Speaking Up

It is an important skill. We need to be able to express our reasonable needs and have them taken seriously.

Seriously from and for ourselves.

Seriously from our “family”.

Seriously from our “friends”.

Seriously from our government.

Seriously from services.

Too often, though, we feel that we can’t Speak Up. We fear that we are too…. something. Even when we are sure we are being reasonable when we speak up, we are told that we are too…. something.

Even when we don’t silence ourselves, it is far too easy to be told to be silent, by being told we are asking or demanding too much.

The struggle is real.

P450 Enzymes and Medication Metabolism

While most people don’t need medicine regularly, the vast majority of us have benefitted from medication at some time or other. Sometimes the medicine doesn’t seem to do what we expect it to do, and that might be due to genetics affecting the way that we metabolise those medicines. Mast medications rely on particular enzymes connected to Cytochrome P450 to be metabolised. Having a variation in the genes that control the expression of these enzymes can mean that a medication that would normally address the medical issue they have been prescribed for may either not work at all, or be metabolised faster than is helpful. Fortunately, in Australia, this can be checked by your pathologist following a referral from your GP.

Most people don’t need to do this. If your specific traits fit a diagnosis and the medication prescribed for you to treat and or manage that diagnosis is working as expected, then either that medication doesn’t require these enzymes, or your enzyme expression is within the expected type and quantity to metabolise the medication. 

Picture of various medication pills
By MorgueFile : see [1], CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=1570359

There are two major enzymes that I want to bring to your attention: CYP2D6 and CYP2C19. The kinds of medications that are affected by CYP2D6 include many antidepressants (SSRI, TriCyclic/ some SNRIs), neuroleptics, some antiarrhythmics, lipophilic β-adrenoceptor blockers and opioids {Molecular Genetics of CYp2D6 [Link]} {Wiki CYP2D6 [Link]}. The kinds of medications that are affected by CYP2C19 are antidepressants (as above), benzodiazepines, proton pump inhibitors and antiepileptic drugs, while the CYP2C19 enzyme also affects the metabolism and management of cholesterol, steroids (including sex hormones) and other lipids {Wiki CYP2C19 [Link]}.

Two important caveats before you rush out to get that gene test.

Firstly, some medications and foods can hinder CYP2D6 and CYP2C19, effectively reducing the metabolism of the medication that need these enzymes. Generally your medical professional should know that these two medicines shouldn’t be prescribed at the same time (without the intention to have one slow down the metabolism of the other) {Clinical Pharmacogenetics Implementation Consortium Guideline [Link]}, or to warn you not to consume a food that can adversely affect metabolism. Sometimes health professionals don’t know all of the medications you are taking (scripted, “alternative medicine” or not scripted), didn’t do their due diligence and check to ensure that the combined medications were not adversely affecting each other (contraindication means something else), or forgot to warn you about inhibitory foods. Substances to be mindful of include strong citrus, cannabis, St John’s Wort, ginseng and milk thistle as these can all inhibit these enzymes {Food, drink and substances affecting CYP450 [Link]}.

Secondly, for a medication to work, the diagnosis has to be correct (I’m simplifying here). Prescribing an SSRI (Select Serotonin Reuptake Inhibitor) for the depression symptom caused by certain serotonin problems can be highly effective, but not terribly helpful for people who experience depression due to unmedicated ADHD {ADHD Primer [Link]}, financial hardship or low iron. Sometimes we need to look at the root cause for the symptom we are experiencing rather than assuming there is a gene driven enzyme variance.

While I have highlighted CYP2D6 and CYP2C19 in particular as they most affect the people that see me for therapy, it is important to be aware that there are 4 other P450 enzymes that may be relevant to you: CYP1A2, CYP 2C9, CYP2E1 and CYP3AF. While all of these can be found in the liver as part of the metabolic process, CYP3A4, CYP2D6 and CYP3A4 can be found your gut wall (intestinal tract) {Role of cytochrome P450 in drug interactions [Link]}.

We evolved these enzymes to assist catalyse various important body chemistry processes. I couldn’t find any specific symptoms of gene variation on their own, just literature regarding how this affects the metabolism of medication. Modern medications have mostly unwittingly capitalised on these enzymes to metabolise medicines mostly via your liver, and in some cases in your brain {Meta-analysis Probability Estimates Worldwide Variation [Link]}.

Both the CYP2D6 and CYP2C19 enzymes are part of the cytochrome P450 system. The genes that control your expression of these enzymes can be variant in two major ways. You can have gene deletion, where you don’t have the gene to create that enzyme in the first place, or you can have polymorphism, where you have multiple copies of the gene. Polymorphism can lead to variant versions of the enzyme, some of which can significantly impact your medication metabolism {Genetic polymorphism of CYP2C19 [Link]}. Generally, most populations have between 2 to 6% chance of variance in these genes, however it must be noted that some ethnic genotypes have higher likelihood of having variations in specific directions (deletion or polymorphism) {Cyp2D6 Overview: Allele and Phenotype Frequencies [Link]} {Meta-analysis Probability estimates worldwide variation [Link]}. Separately to that, Neurodivergent people have a moderately higher statistical likelihood than their ethnic genotype of having variation in these genes {CYP450 2D6 and 2C19 genotypes in ADHD [Link]}.

If you have found that a range of the medication types discussed here are not very effective, it is a good idea to talk to your GP or Psychiatrist about the reasonable possibility that you have a P450 CYP2D6 / CYP2C19 gene anomaly and discuss whether getting a pathological gene screen for this is suitable {GP Australia, Pharmacogenomics in general practice: The time has come [Link]}. With the confirmation that your genetic expression of these enzymes is varied, your prescribing professional can factor how that can affect potential medications. Conversely, knowing that this is not affecting you can allow further investigations into whether some other factor is interfering with your medication or whether your diagnosis needs to be re-explored.

Over Emotion and the STOP Skill

Over Emotion – Identifying the Adrenaline Crash

When our bodies have all of the right biochemicals and our brains have the right neurotransmitter levels, we are a wonder of nature. Unlike other animals, we take in not only our surroundings, but also anticipate the future, guess at areas beyond our senses and make wise decisions that improve our lives. When our bodies biochemistry and neurotransmitters are out, we will often compensate with adrenaline. When the adrenaline runs out, we uses strong emotions to force our body to create new resources to keep going, which outside of a genuine emergency can be a problem.

The STOP Skill

The STOP Skill helps us to not take actions that we will later regret.

S – Slow down; the feeling of urgency in the absence of direct threat are an illusion

T – Take stock; food you take your medication, are you hungry, are you pushing too hard, do you need to sleep, do you need to change the ambient stimulation (more stimulation or less), do you need some caffeine / nicotine? Once you’ve identified what is good for your biology, do it.

O – Orientation; Now that you know the emotions are an illusion, and you have looked at the biological needs to address your neurotransmitters, what do you need to actually do now, biasing against the illusory emotions? What is presently important? Do you need to get back to that assignment, finish the project, take a bit of time out, negotiate for a few minutes, do some vigorous exercise etc. Ruminating isn’t part of the deal, if you really want to explore those thoughts, write down a brief paragraph note and talk to your therapist/bestie later about it.

P – Proceed Intentionally; It is easy to feel like you just *have* to do something that makes little objective sense. Ideally you have a Wellness Plan for this situation, follow those steps. If not, safely address the biological need, take a moment to recover your senses, then continue on with what you should have been doing if reasonable, or make a new plan when you’ve got your thinking back.

Wellness Plan: If you have a Wellness Plan [Link], build the smart decisions into it.

Identity, Dysphoria and Inclusion

When I was born, it was clear that I had certain…. attributs. As such, part of the identity that placed on my birth certificate was “male”. My presentation certainly matches “male” and so most people assume that I am male. I’ve never got a test to check to see if my biological chromosomes or base hormone levels match this assumption. This is the trio of criteria that the Olympics has formed to define “female” and “male”.

Graphic shows generic confused person; text says "who am I?"
Who am I?

Even though I’ve never been formally diagnosed “male”, I can use this as part of my identity. Heck, trying to encourage people not to use male pronouns for me is harder work than I generally have the patience for. When we do not have direct scientific medical information on a person, we often look at behaviours. When I look at how “men” are supposed to behave, I don’t find much of me in that description.

I frequently feel like an imposter for being given this identity label. Somehow I am failing to live up to the pedestal (or down to) I’ve been placed upon, and it feels like somehow that is my fault.

Identity is an interesting thing. Part of it is how you see your self; that is, how you identify you to other people. Part of it is how your friends and loved family see you; that is, how they identify you to others. Part of it is how general society sees you; and thus how you are described by them. While most people have all three being approximately the same, all of these can be quite different to each other. For some, a valuable part of their identity is how their enemies see them.

I could legitimately identify myself as a cat, helicopter, or alien. If no one else agrees with my self identity, then I will be the only one who uses that description of myself. While it is possible that others might call me ‘that person who thinks they are a[n] _____’, this isn’t the same as them agreeing with how I see myself, it is just a recognition that I do and they don’t. It wouldn’t feel validating. The difference between who I see myself as and who others see me as can be jarring.

Imagine that one day you wake up and everyone you meet calls you by a different name, and now treats you as a member of some minority group that you don’t think you belong to. For example on this fresh new day, the people I come across are now calling me Stacey, and treating me like I am visually impaired. Some young fella is asking me if I need help crossing the road, since clearly I’m blind. “Um, well actually, my name is Joshua and I can see perfectly fine, thank you – I don’t even want to cross the road, and if I did I can manage on my own quite fine”, I’d tell them. The helpful young man trying to take my elbow laughs and responds “of course you are… now let me help you cross the street ma’am”. It would feel very weird and I’d wonder what the heck has happened. After the third or fourth seemingly random run in with people calling me Stacey and being overly helpful due to my visual impairment, it would get quite concerning.

While this seems quite farcical, and it would be reasonable to question my sanity should I truly have this experience, it wouldn’t take long for this difference between how I see myself and how everyone is treating me to start eroding my confidence about who I actually am and what that means.

Just take a moment to try to imagine that.

This highlights why identity is more than just how you identify yourself. It is how others identify you and how they treat you because of that identity that they perceive. That unease at the difference in this imagined scenario is a glimpse into Identity Dysphoria.

Dysphoria has its etymological roots in the Greek words for “hard” [dys] and “to carry” [pherein], and is best understood in English as the phrase “hard to bear”, or “a painful burden”. In modern times, it is understood to mean being in a “state of unease” or a generalized “dissatisfaction with life”. In Mental Health, it can be coupled with a specific descriptors such as
– ‘gender’, that is, a feeling of unease about the state of your gender; or

– ‘body’, that is, a feeling of unease about the state of your body.

Dysphoria highlights how you feel in reaction to either the difference in how you think you are when compared to how you perceive yourself to be; or how you feel in reaction to the difference in how you self identify and how others identify you. I call myself Joshua, and on this weird day, people call me Stacey. After a while of being called Stacey, I might start dressing differently to either emphasise that I am NOT Stacey, or I might dress to go along with it. This schizm in identity will push me to change something to try to rectify the feelings of dissatisfaction.

I would like to introduce you to the concept of Neurotype Dysphoria, or NeuroDysphoria. That is, a feeling of unease in your neurological type, your Neurotype.

Neurotype is a part of the language around Neurodiversity, the recognition that all humans have brains, but they aren’t all the same brain-type; much like all humans have blood, but aren’t the same blood type. The most common Neurotype (brain type) is called Neurotypical, and those who are not Neurotypical are Neurodivergent (neurologically divergent from the biggest group, aka the typical or common group). There are many different Neurodiverse groups.

Sometimes people’s differences from the typical are clearly noticeable, and assumptions can be made that are likely fairly accurate. However, sometimes a person’s divergence is subtle to observation, or hidden under camouflage. We call this camouflage masking.

There is a very strong biologically driven social conformity drive which is call “peer group pressure”. It isn’t the explicit pressure from the group to conform to them, it is the subconscious desire to be welcomed and included that pushes us to change the way we behave and present so that we fit in, even if that goes against our instinctive nature. We blend, disguising our difference, sometimes even from ourselves. Given enough people calling me Stacey, I might start to dress like a how people expect Stacey to dress, and start to act more like how people expect Stacey to act. I might also rebel and go the other way. Either way, I’m no longer dressing and acting like what feels genuine to me.

When we feel dysmorphic we may not know why, or even that it is a consequence of identity schizm. We can often identify that we feel alone and isolated, that we struggle to be around other people, that we are anxious or depressed, and that life is a struggle. We get so used to struggling that we think that is normal and it isn’t until our struggle escalates to breaking that we can even admit that there is a problem. We fear appearing weak, so we fall back on denial and bargaining.

But what is that root problem?

If you don’t show clear signs in the publicly acceptable way that you are Neurodivergent in the ways attributed to a recognisable group, people will just tell you to conform better. In the denial of how ill at ease we feel, we might break down. We will likely be called histrionic, dramatic or needy. We may be mislabeled as schizophrenic (which is a thing, but quite different, and it is a Neurotype [or probably 3]) or bipolar or crazy.

Many people have a perfectly reasonable reaction to this invisible and unreasonable situation. Without that hard to see and understand context, the reasonable reaction (anger, avoidance, breaking rules, refusing to comply, anxiety, feelings of lost identity, confusion etc) seem unreasonable. This commonly leads to these feelings being medically recognised as borderline personality disorder (BPD*), which in my experience is most commonly undiagnosed ADHD and or Autism (and sometimes actual Bipolar Affective Disorder).

* BPD is also known by emotionally unstable personality disorder (EUPD), or mislabeled as complex post traumatic stress disorder (cPTSD). On a brief side note, actual cPTSD is a complex other diagnosis, and much like Schizophrenia is misattributed and thus often misunderstood. That’s beyond the scope of this write up though.

Back to the point.

Certain neurotypes are frequently diagnosed as a medical condition due to a common need for medication and or support, such as Autism and ADHD. Medical condition are diagnosed on how the condition makes you suffer. After all, a medical intervention isn’t needed if you seem to be doing fine. We shouldn’t blame the medical system for this, that is the nature of how they triage resources – they identify what the harm is and what to do about it. For people who are in need of resources, especially medical and social support, it is good that such an assessment can be done and resources are then hopefully made available. These resources for Autism are generally classified from Level 1 (you need some help) to Level 3 (you need constant help). There is no Level 0 (you are Autistic, but don’t need any help), because you don’t diagnose people with a medical condition that don’t need help.

Many people who have Autistic neurology are not be disabled, disordered, impaired or dysregulated. Having no discernible harm or medically significant enough difficulty due to their neurology does not make the person’s brain typical. An Autistic Person who has overcome problems due their Autistic Traits, or learned to navigate the exclusive society successfully has not somehow change their brain neurology to being typical either. Trying to get a formal medical diagnosis to be considered Autistic is both expensive and in this kind of case, very hard.

The dysphoria comes in around identity. How you see yourself, how you are seen by others, how you are behaving and how you feel you should behave – all at odds with each other.

While aspects of identity can be a medical phenomena, such as ancestral DNA, melatonin levels in our skin, height, sex, intelligence and so on, these aren’t medical conditions. We can use these identity labels without having to get that medical confirmation. These are often quite visible and obvious though, so perhaps that is fair enough. I have not been formal diagnosed as being “kind”, and yet that is often a part of how people identify me, and I am quite comfortable with identifying myself that way too. This is a “not obvious” and “not outwardly physical” attribute that was not formally, medically, diagnosed.

An Autistic brain is different to the typical, and sometimes that difference can be disabling, disordered, and the persons experience of the world might be impaired. But that isn’t required for the person to be Autistic. Yet to earn the label of Autism Spectrum Disorder, a person has to who their “impairment”, “disorder” and “disability”. As has been shown, you can have an Autistic Brain and not have these medical problems.

And it costs to get assessed. Wow does it cost (in Australia).

This makes getting a medical confirmation of being classified in the identity group of “Autistic” expensive. I don’t have to pay to be classified as “male”, or “average heighted”, “kind”, or “white enough”. I don’t have to pay to be able to identify myself as a nerd.

I shouldn’t have to pay to be identified as Neurodivergent, and I shouldn’t have to suffer to have the medical system agree that my brain works differently to the typical.

Getting a diagnosis for Autism, ADHD and other Neurotypes is a privilege that I would not want to deny to anyone who can benefit from that diagnosis, subsequent support and external confirmation of identity.

We should also not willingly join the gate keeping that the medical system has accidentally created, or the government has used to shape its policies. We should not exclude a person from their Neurotype just because they either don’t have the privilege to get an assessment, or “fail” to meet the medical criteria for a medical condition that needs help. A formal diagnosis to recognise that you are the kind of weird that fits in to your neurotype isn’t required.

While the medical and government recognition system is broken, and we do have to use it to help those who need that support; we need to be careful not to use their language for ourselves, or wear their labelling system when we aren’t interacting with them. These are tools to access a broken system, the tool and the system is not us. We must respect the people who do need to use that system and do need to go through that process.

We need to be us, not the convenient labels and criteria they defined for us.

We must embrace our identity and be proud of ourselves. We need to be welcoming of our NeuroSiblings and support our NeuroCousins.

Diagnosis is a privilege not all of us have access to, and we don’t require the government or medical system to acknowledge that we are who we are, if we give our NeuroSiblings and NeuroCousins that welcome and recognition.

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