2022.20 Cluster

CW: lots of medical stuff, including dismissive behaviour, and lots of bad social attitudes to neurodivergence. At ten minutes reading time, this is, without doubt, my longest ever NaPo poem. To be fair, I’ve been thinking about this piece off and on for a few years. Well, the 2nd stanza anyway – the rest came as a bit of a shock… Is it finished? Who knows…

Syndrome

Otherwise known as: a recognisable pattern of signs, symptoms, and/ or behaviours.
Otherwise known as: a set of characteristics identifying a certain type, usually adverse.
Otherwise known as: it’s probably just your age
Otherwise known as: that’s… unusual… are you sure?
Otherwise known as: when you hear hoofbeats behind you, don’t expect to see a zebra
Otherwise known as: we’ll try you on these various different medications
Otherwise known as: gosh, that’s a lot!
Otherwise known as: you’re very… sensitive, aren’t you?
Otherwise known as: a clusterfuck

Ehlers-Danlos Syndrome

Otherwise known as: EDS
Otherwise known as: Hypermobility Syndrome (various subtypes)
Otherwise known as: HMS
Otherwise known as: a complex, congenital connective tissue disorder
Otherwise known as: multiple comorbidities of joints, skin, heart, eyes, lungs, nervous system, digestive system, reproductive system, circulatory system, (auto)immune system.
Otherwise known as: prone to chronic or persistent injury (particularly joint dislocation or subluxation), lesions, joint and muscle pain, discomfort, infection, bruising, fatigue, anxiety, brain fog, fainting, dizzy spells, clumsiness, low blood pressure, receding gums, high pain tolerance, high anaesthetic tolerance, crepitus (clicking joints), gastro-oesophageal reflux (heartburn and worse), abdominal pain, bowel disorders, sleep disorders, asthma, allergies, difficulty with fine motor control, terrible handwriting, craving for salt.
Otherwise known as: wow, how did you do that?
Otherwise known as: haha, were you doing – abseiling? Sleeping?!
Otherwise known as: more commonly present in AFAB people
Otherwise known as: chronically or persistently underdiagnosed and misdiagnosed.
Otherwise known as: I went to a seminar on that once and I’m sure you don’t have it.
Otherwise known as: can only be confirmed by genetic assay
Otherwise known as: we don’t bother with genetic assay for conditions for which there’s no cure
Otherwise known as: don’t worry – you’ll stiffen up as you get older
Otherwise known as: you need to do more exercise to compensate
Otherwise known as: you are injured because you did too much/ the wrong kind of exercise
Otherwise known as: people who sit weirdly
Otherwise known as: oh, you’re so lucky to look younger than your age!
Otherwise known as: a clusterfuck

Polycystic Ovarian Syndrome

Otherwise known as: PCOS
Otherwise known as: a complex, congenital endocrinological disorder
Otherwise known as: prone to chronic or persistent irregular menstrual periods, heavy periods, painful periods, hirsutism, acne, fertility issues, patches of darker, velvety skin, insulin resistance (higher risk of diabetes), neuroendocrine disruption, hyperandrogenism, fatigue, thinning hair, hypertension, endometrial hyperplasia, depression, anxiety, cardiovascular disease, sleep apnea, miscarriage, gender non-conformance
Otherwise known as: the most common endocrine disorder in AFAB people of reproductive age (11% in the general population, but up to 26% in certain demographics)
Otherwise known as: cause unknown
Otherwise known as: bearded ladies
Otherwise known as: you can’t have that, you’re not fat enough
Otherwise known as: if you lose weight, you won’t have as many problems
Otherwise known as: great difficulty shedding fat, especially abdominal fat
Otherwise known as: when was your last period? why are you laughing?
Otherwise known as: people stop having acne in their early 20s. why are you laughing?
Otherwise known as: menstrual periods usually last for three to five days. why are you crying?
Otherwise known as: the repeated mangled anxiety of seemingly missed periods
Otherwise known as: an intersex condition
Otherwise known as: a clusterfuck

Other syndromes and disorders may or may not apply
Other syndromes and disorders may or may not be diagnosed
Other syndromes and disorders may or may not be masked by each other
Management techniques for other syndromes and disorders may or may not be helpful, just in case.

Hyperosmia, hyperacusis, photophobia, hyper… whatever the tactile one is
Dislike of eye contact, social fatigue, shyness, brashness, infodumping
Synaesthesia, vivid inner world, dislike of disruption to routine
Disconnect with social convention and assigned gender
You’re just fussy, you’re just weird, no-one thinks like you
Stop fidgeting. Stop pulling faces. Talk louder. Talk quieter.
Are you autistic? My cousin’s like you and he’s autistic, you must be autistic
You can’t be autistic, you’ve got a sense of humour and friends and a job and you’re not that good at maths
Autism is just an excuse to be antisocial
Autism is underdiagnosed in AFAB people
Waiting lists for adult diagnosis of autism can be several years long
We’re not going to refer you for autism diagnosis yet.

Difficulty starting tasks unless perfect; difficulty finishing tasks unless urgent
Difficult maintaining focus; ability to maintain focus for hours without break
Difficulty functioning without sufficient blood sugar; difficulty feeding self
Difficulty functioning without sufficient sleep; difficulty going to bed
Difficulty turning up on time; difficulty leaving situations
You’re just scatty, you’re just lazy, only children behave like this
Talk less, talk slower, don’t gesticulate so much
Are you on something? Have you got any?
Jack of all trades, master of none.
How were you able to learn how to do that so quickly?!
Why did it take you so long to ask for a diagnosis of ADHD, with those symptoms?
Waiting lists for adult diagnosis of ADHD are over a year long.
Waiting lists for adult diagnosis of ADHD are full.
We accidentally deleted your application for referral to adult diagnosis of ADHD
The irony is completely lost on us.

Executive Function

Otherwise known as: a set of necessary cognitive processes
Otherwise known as: necessary processes for the successful selection and monitoring of behaviour
Otherwise known as: processes that facilitate the attainment of chosen goals
Otherwise known as: attentional control, cognitive inhibition, inhibitory control, working memory, cognitive flexibility, planning, reasoning, problem-solving
Otherwise known as: normal adult behaviour
Otherwise known as: adulting
Otherwise known as: abruptly fucking impossible at the worst fucking time

Executive Dysfunction

Otherwise known as: a disruption or disorder of executive function
Otherwise known as: the hammer to smash the glass to retrieve the hammer is behind the glass marked “smash with hammer”
Otherwise known as: a clusterfuck

Depression leads to fatigue
Fatigue leads to depression
Depression leads to brain fog
Brain fog leads to poor executive function
The outcomes of poor executive function lead to depression

Anxiety leads to fatigue
Fatigue leads to anxiety
Anxiety leads to brain fog
Brain fog leads to poor executive function
The outcomes of poor executive function lead to anxiety

Sleep disorders lead to fatigue
Fatigue leads to sleep disorders
Sleep disorders lead to brain fog
Brain fog leads to poor executive function
The outcomes of poor executive function lead to sleep disorders

Pain leads to fatigue
Fatigue leads to pain
Pain leads to brain fog
Brain fog leads to poor executive function
The outcomes of poor executive function lead to pain

Take pain meds, which can cause depression, or brain fog, or sleep disorders
Take exercise, which can cause pain or fatigue
Take sleep medication, which can cause depression, or brain fog, or sleep disorders
Take herbal medication, which can cause confusion
Take on more work, which can cause fatigue or anxiety
Take time off work, which can cause guilt, or depression, or sleep disorders
Take assistance from professionals, which can cause anxiety, or depression, or pain
Take assistance from loved ones, which can cause guilt, or anxiety, or depression
Take abuse, which can cause depression, or anxiety, or pain, or confusion
Take neglect, which can cause depression, or anxiety, or pain, or confusion

Take arms against a sea of troubles, and, by opposing, end them?
There’s no known antidote for the unknown, and there’s the rub.

Have you tried rubbing on this unction?
Per istam sanctan unctionem et suam piissimam misericordiam, indulgeat tibi Dominus
It’s a miracle, you should try it.
Snake oil straight from the sacred pyramid
(the value of your investment may go down as well as up)
Sup from the chalice of incontrovertible wishful thinking
(it’s heresy to say hearsay)

Have you tried planning?
You should try planning
If you plan too much you’ll never get anything done
Have you tried journalling?
I love journalling.
You should handwrite your journal

Have you tried mindfulness?
You should watch this video on mindfulness
You should listen to this podcast on mindfulness
No-one uses written instructions anymore
With the amount of time you’ve spent searching for written instructions, you could have watched the video or listened to the podcast.
Okay, maybe without the adverts
What have you got against adverts?

I don’t think you’re trying hard enough to get better
I can’t possibly accommodate your management techniques
Pay attention to me
Why are you staring at me?
Why are you so weird?
Why are you so tired?
Why are you so angry all the time?
Why are you so angry?
Why are you?
Why?

That is the question.
And am I nobler in the mind for having suffered the slings and arrows of outrageous fortune?
Or just royally fucked?