I’ve spent my whole life hiding parts of myself and censoring parts of my personality.
These days, I’m finally getting to the point where I’m able to start managing things properly. However, my twenties have been filled with steps and missteps towards figuring out what’s ‘wrong’ with me, and it’s been a hard, frustrating, painful, embarrassing and exhausting process. A few years ago, for example, I missed one of my best friend’s 21st because I had a migraine that almost caused me to crash my car, to not be able to sleep or sit up or see properly and seriously consider bashing myself in the head with a baseball bat so that I could pass out and get some relief. It was actually caused by a sensitivity to sulphites in one cider I had drunk the night before, coupled with a twisted cervical vertebra in my neck. But everyone thought I was just hungover, and got really, really pissed at me. I was pissed at myself, too, and so embarrassed. I felt like the worst person in the world, that it was my fault that these things seemed to keep happening at the absolute worst times. It wasn’t the first time, and it wouldn’t be the last. This is just one example of a hundred different things I’m realising have had a common underlying cause the whole time.
Now when I drink – if I drink – I take anti-histamines and probiotics just in case, because I don’t know what will set a reaction off, and I’ve tentatively fixed my neck after a year of regular specialist treatment. But that’s taken several years to begin figuring out, and I don’t think I’ve been able to repair the damage in reputation or relationships in the meantime. I’m still known as being unreliable, flaky, weird and a hypochondriac.
Which brings me to the point of this post: I’m done hiding. I’m over being embarrassed of times where I have a reaction to something, or have to be extra careful with my energy, or have to wear a brace or strap my joints, only to be fine and brush it off the next time I see someone. It may not be the worst thing about being sick, but the social impact becomes just as debilitating, because there is just no way to tell what will happen day to day, and it’s difficult for even those closest to me to understand. I’ve touched on how my Hypermobile Ehlers-Danlos Syndrome affects social stuff previously, but this is a clearer explanation.
Usually I’d forgo the medical aid or treatment I need, or close off an entire week to be able to go to a social outing or function so that I can appear ‘perfect’ or even just normal. When I have a bad day or slew of days, I’ll somehow be embarrassed?? Like; ‘Oh oops, hahah! Not sure what that was about, but let’s get on with it shall we? Please ignore that!’. I’m learning the hard way that that’s just not how it’s going to work, and I can’t spend half of my life hiding and pretending I wasn’t sick or in bad shape sometimes, that I’m slow to react or quiet because my energy has literally run out. Although I’d like to always be cheerful and chirpy, sometimes I’m just exhausted. I’m so exhausted I can’t even muster up the brain power to realise I might be less than enthusiastic about something, or get upset about something trivial because I’m still fighting needing to rest instead of what I think I should be able to do.
It’s not some lame, cliché sob story, though. When I have a ‘good’ day, I’m great! I feel like I can take on the entire world, meal prep for a month, clean the whole house, outrun my naughty dog, swim 100 laps, outdrink all my friends and stay up dancing all night. But I know now if I do that, I’ll crash really hard, for several days. I’m finding the sweet spot between being a hermit and being the life of every impulsive party I want to throw when I feel like I even have a bit of focus and energy.
So basically, I’m asking for some understanding. Maybe I have some ‘nerdy’ or lame hobbies – it’s because I don’t have the energy most of the time to do anything more strenuous, but I still want to enjoy myself when I have some downtime. Sometimes you’ll see me sitting down at every opportunity, carrying a first aid kit in a chunky backpack, never wearing heels, or have mobility or stability aids, and sometimes you’ll see me hiking a mountain or eating my weight in Korean chicken and beer. It’s just the nature of the illness, but I’m starting to realise it doesn’t mean I have to politely excuse myself from my own life. I mean, that’s just ridiculous. If I never get any better than how I am at this point, I have to learn to be ok with that and be happy regardless.
I’ve tried so many different career choices, study choices, workplaces and lifestyles, and it’s only now that I’m able to figure out what actually works. I can’t shake the feeling that I’m so behind everyone else, but at the same time, I wouldn’t trade all the experience and wisdom of every ‘mistake’ or wrong direction I’ve gone in. I feel like the last year has seen me reborn – I just have all the knowledge of my past lives to help me out going forward.
I’ll be sharing my true self from now on, instead of some curated online image. No longer will I be cutting myself off from my own interests because they only fit with the ‘good’ part or the ‘sick’ part of my personality. It’s pretty terrifying, but social media in particular is going to be my way of sharing my actual personality, that people can take or leave as it suits them, but hopefully have a positive impact to myself and others going through similar issues. That just because it’s different, it’s still a kind of normal, and now it’s my normal.
I love singing, makeup, beauty, skincare, haircare, fashion, fantasy video games, Youtube tutorials and interesting trivia, cute animals, history, mythology, languages and metalinguistics, UFC, travel, technological advances, dreaming of the future, writing lists, architecture, interior design, curating music, designing my future dream house/wedding/travel/lifestyle, scary movies, funny tv shows, Korean dramas, literally all kinds of music (except country), anthropology, the origin of language and words, Buddhism, philosophy, nutrition, cooking, surreal pop art, pre-raphaelite romanticism, drawing, painting, sunsets, dawn, the moon, swimming, the horizon. I believe in mind over matter, and I’m just done caring about what’s ‘good enough’ or not! I have so much love and ideas and creativity to spend and share on so many different things and interests and I want to be able to do that with everyone who comes into my orbit.
I’ve learned enough to be ok with not being perfect and not being some impressive amazing person, and I can finally open myself up to things I actually want to do, instead of pretending to fit in with what I believed to be expected of me.