Possibly the longest blog post i’ve written to date…
It’s taken a while for me to get to this point, but after recent events and a regular occurrence of feeling like I’m trapped in a body I don’t want to be in, with a mind I don’t want to have, I felt its about time I lay it all bare. Maybe it will help, maybe it won’t, but at this point I don’t know what more to do. Call it a confession…
I’ll start with saying I hate the term ‘hidden disability’. Hidden would imply you can’t see it; that is the crux of the problem myself and others like me have. What we are is very visible, we deal with it every day, those who interact with us experience it and very much notice it all the time. Trouble is no one understands it, most have never even heard of it.
What is ‘it’ I speak of? What do I have? Why is it making me freak out? Left wondering, how I can continue to survive in this world?
‘It’ is what is known (in the medical industry) as ‘specific learning difficulties’. To be just that – specific, I have what they call ‘Dyspraxia’ otherwise known as DCD (Developmental Coordination Disorder). *Cue the page closing by supposed friends who are sick of hearing me mention it, those who have never tried to properly understand how it affects me, my behaviour, and pretty much every area of my life*.
Now those who don’t care are gone, let’s get down to the nitty gritty of my psychological torture.
I am mentally exhausted; to be seen as aggressive and angry all the time (it feels like all the time) when I’m genuinely not, is making me loose the will to live. To be told I look vex or upset or constantly told to smile, when in my heart I’m happy, just makes me want to smash my face in to a brick wall, maybe if there is something physically wrong with my face, I could understand why people perceive these things.
How ironic is this photo? Brick wall with a single a wing… HAHA! Those who feel my pain can identify with this image.
Two of my difficulties are speech and memory. I’m forever saying ‘what’s the word I’m looking for?’, while I frantically try to pull the correct words from my mind to formulate a sentence properly. I do not have volume control, the saddest part is, as a Dyspraxic I am usually unaware when I’ve become too loud *sigh*. Imagine how frustrating it is when you think you’re talking normally but everyone around you sees you as shouting.
Let’s put these things together: Angry looking + Loud/Aggressive x by unawareness = social disaster. Mixing alcohol or any type of drugs (even strong precibed ones) in the equation, gives you a social disaster magnified x 1000; think out of control Tsunami.
Unfortunately the titles I mentioned earlier are misleading; outside the realm of education or work tests, the ‘learning difficulty’ title -although plays a role- is pretty much irrelevant, the symptoms are what cause you to fall behind in class. If you are slow to finish tasks and slow to understand context, things like reading text is difficult because it takes you forever and a century to take in a test paper and understand the questions being asked.
As I bear my soul I feel like vomiting! Cue the fanciest sick bucket I ever seen.
What I have affects my speech, my physical co-ordination, my social skills, ability to plan and organise, manage time and my spatial awareness – to name a few things. Below are a few excerpts from others like me in an online forum for other Dyspraxic people .
Excerpts taken from the forum of ‘dyspraxicadults.org.uk:
“Hi, i guess i been having negative thoughts and such since aged 14, 23 Now and last year was the worse year for me been heavy having thoughts of suicide.
Wondering if anyone else has this? i seen some facts off a site that people suffer from anxiety / depression quickly by dyspraxia wondering if anyone else has the same thing.”
“Does anyone else suffer from strong feelings of guilt that last for a few days at a time?
“I’m currently in a slump where I’m living in isolation from everyone else. It’s been that way for 5 years. I can’t figure out what jobs I can do for work, and generally feeling like a recluse. I don’t have the energy to get out of the house on my own anymore. I think this might be due to my dyspraxic symptoms. I don’t have any real useful social skills either, and I try too hard to figure out what I’m doing wrong and I feel lonely.
I am Belgian and dyspraxia doesn’t seem to be widely recognized or known here, so it may be difficult to find help
I find it weird that it is so unknown because in my experience it can lead to serious social, mental and learning problems.
– social isolation (having difficulty being around people) being extremely irritated; Can’t handle people stand close to you or touch you, it makes me feel really aggressive or scared
– extreme mood swings
– inability to control emotions or to calm myself down
– lately sometimes feelings of depersonalization and brain fog which suddenly clears up; This happens mostly in the evening (linked to mood swings ? )
– very poor memory . (both short and long term) constantly forgetting what I was doing or where I left something (ex forgetting that I am dressing myself and what to do next)
– constantly loosing things
– very poor, blurry vision
– concentration problems, problems with organizing thoughts, speech and writing;
-problems with executive functioning, unable to put ideas into actions or to organize ideas
– very poor coordination ( hard time pouring water in glass, drinking, eating, cooking, …) Sometimes this goes easier than other times;
– problems walking or taking public transport
– muscle tension and joint problems
– hard time telling whether or not you are hungry or have to pee ?
– hard time reading facial expressions
It feel like it resembles MS a bit in symptoms ?”– getting scared very easily (for example sometimes someone just says hey to me and I almost feel like I am about to have a heart attack or something
Dyspraxia overlaps with other ‘disorders’ such as Autism and ADHD, both of which are more widely recognised and understood, they are all classed as specific learning difficulties with multiple symptoms shared.
If a person with Autism doesn’t like to be touched and gets irritated by it because it makes them extremely uncomfortable, people will understand, people will get it and be conscious to not do it. A person with Dyspraxia who has the same symptom of touch sensitivity, doesn’t get the same grace of expressing this distaste. We are seen as being rude, strange, over exaggerating or worse, attention seeking.
I’ve tried countless times to inform those I value in my life, what I am and how it affects me but, it doesn’t seem to register or be taken seriously, it is always seen as an excuse for bad behaviour.
…Well screw me sideways!! You would never tell Autistic people to grow up and get over them selves because they don’t like to be touched or poked. You would never tell a person who has had a stroke, they need to hurry up, when they are doing things they can’t physically do any faster because their coordination is off and basic things like tying a shoe lace is a struggle.
Yes, these things affect the lives of a Dyspraxic daily. Many of us struggle with basic everyday tasks, many of us have created coping mechanisms to try to live a normal life but that’s all it is, a way to try and cope. The amount of buttons I’ve popped off clothes, zippers I’ve broken, cuts and bruises I’ve gotten on my gums is innumerable.
“On your gums? What? How Sway?!” I hear you scream…
Well, that is what happens when a simple task like brushing your teeth is a chore because you don’t realise how hard you’re pressing those blasted bristles. Shit I often rip my own hair accidentally when trying to put it in a hair band… How? I don’t bloody know; ask my phucked (not a typo) up touch sensitivity and poor coordination. My God, don’t get me started on the amount of self-inflicted injuries I’ve had because my spatial awareness is way off when I’m not concentrating.
Are you connecting the dots yet? If I’m not concentrating my life is a hot mess! What happens when I try to concentrate? Well… I become slow doing tasks, and my face looks like a slapped ass cause I’m so focused with completing said tasks as problem free as possible. Simply walking normally is a struggle………………………………….
So no, I’m not angry or upset; I’m most likely just trying to judge the space around me and not walk into people or step on the back of someone’s foot, or, I’m possibly trying to process and understand a conversation and respond in an appropriate manner.
Drink anyone? I love a good drink, makes me think i’m normal when i’m drinking around others cause we all are phucked… ha! How wrong am i.
When a Dyspraxic person tells friends and family these things, the usual reply is ‘lots of people are clumsy’ or ‘I must be Dyspraxic too’. Jesus! You probably just had that same thought. Do you know how patronising and dismissive that is to someone who is that way because they have a motor coordination disorder?!
I’m at a place where I don’t want to be around people anymore, I’m afraid they will start to hate me for things I have no control over. I’ve told friends to let me know at the very point I get too loud because I’m probably not aware I’m ‘shouting’; but if there is an argument, debate or disagreement, it’s rare anyone I’ve told even remembers, they automatically think I’m being over bearing and extreme because my disability is ‘hidden’. Like, look at me, I look like what is considered ‘normal’, I’m probably the most social person in my circles, always up for fun, going to events and getting involved in social activities; but damn, the struggle is real.
How does a socially awkward person live a sociable life in a world where most just don’t understand them? How does a person that shows all the signs of being mean and aggressive, prove they genuinely were not being that way and they have come off wrong? It’s sort of impossible… How can you tell the difference between a Dyspraxic moment and an angry moment if no physical violence has occurred?
It’s easy to swallow and accept if a person with Tourette’s swears constantly throughout trying to get a point across, not so easy to digest if a person shouts -‘don’t touch my food’- for what appears to be no reason. They don’t need to shout right? So how should the world deal with those who don’t know they are doing these socially awkward things?
To my fellow Dsypraxics, I feel your pain and understand how closed and isolated you feel. Unfortunately there is no ‘cure’, we can’t just stop being the way we are, our brain is wired differently, as frustrating as it is, we just have to take one day at a time and try our best.
On the bright side, because of our strangely wired (Dyspraxic) brains, we see the world in a different way to the rest of the population. Use that unique insight and tap in to your strengths; many of us are extremely creative, I find creating to be very therapeutic and its is what is keeping me going at the moment.
I cant offer any further advise because I feel beaten up and defeated… this is my story and i’m happy I’ve finally had the courage to get it off my chest.
All photo’s taken in Germany, blog post on trip coming soonish
Smooches, love and fabric xxx