Danielle/26/female This blog is where I vent about my life with narcolepsy, PTSD, and other health issues I face. CW: There may be traumacore featured on this blog
Having an episodic medical condition means having to write detailed documents for people on what they should do in the event of an episode, walking them through every scenario, having to explain your episodes to everyone whose going to be a recurring figure in your life, wear extremely obvious medical I.D., and constantly try to raise awareness about your condition because ignorance kills.
And that's all just in HOPES that people will use basic common sense. And still your episodes are still handled incorrectly on a regular basis.
I hate how my relatives think I'm lying about having an illness and say I'm just being lazy and that's why I sleep so much.
Drives me up the fucking wall.
Y'all thought I wanted to go through all that uncomfortable testing? Y'all think I want to take 2 massieve pills daily so I don't seize in my fucking sleep? You think I willingly spent money on all those appointments in search of answers? You think I wanted to do all those EEGs, spend time seeing doctors and hospitals instead of working to be able to live a somewhat normal life?
You lied to me. You told me family is there for each other.
You told me family is supposed to support you.
You smile to my face and ask me how I'm doing.
And the moment I leave you spit venom and tell everyone how much you can't stand me or my parents.
How you think I'm a lazy, good for nothing piece of shit.
How there's nothing wrong with me, how I'm not disabled.
That either I'm lying, or the doctor is lying.
I'm sick of hearing your venom spreading in my head everyday in that voice of yours.
You're a snake and you're nothing more than a snake and you always will be.
How am I supposed to get rid of venom that's built up for years, even after blocking you? It's poisoned me for too long. It feels like it'll never go away.
Do you ever think back on a random childhood memory and realize it was more fucked up than you initially thought? I didn't realize until adulthood that some of my teachers were bullies too.
yes, there are that many really disabled people on the internet actually
When I was less sick I used to think, "It seems like such a large portion of people on the internet are disabled, it can't possibly be that large of a percentage of the population" and then let my ableism demons tell me it was because they were faking (the same ones that told me I was faking, until I made myself really ill.)
But now that I'm sicker and wiser I realize I was logically just wrong because
The internet is disabled people's lifeline. There are more disabled people on the internet because OF COURSE. People who aren't disabled can be less chronically online because they don't have to be. This is textbook selection bias!
But actually also I was almost right, because there are way more disabled people in society than you would think! They're just systematically hidden and excluded from public spaces for abled peoples' convenience! 🙃
Anyway maybe this will help you understand and/or explain to abled friends and family.
I saw my neurologist today, and I got my official diagnosis of epilepsy.
What I didn't expect was to be told there's a high chance that I have drug resistant epilepsy.
I'm scared. I don't know how to process this news.
And without insurance, who knows when I'll be able to get the tests needed to look further into this.
I'll call the local epilepsy foundation tomorrow. I just need to give myself time to process this, but I don't even know how. I'm just numb. I have trouble actually feeling things in general.
Is it a universal Autism experience to say something and then the people around you laugh and you ask "What's so funny?" and they say "Nothing" because NTs like to play a game with us called Guess What You Said That Made Me Laugh
Neurotypical Person: "Just talk to people. Stop being afraid of rejection. The only way you'll fail is if you don't even try. Have some confidence."
Autistic Person: (asks whatever questions they can think of from a prepared list and the conversation ends up being awkward and forced)
Autistic Person: (infodumps about their special interest and gets labeled as annoying)
Autistic Person: (comments on something they observe and gets labeled as judgmental)
Autistic Person: (approaches random people in random places, not realizing that there are some places where people don't expect to be approached, and gets threatened)
Autistic Person: (talks to someone, misses a subtle cue that they want to be left alone, and gets labeled as disrespectful of boundaries)
Autistic Person: (tries to join someone's conversation and gets labeled as an eavesdropper)
Autistic Person: (teases someone as a joke because they've seen that that's how a lot of people interact with each other, not realizing that they don't have enough of a connection with this person to do that, and gets labeled as mean)
Autistic Person: (tries to talk to someone who's already talking to someone else and gets labeled as rude for interrupting, and waiting until they're alone to avoid interrupting isn't an option because that rarely ever happens)
Autistic Person: (approaches someone or faces in their general direction while trying to think of what to say to them, and gets labeled as a creep for hovering or staring)
Autistic Person: (talks to someone too often and gets labeled as clingy)
Autistic Person: (talks to someone, by some miracle it works and this person actually enjoys the conversation, but now they have to do it again and again and again, and they eventually run out of things to talk about or do something wrong)
Autistic Person: "I don't get it. I talked to people. I did exactly what I was told to do. And I didn't say anything sexual, anything gross, anything about death, or anything else that would be considered 'obvious'. But it didn't work. It can't be because I did something wrong, because I followed the advice exactly and so many people insisted that that's all I have to do. There must be something wrong with me. Maybe I'm just unattractive."
in case you haven't seen it yet, here's the menhera 101 article by HoshiCandy from Kei Club Issue 3. not sure if i'll post the other menhera related articles from this issue or not, so consider checking the link in source if you're interested.
i'm also leaving a text transcription under the cut for anyone that may benefit from that
Menhera 101
Menhera fashion has quickly been gaining popularity worldwide! This fast growth has come with its fair share of misunderstandings about the community and style. Menhera artist and designer HoshiCandy is here with a lesson on menhera’s origins, history, and basics. Find more of her work on the pages before and after this article!
What is Menhera?
“Menhera” can be thought of as “a person who seeks mental wellbeing”.
The word “Menhera” was born in Japan in 2001, on the “Mental Health” board of anonymous forum 2ch, where users discussed their wellbeing. The users of this board were named “Mental Healthers” which was shortened to “Menhera”.
The Menhera community covers anything that might cause one mental suffering, such as: physical illness or disability, depression, anxiety, eating disorders, bullying, hyper-sexuality, sexism, homophobia, etc. Importantly, there is no need for a formal diagnosis, as the focus is on how you feel, and that you want to feel better.
It is difficult to talk about these topics in Japanese society without being heavily stigmatized. Menhera is a community to speak safely without that stigma. Of course, this stigma and need for community when it comes to one’s mental wellbeing is not limited to Japan, and that is why menhera has grown in the west as well.
Since the creation of the word in 2001, there have been several manga published with “Menhera” in the title, many Visual Kei songs about it, Menhera idol groups, and several menhera fashion brands.
However, an unfortunate addition to all this has been the discovery of the word in mainstream media...
Just as the topic of illness is heavily stigmatized in Japanese society, the word “Menhera” itself became quickly stigmatized and stereotyped as “an attention seeking, troublesome person” or “an overly attached girlfriend” (aka “yandere”). If you were to speak to a Japanese person about “Menhera”, this would most likely be what they would think you meant. This stereotype tends to be referred to as “Menhera Kei” in Japanese which is why we avoid the use of “kei” for Menhera in particular.
Despite all this, the true menhera community has continued to grow.
Menhera Motifs
Artists in the Menhera community created many works of “Vent Art” art that expresses their feelings and suffering. When this art was printed onto clothing, Menhera fashion was born.
These are some themes you will commonly see in Menhera:
Medication
Suicide
Self-harm
Hospitals
Sex and BDSM
Social Media Addiction
Heartbreak
Wearing Menhera art printed on clothing serves as a way of literally wearing one’s feelings on one’s sleeves. It turns invisible suffering visible, and fights against the stigma driven silence. This means that Menhera fashion is highly confrontational, with graphic depictions of illness symptoms. Although the onlooker may feel discomfort, the Menhera style says “this is my true reality, don’t pretend it doesn’t exist!”
Depending on the feelings of the wearer, Menhera fashion also says “although I am sick, I can still be ‘kawaii’” or “although I appear ‘kawaii’, on the inside I am suffering”.
Turning the invisible visible, forcing the silence to be broken, and challenging kawaii culture, these are the goals of Menhera fashion.
The Menhera Silhouette
Carefully avoiding a highly theatrical or OTT (over-the-top) look is important for maintaining the integrity of the goals of menhera. Menhera is a very casual style, with few accessories and light makeup. The key is for a coord to centre on Menhera imagery, whether vent art or text-focused designs, printed onto clothing.
Be careful not to dress up as the characters depicted in vent art, who are often costumey, gory, and OTT.
Menhera Coord checklist:
Printed Menhera art
Byojaku/Minimal makeup
Not OTT/Few accessories
Flat Shoes
[optional] Oversized top
[optional] Hime bangs
[optional] twintails
Colors can vary: a pastel yume look, or a gothic yami look, both are fine!
The makeup style is called “Byojaku” meaning “sickly/weak”. Reddish colors are applied to areas around the eyes to give the impression of crying or illness. The rest of the face is kept plain without much color.
A Note of Caution
The Menhera community is about healing, and seeking recovery and wellbeing. It advocates getting help, medication, therapy, and receiving support through your recovery journey.
True Menhera never encourages or enables harmful behaviors, and never glorifies them. Menhera fashion is an alternative way of expressing your suffering without self-harm. Menhera fashion empowers the individual through their recovery, but does not empower harmful behaviors.
There are some, sometimes labeled by the community as “Wannabe Menhera”, who mistook the meaning of “menhera” after seeing its rise in popularity, as it being trendy to fake mental illness. They engage in behaviors such as posting self-harm photos (real or faked) to social media with the tag #menhera, and other attention-seeking behaviors.
While this is the opposite of what the Menhera community stands for, is harmful to the unfortunate viewers of these photos, and creates further stigma against the community...it cannot be ignored that these “Wannabe Menhera”, too, need help and healing.
The Menhera fashion movement is to help you feel comfortable, unashamed, and kawaii in your skin, scars and all. It is NOT for encouraging people to create new scars “for the aesthetic”.
If you are struggling with mental or physical suffering, thoughts, or behaviors that cause harm to yourself or others, please seek help. If you do not believe you deserve help, you do, please seek help. If you believe you are faking it, you likely are not, your feelings are valid, please seek help.
Don’t have access to therapy?
We found a comprehensive list of suicide prevention hotlines at https://ibpf.org/resource/list-international-suicide-hotlines [link no longer working]
There are also free and affordable counseling services online like Better Help and Pride Counseling! Look online to find what option could work for you!
Alternatives to Menhera
After reading all this you may be thinking “the Menhera community sounds good but all the fashion is too restrictive for me” and if so, you’re not alone! But the good news is that you don’t have to wear Menhera fashion to be in the Menhera community.
Look up any of these alternative styles online for examples and more information:
Yamikawaii (“Sickly-cute”) is essentially the aesthetic of Menhera without the activism, a corrupted dark kawaii. Unfortunately the word was trademarked and now suffers from copyright takedowns.
Yumekawaii (“Dreamy-cute”) an aesthetic evolved from Fairy kei to describe everything pastel and kawaii, but with a slight edge, described as “fairytales with poison”.
Marekawaii (“Nightmare-cute”) created as an alternative to Yamikawaii to avoid the copyright issues, and as a counterpart to Yumekawaii. Marekawaii is specifically defined as being open to your own interpretation and style.
Medikawaii (“Medical-cute”) a pastel kawaii aesthetic focusing only on medical motifs, such as medicine and hospitals.
Gurokawaii (“Grotesque-cute”) mixes frightening and disturbing imagery with kawaii. Kyary Pamyu Pamyu helped popularize it.
Iryouu Kei (“Medical Kei”) a Visual Kei substyle with lots of gore and hospital theming, very OTT and theatrical, such as dressing like a nightmare nurse.
Living Doll artists see themselves and their bodies as a canvas to create art and express themselves, often with intricate makeup and body painting. This is a good one to look at if you’re into heavy artistic makeup.
kianamaiart
yousharknotpass
gummygunk
blakekathryn
pixelskylines
theartofmadeline
