…Thoughts About Communicating Mental Health
Looks peaceful, doesn’t it?
A woman sleeping soundly with her arm wrapped around a teddy bear.
Except, that this is only the “reality” that the pixels show you. If this was a video, you would hear me making noises from the back of my throat. You would see my fists pound hard on my head to make the rapid stream of thoughts stop. You’d see that arm around the teddy squeeze in tight, making you glad it’s not one of my cats. You would see me twitch every other second. That twitch stems from the pain of a brain being tasered.
I am fully aware that there is neither taser nor electricity. Unfortunately that does not stop the feel of electric shocks inside my skull. That knowledge also doesn’t stop the pain these shocks bring.
You might know this by another name: sensory overload.
I am squeeze-hugging my teddy bear because at that moment, he is the only one I can reach out to. He doesn’t talk, so there’s no secondguessing. He’s not a living thing so it doesn’t matter if I squeeze him a little out of shape. He doesn’t hug back so his touch doesn’t hurt me. Still, I wish he would. I’d gladly take the pain of the touch, if it meant I could feel less alone.
Don’t Tell Me How I Feel
I happen to have autism.
Granted, with a shitload of comorbids that makes me able to talk about other mental issues as well, however from an autistic perspective.
But primarily, I’m autistic.
Maybe you are dealing with anxiety?
An eating disorder?
Then I am fairly sure that you know exactly what I mean, when I say that – however well intentioned – people tend to explain to us how we feel – or should feel.
Have you, as someone with an eating disorder, ever heard people say “Oh, I want to loose weight too”, “But you can’t be having an eating disorder, you’re not thin” or what about this one: “Well, just because you want to lose weight, doesn’t mean you have an eating disorder” (oooh, I could slap that one silly!)
Or maybe, suffering from stress (you know, that actual illness that incapacitates you for months and sometimes costs you your job) you get to hear the amazing epiphanies of ignorants, like “Oh, I know the feeling, we were so busy the other day and my boss was such an a**hole”, “We all get a little stressed every once in a while, it’s no biggie” or “My boyfriend is so annoying. He stresses me out”.
In my case as someone autistic I occasionally get to hear things like: “You’re too smart to be autistic!” or “Well, we all don’t fancy grocery shopping, it’s not specifically autistic” or “It’s not like it’s such a big deal, why don’t you move on already”. My “favorite” is this one: “You’re not autistic, you don’t act like one” (often with reference to the Rainman film).
I especially “appreciate” that a lot of non-austistics define from their perception and judgements on my behaviour, whether or not I have empathy or ability to love. Which apparantly I don’t have!
Oh, cupcakes, if I could only grant you a few hours inside my head, you’d know that I’m not lacking empathy or ability to love.
Quite the contrary; I love a lot, with no boundaries or limits and I love passionately (and hate to equal levels if you’re a dick to anyone I love or if you have shoved my face in the shit for too many times).
And my recent melt down in a grocery store was primarily fuelled by not wanting to be a bother to other people and being afraid that the young boy at the counter might feel slightly traumatized if I went to the checkout, with tears running down my face.
And I am pretty sure that most people dealing with some sort of mental illness or condition have their own stories and realities, that shows you the other side of the stigmatised perception from abled people. People who may (or may not) have all the best intentions on the planet – but lack the inside knowledge to actually comprehend what they are talking about.
There is no harm in that.
The harm occurs when the same people consider their findings valid or true, without even bothering to run them by someone who actually knows, who actually lives it every single fucking day! That is when possible well intent becomes degrading and deminishing, as if we are not able to know anything merely because we have a mental illness or condition.
Yes, I’m autistic and yes, I do struggle with identifying and regulating the emotions inside of me.
But I do know the fucking difference between when I’m having a melt down and full blown sensory overload and when I’m just being annoyed or irritated.
So stop telling me, that you get annoyed in those situations too and how you “just” choose to walk away.
You get to choose that because you are not autistic and you are not having a melt down.
And stop being smarty pants to anyone else with mental health issues.
Stop degrading and deminishing the struggle they go through.
I get from a rational perspective that it can be hard to fathom things you don’t know and that can be the cause for misconceptions and badly placed well intent. But have the decency to acknowledge and admit that some things are beyond your grasp.
“But I just want to help…”
Then say that.
“What can I do to help?”
“How can I help you best in your current situation?”
“I might not understand exactly what you go through, but know that I am here for you.”
Sentences like that go a hell of a lot further, than if you just assume that e.g. a meltdown equals to some irritation, you have felt during a Black Friday shopping.
Just to put things on the edge here: when you do compare your irritation to an autistic melt down….
Which of us is lacking the empathy?
From Inconstructive Rant to Constructive Conversation
I have no desire in rubbing people the wrong way.
I shy away from conflicts at any chance I get and if I realise I unintentionally have caused pain to someone, I feel wretched for days and weeks.
Conflicts scare me and they take up a lot of energy. They do to most people. But a conflict stays inside my body for days, weeks and months after the fact. In that time, they feast on my energy levels.
So shying away from conflict is also a way to self-preserve, to make sure I have the energy to go about my day and not end up at the psyche ward again.
But maybe, just maybe, rather than shutting up completely, I should practise in kindly letting people know if they have overstepped the mark or have misunderstood something I have said. Maybe I should practise acknowledging that there IS a chance for miscommunication, rather than assuming that someone is out to get me.
I am often told that I have an extremely keen eye for analysing, self-awareness and spotting a matter from different perspectives. I have also been told that I can communicate my observations extremely well and make the incomprehendable more accessible to those not in the know.
I don’t know if that is true, because I don’t know how other people perceive the world. I don’t know which images these words create in your head or if the image you get is even corresponding to the image in my head, the one that I am trying to describe.
But I do know that this process is the foundation of communication. As a former manager and trainee I have been on multiple communication and teambuilding courses and a particular exercise springs to mind:
You team up with another person and you place yourselves in each your chair, with the backs to one another. Person A gets handed a simple picture. Person B gets a drawing pad and a pencil.
The first round, Person A describes the picture to the best of abilities. Person B draws, but is not allowed to speak. You get 2 minutes to solve the task and then you compare images.
The second round, you shift, so person B gets a new picture and person A the drawing pad and pencil. This time, the one drawing is allowed to reply with only “yes” or “no”, thereby somewhat signalling whether or not the message is perceived understood. 2 minutes and you compare.
The third round, you shift again. This time the drawer is allowed full communication. Meaning that instead of “no” you e.g. get to say “I’m not sure what you mean when you say “straight forward””. 2 minutes and you compare.
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If you’ve done a task like that, you probably know why I bring it up.
If not, then I can tell you that this exercise exemplifies in an extremely clear way how differently we perceive language, even though technically the words we use are the same.
Actually, I would encourage you to try it out some time.
Trust me – it’s as frustrating as it is fun and interesting.
But of all the crappy team building exercises I’ve lived through, this one is by far the one, that has taught me most about communication. And about actually listening.
It doesn’t mean I get it right every time. Nope, I have my fuck up’s like everyone else.
But it does mean, that when I sense a communication getting off the rails eg. on social media, I start looking for the parts where someone forgot to listen or where one word proved to mean something entirely different to the counterpart. It also spurs the fear of unintentionally offending or hurting other people.
But maybe I should try to trust that people who know me well enough, will also instinctively know that I mean no harm.
Maybe I should trust that if they feel misunderstood or offended, they will let me know kindly, rather than exploding in my face.
Because, in a nutshell, talking mental health awareness opens up to a lot of situations, where someone might feel mis-represented, if we don’t choose our words carefully.
We may have similar diagnoses, but the individual lives we’ve led and the core personalities we possess, determine our perceptions and conclusions far more, than we might be willing to admit.
My point being, that the words that build up this blogpost have a very distinct image to me in my head. But as this is a one-way communication, I have no chance of knowing if you “are drawing” the image I see. You have no opportunities to, as we progress, to stop me and say “sorry, but I didn’t quite understand what you meant by saying that”.
We are on round one of that exercise, I just referred to.
I am describing what I see and can only hope, that when we get to compare, the images are – at least somewhat – alike. But if you’ve done the exercise IRL at one point, you will also know that often the images are not alike.
How to Talk About Mental Health Awareness
So how DO we do it?
I believe that we all face common grounds. That there are facts in life that if not all then the vast majority can agree to, regardless of educational levels, health issues, incomes and even countries.
One common ground is that we are all under influence of the specific communicational scene we are active in. Writing, chatting, being on the phone, talking face to face, giving a public speak, lecturing – all scenes have their specific perks – and shortcomings.
In my case, the fact that I choose to write in a second language, a language that I love and enjoy working with, also creates the risk of me maybe choosing a slightly off word in a sentence, which might cause a rather big misconception of my intent for you, my dear reader.
One way to do it, that springs to mind, is honesty.
Not just honesty, as far as pointing out when you feel people are wrong, but honesty as a way of letting the other person know, that you don’t really know what they mean, by saying what they say. Or be honest, if you realise, you yourself might have messed up. Don’t wait and see if no one notice – ‘fess up and apologise. I was made aware of a use of a word recently, where my intent was to refer to the entire concept of that particular term in a short word. Turns out that this word, when added to something else can get a rather demeaning sound to it – which was not at all my intention.
But my intention doesn’t matter.
Because words matter more!
So there was, as I was made aware of this, nothing else to do but apologise and take note of the lesson learned and avoid that sort of phrasings in the future.
Doing most of my online writing in English, every now and again I encounter a specific saying, maybe slang, that I’m not familiar with.
So I ask.
Because sometimes – especially slang – constructed words can give connotations, that might not be even remotely close to the actual meaning.
For instance, recently I learned that “on the fence” did not mean what I thought it meant.
“On the fence” (and this is my visual, literal autistic mind at work) created a picture in my head of someone sitting on a fence (with the pointy fence boards poking and hurting the-you-know-what (oh for fucks sake, YES I’m talking about the arse!!)), so I have always thought that the phrase meant something like “opposed to”, “annoyed with” or “hurt by”.
Turns out the phrase includes the surroundings of that image, and being on the fence means that you have not yet decided which side to choose yet.
So you can imagine that if I made a statement like “I’d like to talk more about mental health” and someone says “I’m on the fence about that” – before, I thought they would be against it, annoyed by it – now, I know that they have not yet decided for themselves what they want to do.
And that, my dears, is a rather big fucking difference. I hope it hasn’t been the cause of too many misconceptions – but I acknowledge the possibility that they might have caused just that.
So I ask.
But to actually get to the asking part, I need the knowledge or at least a hunch that I might not have the right idea. Which is not always the case – to any of us.
Which is why it’s so important that we incorporate that third round of the teambuilding exercise in our real life communications. “I did not get what you were saying there”, “I’m not sure what you mean”, “Does what I say makes any sense?” – or “You are not reacting as I expected. Maybe I’ve not explained it right” and “I’m feeling rather hurt by that, and I don’t think that was your intent, could you explain it in another way?”.
I know, it gets rather troublesome, but I also believe that the more we get to know a specific person, the less this becomes necessary.
I’m not good with irony and I don’t catch irony well with strangers. My Lady is a huge irony master, so you’d think that this would cause a lot of trouble. And to be fair, it has been and can still be at times, because face it; my mind works on very literal settings.
But I know that if something sounds off, she is likely to use irony, because by nature she means no ill intent.
I have grown to learn and know that and read her specific tell tales better than the ones of strangers. Well, most of the times.
I throw the same courtesy at people I often communicate with online – if something sounds off and I have no other cause for thinking they’d wish me harm, I assume it’s irony.
And hope, I’m not wrong!
I have a few tips for you on how to address and talk about mental health issues. They are shaped by my personal experience and there might very well be people that disagree – but here goes:
- If you are concerned about identity-first or person-first, it is absolutely legit to ask what the person prefers. I personally use identity-first (I’m autistic) rather than person-first (I’m a person with autism) – but I really don’t care what people use about me. But not everyone feels like that, and if you have doubts, just ask.
- You will find various heated arguments online about certain terms and words that shouldn’t be used and people being offended by those words – regardless the diagnosis. In my personal opinion, never let the fear of stepping on someone’s toes prevent the conversation in the first place. I feel rather strongly about this; it seems that before we have even learned to open up about mental health, someone wants to add a number of rules to the use of language (that not everyone agrees to anyway) only creating a bigger fear for someone on the outside asking those important questions, that could give them the needed answers to actually help and support us. In doing so, we are inadvertently making it pretty tough for people to actually help us. Remember the round two of the exercise? Is it not more important that we actually get the conversations going in the first place? And when the stigma is gone and people – mostly – seem like they get illness from a mental perspective then we can start debating the proper words to use. But I am telling you right now: we are never going to agree on the proper words anyway. Just like autistics don’t really agree on whether the puzzle piece is a demeaning symbol or not. Personally, I love it and I feel like it encompasses me perfectly: but this is not shared by everyone.
- Please remember that we are living in a world, where the seemingly socially appropriate way to answer “How are you doing” is by saying “I’m fine, thanks, and you?”. If your gut tells you that something is off, then something probably IS off. Choose a private, undisturbed moment (create it if needed) and ask specifically: “I have noticed, you don’t seem like your usual self lately. Are you feeling okay?”. And if you get a “yes”, please ask again: “Are you absolutely sure?” Also note that while you may be the kindest person and have all the best intentions, it might not be YOU that the person needs to open up to (for any number of reasons) – so if you can tell that there IS something up, but the person doesn’t seem to open up to you, try asking if there is anyone, you can help contact that the person might feel more comfortable with.
- Show us the courtesy of listening to us rather than throwing the latest piece you’ve read about e.g. depression, down our throats. There might very well be things we can relate to, but there might also very well be things that are different. Remember that as far as mental health and mental conditions goes the concept of truth and knowledge is relative. One person with a diagnosis can only describe the diagnosis from a subjective perspective. We can refer to a knowledge of more people sharing the opinion, but that only tells you about the likelihood – not treatment- or symptom truths or knowledge.
- The final tip I would like to address to my fellow mental health warriors. Mostly I meet mutual compassion and support, so the majority of you will not need to hear this. But a few times I see someone lashing out and being rude, because they don’t happen to agree with something that is being said (or written, for that matter). I need to address the instant lashing out, and yes, I DO know that for some, it is not a matter of wanting to be rude but rather a symptom of your specific condition. But I am telling you this as someone who is feeling things instantly and strongly and wanting to lash out instantly too: please practise taking a few minutes to breathe – or maybe even take the night to sleep on it. Remember the communicational settings. We are sometimes caught when we are down on our knees, when we are feeling vulnerable and yes, there are definitly phrasings and statements that can set one’s teeth on edge, when we are already face down. But especially on these social media platforms, we can’t really assume anything about a person’s intentions. So before you resort to personal lash out, try to take a breath and consider other ways of responding. Like honestly saying “You know what, I got a little hurt by that” and maybe explain what is was that hurt you. It gives the other person a chance to correct a wrong – and thereby hopefully avoiding the same hurt in the future. And yes, I do know it’s a lot to ask, when already being on your knees. This is why I use the phrases “try” and “practise”. Which leads to:
- The bonus tip – and this one is for you, who is finding yourself feeling verbally attacked by someone. Because communication goes both ways – so you have every opportunity as well to stop, take a step back and examine the situation. I DO NOT condone or defend verbal attacks, but I get why it happens sometimes. And it takes two to escalate a conflict and it also takes two to prevent or stop it. So if you find yourself in a conversation where the tone is getting harsh (preferably before offense takes place) it can be helpful to stop and ask: “Have I said/written something that could offend you or make you feel hurt?”. And if the tone escalates still, then actively put the conversation on pause: “We are not talking about this in a very civilised manner, let’s revisit when we have had the chance to cool off”.
It’s Not (Always) What You Think – Signing Out
The photo at the beginning of this post was taken shortly before a grocery shopping. After a few weeks of not sleeping, caused by emotional stress, my sensory issues intensifies, leading to an increased likelihood of melt downs. That day I was particularly under pressure, and had I had a bit of my rational cool that days of good energy gives, I could’ve told myself NOT to go grocery shopping. Yes, food is necessary. But that day, I should’ve just texted my girlfriend and told her to deal with it. Because I knew even before heading out the door, that this wouldn’t end well.
The following events of a major melt down in the store and nobody reaching out to help, was perceived by me with a mind of someone on her knees, face down. I instantly assumed that I didn’t matter. That I was worthless. That people wanted me to be in pain. It took a few days of severe mental pain (and unfortunately selfdestructive behaviour) before I got clear enough to acknowledge the fact that maybe – just maybe – there were other things at play here.
Maybe some of them were dealing with their own issues and not actually having the energy themselves to be reaching out. Hell, for all I knew some of them could be in need of a hand too!
Maybe some were worried that they would intrude or invade my privacy and thinking that I might just prefer to be left alone.
Maybe some of them were scared of reaching out, for fear of making matters worse.
Maybe they were scared that by opening the conversation they might accidentally trigger potential self-destructive thoughts.
And isn’t it funny, or interesting, that most of us have an idea about what to do when someone becomes dizzy or passes out – but when it comes to mental issues, we seem to choke.
And it’s also interesting, to me at least, that the companies I’ve worked with has offered plenty of physical First Aid courses – but I have encountered NONE that has offered ANY sort of training in mental First Aid – what to do, when someone seems to be having an anxiety attack or – as in my case – a melt down.
Just like the pixels in the photo gives up an entirely different reality than what actually took place, the facial expressions and turned backs told me a version of the truth that might not be true at all.
And that is really my core message to all of you out there:
Communication, verbally, written, by images, will always be susceptive to interpretation. Everything you read or hear is one thing and one thing alone: YOUR interpretation, YOUR perception.
It’s only by actually talking and communicating respectfully that we can get closer to knowing whether or not we are in fact creating identical (or similar) images.
And with those words, I will let you get on with your day…
I know I say it a lot, but I just won’t let you forget….
Luv ya :-*
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My name is Linda and I set my eyes on the world for the first time back in the summer of 1978.
In 2017, after decades of struggling with various mental issues and illnesses, I was diagnosed with Aspergers Syndrome, an autistic spectrum condition. My most dominant co-morbid illnesses are depression and anxiety.
Born in Copenhagen, living several places throughout Denmark in my life, I’m currently settled in Northern Jutland, in the rapidly growing city of Aalborg. Here I worked a handful of years as a manager in high performance environments, until a mental break down in 2017.
Rocking the Spectrum is not a knowledge base on autism per se, but rather a peak behind the scenes, showing the life of someone autistic – in the hopes that it will help conversations and understanding along elsewhere on this blue planet.
I am not a professional health worker and any views and statements must be viewed as personal opinions and experiences only.
My special interests are languages and codes, music, books, urban gardening, animals – and writing is my way of breathing.
Proceed into the blog with caution – I swear a lot. Don’t blame my parents – they HAVE tried to improve my behaviour!