secrecy because of who they are and how they were born. These people are probably the ones who need most someone to confide in, to talk to, to share the burden. But they never can.

Looking back, I can clearly remember being unusually interested from as young as four years old. I didn’t link it with sex becuase I had no idea what that was, but the feeling was the same. It wasn’t something I chose – it was something that came naturally. Just like being gay, or straight, or any other orientation. I was born like this. 

Do I have a disorder? Officially, not unless my paraphilia causes me distress or causes me to harm others. (which it doesn’t).

Am I weird? Probably. But not just because of this.

Am I broken? Again, probably. But because of this? No. This is just a part of who I am and I can’t imagine being any other way because I never have been.

That being said, I was extremely worried as a teenager that I was broken. I knew only what society and the media had taught me – people with unusual sexual interests were bad. They were scary. They were dangerous. I had unusual sexual interests, therefore, I was bad, scary and dangerous. I knew I would have to repress my desires – probably forever – and I knew from tv that people who did that inevitably slipped up one day and spilled the beans, or went crazy and took out their repressed desires on someone else – hurting them in the process. I was utterly terrified that I would end up like that. I actually sat down and promised myself that, if I ever felt like I was going to hurt someone because of my paraphilia, I would kill myself to make sure I never could. But I was still scared that I wouldn’t see it coming – that it would sneak up on me and I would hurt someone before I knew what I’d done. I was scared for my parents finding out that I was a monster, some horrible freak. I was deeply and truly afraid of myself and I seriously considered committing suicide to save the world from me.

It was actually a speech at a school assembly that pulled me through that low. The principal stood on the stage and told us that all our lives we’d been learning, and it was kind of like a loan. We’d been given all this knowledge for 15 years of our lives, so that when we came out of school we could use it to put something back into the world and make a positive difference.

At first, I was angry. I was furious! I had something unfinished, a debt unpaid, that I’d had no choice in. I hadn’t signed up for anything, and no one had told me. But after I thought about it a bit, I realised that if I was willing to check out of the world in order to prevent something bad,  it meant that I was passionate enough about what happened in the world to be able to make a positive difference. I could confidently say that I wanted to make a positive difference in the world, so I decided that was what I’d do. Once I’d repaid my debt and added something good, I could revisit my debate about whether or not to check out. And that’s how I made it through.

So I can understand why people don’t want to talk about these things. It’s a painful and a scary topic to approach. But we can’t help what we are and how we work. Being unusual does not automatically make us dangerous. What can be done about it though? I don’t know.

6. Asexual Fetishists

asexual furry

asexual furry flag

I literally just came across this discussion with an asexual sneeze fetishist who describes their experience as very similar to mine. So it seems that asexual fetishist is a term that, theoretically, is in use and describes my feelings. (Yay!)

I can see why it’s taken me so long to come across this term though. It’s not exactly something that I would be comfortable openly identifying as.

“Hi everyone, I’m Q and I’m an asexual fetishist.”

-silence-

Yeah. It’s accurate, but… kinda crude. So I guess for now… I’ll stick with asexual-not-disclosing-more-info. That was a long rant just to arrive back in the same place that I started… Thanks for reading all the way through if you made it this far!

What are your opinions on the topic? Have you experienced something similar or related? I’d love to hear from you 🙂

Q

a deep and meaningful about seasons

Today’s post is in resposnse to this daily prompt about seasons turning.

Summer is for socialising

Summer is easily my favourite season. For me, summer is about warmth and comfort. It is beaches and parks and having fun outside with friends. Summer always seems so colourful because the brighter light makes the colours so much clearer and more real. The increased sensory input during this time makes me feel so much more alive than at other times of the year that I can happily deal with the sudden abundance of biting insects and the necessary daily application of sunblock. Summer is carefree and easy. Summer is for socialising.

Autumn is for appreciating

Autumn closely follows summer as my second favourite season. Autumn is better suited to my introverted nature as it encourages inner peace and reflection. All around, birds and insects start to quieten down. The light fades earlier, the sun rises later, and leaves start to change colour and fall off trees. Autumn is a symbol of the changing seasons, a gentle reminder to appreciate the warmth and the beauty of the outside world while it lasts, and a trigger for memories of all the autumns I’ve had. Looking back and reflecting brings nostalgia and also pride for how far I’ve come and how much I’ve grown. Autumn is inner joy and childlike wonder of the world. Autumn is for appreciating.

Winter is for waiting

I don’t like winter. Winter, to me, is cold and dark. It is sad and it is lonely. It is sitting inside by myself without even insects to keep me company. But most of all, winter is struggling. It is fighting against the elements, fighting to stay warm, to keep on top of illness, fighting to get rooms and laundry and shoes to dry. Winter is a test of your ability to survive while you wait for it to be done and gone. The only things that get you through the harshness of winter are the warm meals, the fire in the fireplace, and spending the long cold nights with family. Winter is a test of endurance. Winter is for waiting.

Spring is hope

Spring is a pretty miserable season really. It’s wet and rainy and full of pollen and hayfever. But spring is precious because it marks the end of winter. Spring lets you know the cold and dark is finally over and you’ve made it through. Spring shows you that the worst is behind you and things are going to get better from now on. Spring also brings the idea of a fresh start and new beginnings. Everywhere around you, baby animals are being born and new leaves and blossoms are growing on trees. I myself am a spring baby, so spring marks the beginning of a new year for me. Spring is starting again. Spring is hope.

What this means to me

The turning of the seasons is just one of many many cyclic occurences present throughout the natural world. Cycles such as this are so important because they are constantly changing and reminding us that nothing stays the same, nothing lasts forever. The seasons are a reminder to appreciate what you have while it lasts, and to not get too hung up on the negatives in your life because, like everything else, even those will come to pass. They tell me that it is important to forge ahead while the tides are with me, but that it’s also okay to give in and go with the flow when the tides turn against me.

The only thing certain in this life is change, constant and endless. It can be beautiful and it can be heartbreaking, but in the end it is change that allows us to live and grow in this incredible world in which we live.

What do the changing seasons mean to you? 

Q

exploring my romantic orientation (or lack thereof)

http://aromantics.wikia.com/wiki/Lithromantic

A brief intro to romantic orientations
Romantic orientation describes who someone is inclined to form romantic relationships with. It often uses the same prefixes as sexual orientation (homoromantic, heteroromantic, biromantic, etc) but is considered seperate from sexual orientation, especially by asexuals who do not experience sexual attraction but often experience romantic attraction and desire romantic relationships. For most people who identify with sexual orientations other than asexual, their romantic and sexual orientations align but this is not always the case and conflicting sexual and romantic orientations do occur.

My original assumptions
For the past month or so, I’ve been so overjoyed at finding a label for my sexual orientation (asexual) that I didn’t really think much beyond that. I did some vague research on romantic orientations and applied the same logic to my romantic identity as I had originally applied to my sexual orientation. That logic being:

  • I don’t really see males/females/non-binary people differently when it comes to attraction and relationships.
  • As far as I’m concerned I would judge each person’s character individually when considering whether or not to have a romantic relationship with them and that would not be affected in any way by their gender identity or sex.
  • Therefore I must be panromantic, possibly demi-panromantic.

So I went with panromantic and left it at that.

Then fate intervened
I stumbled across this post yesterday and read it completely out of curiosity. I didn’t expect it to resonate so strongly with my own feelings and past experiences and I left in a complete frenzy of questions about my identity. I’d never really thought about what it meant to have a ‘romantic attraction’ or what a ‘romantic’ relationship actually meant to me. All of a sudden it was like realising I don’t experience sexual attraction all over again – a niggling feeling in the back of my mind that I kind of always knew something was different there but I never really stopped to examine it.

Relationships almost always leave me feeling trapped 
The post described a feeling of being ‘caged’ when in a relationship – like being in a romantic relationship is trapping you and wearing you down rather than building you up. And I do feel that in my romantic (and even  close platonic) realtionships there has been pressure on me to behave, act and feel certain ways that have been in conflict with how I actually felt and wanted to behave. This left me feeling like my personality was being suppressed by the relationshipthat I was losing my individuality and becoming an entity. I tell people – friends, close friends especially, and my partner – that I need a lot of space. I live with my partner but I have my own room because I need a lot of time to be me, to recover from the assimilation that I feel happens when I spend a lot of time with people. I plead with people not to be offended when I take time (sometimes a long time, months even) to myself, to just be and to get away, but ultimately I have lost a lot of friends, and significant others this way. Because how can they not take it personally? I don’t want to spend time with them. I’d rather be alone. And I can’t deny this. But I also know that I need them, and that I will need them when I come back from spending time alone.

I’ve often felt relieved when relationships have ended
The post mentioned feeling relieved when relationships have ended and I have definitely felt that with previous relationships. It made me feel awful and terribly guilty but as soon as the behavioural expectations associated with the romantic relationship (holding hands, cuddling all the time, kissing, etc) were lifted I felt like I could breathe again and it was such a relief. (I’m so fortunate my current partner is very understanding of my random and frequent need for space and lack of physical contact from time to time. He lets me do everything at my own pace and I am so so grateful to him for this).

What does ‘romantic’ mean to me? How is it different from platonic?
Finally, I realised that all of my romantic relationships have begun as strong platonic friendships that have morphed into romantic relationships.
I suddenly realised I needed to question whether I actually do experience romantic attraction at all. Where do I draw the line between platonic and romantic relationships?
I had to dig deep into my memories to try and recall exact thoughts and feelings. After a bit of soul searching, I found that I could answer that question. (That in itself made this experience different from when I was exploring my sexual orientation because I could not really answer what sexual attraction meant to me.) I can honestly say that I have felt romantic attraction a handful of times. I have felt the warm feeling in my chest that says I’m excited to see someone, to talk with them, get to know them. The feeling that allows me to read their body language easily and learn so much about them so quickly simply because I am interested and I want to. This, to me, feels like what I expect of a romantic attraction.
For my strictly platonic friends, I enjoy their company a lot, but I don’t get that same feeling, that buzz of excitement and anticipation when spending time with them. I don’t memorise their habits, body language, and words so I can analyse and understand how they think and respond with their own body language, humour and terminology. These are things I have only done when romantically attracted to someone that handful of times.

What do I want in this situation?
When I feel like this, I feel as though I want the friendship/relationship to be more and more intense, but in reality I know that it’s perfect the way it is, that there’s a fine line between having this fun, carefree, platonic relationship, and falling over into the awkwardness and complicated mess that is a romantic relationship. So basically, I feel like I want more from the friendship, but really I don’t. And if I’m put in the situation where the other person wants a romantic relationship, things get scary very quickly and the whole nature of the relationship takes a turn for the worse. Ultimately, the romantic attraction disappears very quickly.

Applying a label
As I have experienced romantic attraction (even if I can count all the instances on one hand) I don’t feel as though I’m truly aromantic, but rather somewhere under grey-aromantic since

  • I experience romantic attraction infrequently
  • I have to have a very strong emotional attachment with someone before experiencing romantic attraction
  • When I experience romantic attraction I don’t truly desire a romantic relationship
  • My romantic attraction is somewhat blurred with my platonic attraction

I revealed to myself a very clearly defined set of experiences, feelings and situations in which I experienced my romantic attractions. And when I laid it all out, I realised that I’ve read a word that basically covers all of this exactly. Lithromantic, an orientation on the aromantic spectrum, where someone feels romantic attraction but doesn’t need or want reciprocation of those feelings.

What does it mean to be lithromantic?
I went straight to google and one of the first things I stumbled across was this beautiful story. It describes to perfection the way that I take in, learn and memorise every minute detail about the people who I develop romantic attractions to. How every interaction with this person is electrifying and fulfilling and enough but not enough in its own way. How I don’t need (and really really don’t want) to be exclusively tied down, to be obligated to spend time with them and enjoy their company, how that would ultimately destroy the relationship by changing it so irreversibly.
This person has basically written out my soul into a story and it is so perfect and beautiful I can’t actually believe it’s real.

That brings me to the end of my journey to dicovering my romantic orientation (as of yesterday). I hope it’s been interesting/educational because it sure was an exciting experience for me and one more step on the road to self discovery!

Have you had a similar or interesting story surrounding the exploration of your romantic orientation?
If you are lithromantic/grey-aromantic/aromantic, how did you come to discover this about yourself?
What are your thoughts on lithromanticism?

I’d love to hear your stories and opinions.

Q

coming out as ace (asexual)

It’s been quite a while since I last posted, and that’s mostly because I’ve had a pretty confusing time recently. For the past month or so, I’ve been coming to terms with the fact that I’m not actually pan/bisexual (like I stated in a previous post), but rather a pan/biromantic asexual.

I cannot describe the relief I feel at finally having a label for my sexual orientation that accurately describes me. Where I used pan/bisexual to describe me before, I was never really convinced that it fit properly, but I just picked it up as ‘close enough’ and wore it slightly hesitantly. That being said, it has also been pretty frightening to come to terms with because I identify with the label so strongly. While I was not 100% comfortable with my previous label, I could deny parts of it, deep down, to myself. I could tell myself that I didn’t have to feel responsible for telling people about my orientation, that I didn’t want to tell people in case I confused them (because it confused me), and that I could just ignore my sexual orientation most of the time because there didn’t really seem to be a description that applied to me. I think I came out to maybe three people in the three or so years that I identified as pan/bisexual.

I’ve come out to more than that about my asexuality in the past week alone. Why? Part of it is that I really want people to understand me better. I’m a pretty closed off and confusing/confused person, so if I can find a label that carries with it an entire description about me, I want to use it. Granted, most people don’t really know anything about asexuality or its description, but I’m not opposed to explaining it if I can pull up a page on the internet to back me up. Here are some of the questions I have prepared for. I have been asked some but not all of them (yet).


What is asexuality?

Asexuality is the lack of sexual attraction to anyone. I am not sexually attracted to anyone regardless of their gender, age, ethnicity, or appearance.

So, you’re against sex?

Personally, I am not against sex or repulsed by it. I actually enjoy it. This is not true for all asexuals, and there are many who are repulsed by sex, or are simply not interested in it.

But if you have sex, how are you asexual?

Sex drive/libido and sexual attraction are two seperate concepts. I have a pretty average sex drive, which means that sexual activity is common and important for me. I am just not sexually excited or aroused by people in general. Again, there are many asexuals who do not have sex. There are also many people of other sexual orientations who do not have sex. There are many reasons why people do or do not have sex and they may be completely unrelated to sexual orientation.

But you’re in a relationship…?

Yes, I am. I love and care deeply for my boyfriend despite lacking sexual attraction. I am romantically attracted to him and our relationship is extremely important to me.

What is romantic attraction?

Romantic attraction is the desire to be emotionally involved in a relationship with someone. I enjoy cuddling and dates and being emotionally involved in my partner’s life. For me, this is more than enough reason to be in a relationship. I feel it is important to note here, that just like sexual attraction, not all people experience romantic attraction. People who don’t are aromantic, and may or may not choose to enter into relationships – romantic, sexual or otherwise.

What is pan/biromantic?

The pan- and bi- prefixes work with romantic orientation in the same way as they work with sexual orientation. So a panromantic person is someone who experiences romantic attraction to people regardless of gender. A biromantic person is someone who experiences romantic attraction to people of the same gender as themself, as well as another gender (or other genders).

Well, which are you? Pan- or bi- romantic? 

It is often assumed that biromantic people are only attracted to men and women, but there is disagreement on the exact definition. I use biromantic because the bi-prefix is more well known and understood and doesn’t require an in-depth explanation about gender identity. This is especially important if I’m talking to someone that I don’t really want to know about my own queerness with regards to gender. Depending on the definition used, biromanticism does fit me since I do experience romantic attraction to people of a variety of genders. Panromanticism also fits me though, and possibly fits me better, because my romantic attraction to people is not really affected much by the gender of the person.


So this has really been central to my thoughts for the past month or so. I did have one panicked moment where I doubted everything I’d realised and thought “what if I’m not actually ace and I’ve just lied to all those people I’ve told and they’ll never believe me again and aaaaaah~” but when I took a moment to calm down, I realised that I’ve never really been interested in sex or anything sexualised in the media, or in shops, or in stories/movies/tv.

I had a friend who once told me that sexual release is like breathing – it’s natural and necessary and something that people just need to do every now and then. I don’t know how true his statement is, but I feel like it applies quite well to me. Sex, to me, is just a bodily function and I never really understood why society and the media seem to want to focus on and revolve around sex so much. I realise now that it isn’t really the act of sex that they’re focusing on, but rather the sexual attraction and playing it up. But that’s a topic for another post.

Thanks for reading! Feel free to ask any questions and share your thoughts and opinions (especially if I have made any mistakes! This is all new to me).

Q

the mental toll of long-term illness

It has been 5 years since I got sick.

People get sick all the time, so this shouldn’t be a big deal or an important event. I was a pretty healthy kid, got my yearly dose of the flu-like virus that was going around for that year and that was all. I haven’t been hospitalised since I was a toddler who snuck away to jump on the bed and foolishly fell off (something I’m sure most toddlers do at some point… it’s kind of a rite of passage). My point is that any form of prolonged or drawn out illness was a completely foreign concept for me.

For anyone who is jumping to conclusions, no, I didn’t get cancer or some terminal illness. Nothing as devastating or serious as that. I got glandular fever. Mononucleosis. One little virus. Again, it shouldn’t have been a big deal. But it was.

I was in my final year of high school, and it was an important year for me. I was taking subjects centred around science and maths and was to sit four scholarship exams. I didn’t have time to be unwell. So when my throat swelled to the point that I could barely hear, eat or drink, I went to school regardless. I would heal, I assumed. The doctor said it was strep throat (even though I told her I didn’t think it was). She gave me anitibiotics (which didn’t work and gave me a rash), and the tests came back negative for strep.

Eventually the swelling went down (mostly, I still have lumps in my throat though) but I didn’t fully get better. I was tired all the time, and I would get pains in my joints, mild fevers and just general unwell-symptoms regularly at the slightest overexertion. Emotionally, I was numb. I couldn’t feel anything at all. I just stuck to my routine of get up, school, sleep. Someone suggested I exercise, so I went for a swim and was bed-ridden for a week afer. Coincidence? I tried it again months later with the same result. I stopped going out with friends with the explanation that I just didn’t feel well, but people started to question it because I couldn’t be sick all the time, could I?

After about six months of my parents and my doctor telling me I would be fine and I was overreacting, I got a full blown flu and couldn’t leave the house (or my bed) for two weeks. I remember one morning, very clearly, lying in bed and hurting every time I tried to breathe. Suddenly I was completely convinced that I would not get better from this. I was certain right there in that moment that I would die. It was like I could actually feel Death standing in the doorway, considering me, deciding whether to take me now or come back later. I was utterly terrified and… sad. Sad, that I wouldn’t get to find out what the world had planned for me. I looked at my life and realised that I hadn’t really planned anything for my adulthood anyway. I could never really picture myself living beyond adolescence, and this just seemed to convince me further that I was about to die. It calmed me a little, thinking that this was how it was always meant to be. Clearly I was wrong about that, but it helped me at the time. My mum walked through the doorway around then and said that she would take me to the doctor. I remember clearly that the sun came out from behind a cloud. The doctor took one look at me (I had lost almost 10kg in the two weeks I had been housebound) and sent me for a blood test at last (what I had asked for at the beginning).

Glandular fever had effectively killed my immune system. The flu I’d caught as a result had taken down my thyroid. This meant I was burning energy faster than I could put it in. There was not much they could do, I had to wait to heal, but it was good to finally know that it wasn’t all in my head and that I wasn’t overreacting. I felt justified in my silent struggle. I picked up a few more symptoms to add to the list – heart palpitations and panic attacks – but I stopped losing weight. And as long as I didn’t exercise, or go out, or do anything that remotely resembled a life outside of my room and my classroom, I didn’t get sick. I dropped all my extra curricular activites, even those I had stuck with for ten years. It probably should have hurt, but I didn’t feel much. It was necessary.

My grades ended up being really good. I found that I was too tired and empty to care much at the time. (I am incredibly proud of my achievements now though). I wanted to study medicine, but I knew I wouldn’t be able to. I’d had a year to become very familiar with what I was no longer capable of. I was very careful in my first year of engineering at university. I didn’t drink, I didn’t exercise, I didn’t go out. I went to uni, then I came home and studied. I got good grades, I liked what I was doing, I could live with that.

Then part way through second year, two and a half years after getting sick, I started to feel again. And if I thought I was emotionally repressed before all this happened, that was nothing compared to how it felt to have two years worth of feelings suddenly start to stir. There was a lot of anger and feelings of injustice, a lot of regret for the time that I had lost and all I had missed out on, regret at my loss of fitness, hobbies, friends. There was a lot of feeling misunderstood, because I would try and try and try to explain this horrible mess of feelings to people, to help them to understand, but there was just nothing there for them to comprehend. It was all “Yeah, we know you got sick. That happened like two years ago. But you’re better now.” It seems that being sick and out-of-action for so long isn’t really something you can understand well unless you’ve experienced it. Even though my body was finally starting to pull itself together physically, the mental damage of being taken down so suddenly and for so long ran so much deeper than the physical sickness.

So I coped the only way I could. I started drinking so I could forget. I was an engineering student, it was expected of me. That’s what I told myself anyway. After a year and a half of that, I was beginning to realise it was getting out of hand. It got to the point where I was having at least one drink every day, I was showing up to classes and tests moderately intoxicated and I was struggling to remember what I was supposed to be learning. I can’t actually remember what it was that triggered this epiphany (which probably says enough in itself) but from one day to the next I decided to stop. Which wasn’t very fun. And the fact that it wasn’t very fun was the most frightening part. I hadn’t realised that I was dependant. Mood swings, shakiness, paranoia, panic attacks, hallucinations. I lastest a month, maybe two, before I caved and just about coma’d myself with a bottle of wine. I was so violently ill that night. Apparently that was what I needed though because I haven’t needed to get drunk like that since. I still drink, on occasion, but it doesn’t have nearly the same attraction for me as it did, I don’t crave it, and I don’t lose control like I used to.

I started running last year.

It seems insignificant, but it really isn’t. The fact that I can do this, without getting sick, that I can actually start to work on bringing my fitness levels back up, that I can actually do something to get physically healthier is a massive achievement and a huge weight off my shoulders. I’m not a fitness freak, but I was always active, and I absolutely hate it when I can’t do something, so this was a huge deal. I was taking back control. I would be all right. And a couple of months after I had started running, I woke up one morning and I realised… I felt content. I could face the world today, and I wouldn’t just be tolerating it. I felt as though I could begin to participate in life again. That morning, I looked at my ceiling and I decided, finally, that I was better. Almost four years after I got sick, and I was telling myself that I was fully recovered now. I was okay. And I was.

A year later, and I’ve hardly thought about the time when I was sick. The experience has definitely changed me and perhaps made me a harder person than I was, but I have learnt so much about my body and how people cope with illness. This post is really just for me to express my gratitude that I did finally get through that mess even though there were many times that I thought I never would. I hope that it can help someone who is struggling to hold onto the hope that there is an end to the pain, even if it’s a long journey away.

But really, the most important lesson I’ve learnt from all of this is to take care of yourself and listen to your body.

Q

jumping to conclusions

Source: http://groundedpsyche.com/iceberg/

One of the hardest things for me to accept is that moment where people learn some small scrap of information about you, and use this to build an entire picture of the person they expect you to be from that. Sometimes what they learn about you is something so ridiculously small that I can’t help but think, ‘Seriously? You’re judging me based on that?’ Not only is this practice misguided, but it’s also a giant punch to the gut. We are all so much more than just a sum of facts and past activities.

I mean, I’ve fought my way through a four year degree where I worked 60 hours a week to carry projects through and compensate for teammates who refused to show time and time again. I’ve dealt with family illnesses and deaths, personal long-term illness, and the death of the most patient and loving creature in my life – my beautiful cat. I’ve won awards, not just within my degree, but in language and Chinese calligraphy. I’ve written and continue to write stories that are read by thousands of people. I cry when I watch superhero movies and still dream of becoming one. I make my own costumes for dress-up parties, and I can do more chinups than most guys my age. There is so much more to me than you can possibly see after just meeting me, and you’re going to judge me based on the fact that I don’t have a driver’s license? Really?

Some days, people are such an effort…

Q