Who we are is complex. It incorporates many aspects of where we grew up, how we identify ourselves, how others identify us, actions we have taken in the past and who we would like to grow into. Identity can be fairly solid, it can shift fluidly, or migrate through a series of stages.
Once aspect that is a key component to how we see ourselves and how society sees us is biological sex. I was going to write a big thing about it, but then SciShow on Youtube did it for me.
This episode was written by Carly Britton and covers many aspects that are worth listening to.
In short, Biological sex is not binary, it is a spectrum.
BPD is a label given for a set of behaviours combined with a number of personality traits by medical professionals when a person presents with a level of chaotic and sometimes destructive behaviours. The diagnosis carries a significant level of stigma which may lead labelled people finding themselves even more lost and abandoned than they started with. It is unfortunate that BPD is so poorly understood by many health professionals and so poorly supported within the system. Fortunately there are health professionals that are understanding the diagnosis better.
In Part 1 [this one] we will look at what BPD isn’t, and some of the many names that BPD is also known by.
In Part 2 [Link] we will look at some of the diagnostic criteria that is used when giving someone a diagnosis, including a list of aspects that I look for when determining if BPD is an appropriate label for someone’s experience.
In Part 3 [Link] we will look at what is probably going on behind the scenes that leads to the experience and behaviours that meet the criteria in Part 2.
In Part 4 (yet to come) we will look at how to tell if something needs to be done about your experience of BPD, and if so, what that might be.
BPD has a few different names. It can be called EUPD (Emotionally Unstable Personality Disorder), CPTSD (Complex Post Traumatic Stress Disorder – although there is a version of CPTSD that isn’t BPD) and PD-Bt (Personality Disorder, Borderline type). None of these labels are a good description of what is going on or how the diagnosed person experiences the label. We’ll get into that a bit later.
Frequently BPD is misdiagnosed as anxiety, depression, bipolar or schizoaffective disorder. People frequently fly under the radar (often at great personal expense and discomfort) until something occurs (often traumatic) or the ability to manage fails and the person comes into the awareness of health services. By the time someone with BPD is elevated to health services the person frequently has at least one or more of these secondary traits and is thus misdiagnosed with the trait as dominant instead of secondary. A good clue that these are secondary to BPD are a failure to actually bring real relief to the person when only using the recommended treatment plans for these conditions and not realising the proper diagnosis should be BPD.
BPD has a great deal of stigma attached to it. There are three primary reasons for this stigma. Firstly, in the counselling side it seems that the secondary traits (or misdiagnosed traits) seem easier to address first, but the standard treatment plan for anxiety and depression via medication and CBT are only mildly effective. This results in frustration for the clinician and a transference of failure to the client. The clinician failed, but can’t find fault in their treatment plan (as it is for the wrong condition). The second stigma comes from the effects of the personality disorder on staff as staff become confused about who they are dealing with and often struggle with infighting as the person’s inner chaos becomes manifest in the staff. If you have found your staff lost and chaotic and find that frustrating, imagine what it is like to live with this every day. Stigmatising the person with the BPD diagnosis is personally cheaper than realising the staff need more training in BPD staff splitting. The third most common reason for stigma is the dramatic violence often associated with BPD. This can take the form of destruction of the environment, destruction of the person’s social connections and or destruction of the person’s self in the form of self harm or suicide.
Many hospitals and facilities are ill equipped to manage people with BPD and thus try to avoid admitting people with any of the various forms of BPD unless they really have to. Unfortunately and ironically this can feed the abandonment issues that often accompany BPD leading to greater demonstrations of destruction. I very well understand why many hospitals have gone this way and the complexities of addressing this issue. It still sucks. A way to think about it is that BPD requires a certain specialisation to manage well, and not managing well is basically managing poorly. If there was a hospital or department that specialised in BPD, the hospitals would on refer patients there, but very few such hospitals exist and often hospital is just the wrong environment irregardless of specialisation. Consider the optics part of your hospital deciding they could manage your heart condition – this seems foolish, just get transferred to the cardiac ward. However there is no BPD ward, so where should the hospital refer you? Often to private therapy, away from the hospital environment.
Well that all seems kind of scary. Wrong diagnosis, lots of stigma, too hard for hospitals to handle, destructive nature of the diagnosis… While that feeds some of the issues with BPD, this is a more extreme end of BPD that gets the attention and drives the aversion and quite frankly a different recognition and management would ease a great deal of the problems.
Part of the stigma attached to the diagnosis feeds the misdiagnosis of the condition. As many diagnositians are of the opinion that BPD is chronic and untreatable, they are reluctant to attribute a person’s experience to a condition that has little hope. While these diagnosticians (GP’s, psychiatrists and clinical psychologists) are wrong on this perception, let us pretend for a moment they are right. It is much better to treat someone for anxiety and depression, which have known frequently effective treatment plans, than to diagnose someone with BPD which doesn’t (remember, we are pretending there isn’t here). If you are wrong about BPD diagnosis, you have failed to treat someone who could have got help. If you are right about it being anxiety and depression, you fixed it. With this faulty assumption, the lesser evil is to diagnose with anxiety and depression and get some positive results when wrong than doom the person with a terrible condition. The avoidance of the diagnosticians is understandable. But wrong.
The misdiagnosing of people with anxiety, depression, bipolar or schizoaffective disorder is instead of BPD does great harm to far too many people who could have got effective help earlier. It is important to point out that being diagnosed with any of the above conditions does not mean you have been misdiagnosed. GAD (Generalised anxiety disorder) is a very specific condition, and the subtypes of anxiety disorders are definitely specific conditions that frequently have very effective treatment plans (which should be tailored for each individual). The same is true for the other diagnoses. Being given one of these does not mean you have been misdiagnosed. It just might, especially if you are finding the recommended treatment paths ineffective.
All of that and we haven’t even said what BPD is. Stay tuned for next time to find out – because it is complicated.
I would seem weird if we had a hospital visit and the doctors and the nurses didn’t communicate with each other and tried to treat you for different things. While each has specific and different duties, one will guide the other which will guide the first. That is, the doctor’s diagnosis will guide the care the nurses give you, and the nurses observations will guide the doctor’s diagnosis.
Our podiatrist and dentist almost never need to talk to each other because they are working on very different parts or our health. However our Ears Nose Throat (ENT) specialist may need to talk to our dentist, or our GP may have to if we have certain blood conditions as they do have an overlap in our health. Frequently, though, we just tell our dentist the basic gist of why we might have an ENT or what blood condition we have that may affect dentistry and never the two specialists will speak.
It seems odd to me that when it comes to mental health, people are very reluctant to talk to their specialists openly or allow them to talk to each other. Confidentiality means that if you are my client, then I can’t talk to other professionals about you without your express permission. If a doctor has referred you to see me, built into my treatment contract is permission to send them progress reports. However that doesn’t cover other professionals that may be in your treatment team.
When I worked in hospitals it was clear that there was a treatment team. The confidentiality contract was with the hospital, so if it was relevant to your health, I would go to the OT (occupational therapist) and ask for them to support you with X, or let your doctor know they should check out Y, or ask the nurses to remind you to do Z and report back to me how that went. We worked as a therapeutic team to help you get out of hospital fastest. Once a week we professionals would all meet up and discuss your case and compare notes on progress. One of us (usually me) would come and talk to you about progress and your goals. Sometimes there would be an incidental meet up with professionals to discuss a thing, or with you and a few professionals. Every couple of weeks there would be a team meeting with you to discuss what is needed and what goals need to be hit to get you home and how we would get you there. (I appreciate that not all people get this holistic experience from hospitals, but that is how my team worked).
For some reason, once you are out of hospital, that all changes. We professionals don’t tend to talk to each other. There is no longer a “case manager” ensuring that your treatment is a cohesive holistic whole. And the fault isn’t just with the professionals not talking to each other – often you, the client, will hoard information and not tell relevant professionals relevant information. This can lead to two or more professionals trying to fix the same problem in non-compatible ways, or aspects about your health being missed because no one knew it wasn’t being taken care of.
I guess we kind of expect that you, the client, will be the case manager and get us all to do our bits. But how on earth can we reasonably expect you to be an expert in case management? Don’t get me wrong – some people become that expert and do a pretty good job at it, but that is often through lots of trial and error.
Frequently in therapy, I’ll ask my clients (who have just disclosed a thing to me) “Have you informed X about this?” where X is the relevant expert in that aspect. Frequently the answer I receive back is “no”, generally in a tone of “of course not”. I will ask the client to do so, then ask if they will do so and if not, what is holding them back and do they need support (it can be scary to be the one to initiate certain conversations).
What I want is that holistic care you get with a hospital allied health team, where we all know what the goals are, have a rough plan of how we are all going to get you there and a list of which bit each professional is going to work on. We then have accountability for doing our jobs and you get the benefit of that. Naturally you are involved with the creation of that plan and the goals and have a say about who and how those things are done.
I appreciate that it is hard to get all of the professionals together in one place when you live in the community and those professionals are your GP at one medical centre, a counsellor somewhere else, maybe a support worker from that agency etc and maybe a few more besides. Sometimes it has to be a phone in, or communications via paperwork. But mostly it comes down to you – start opening up to each of your team and tell them what is going on, what the other professionals are doing and what you want and need. Also give them permission to talk to each other.
There are three major levels of community need when it comes to mental health.
Entry level – two to three professionals – eg: GP and therapist (and maybe psychiatrist)
Middle level – four or five professionals – eg: GP, therapist, psychiatrist, support worker
Pre-acute level – six or more professionals – eg: GP, therapist, psychiatrist, support worker, domestic agency, community nurse, Guardian, Administrator … etc
(After pre-acute, you are in hospital, which is no longer community)
At the Entry level, all you generally need is for your professionals to send reports to each other. Ask for “Release of Information” forms (or similar) to be signed by you for them to talk to each other. Ask them to send reports and updates to all participants.
At the Middle level, beyond “Release of Information” forms, it is important for one of the professionals to start taking on more of a coordinator role. Likely that will be the therapist, but may be another.
At the Pre-acute level you have reasonable grounds to have a dedicated Case Manager, who will coordinate the goals, care and outcomes of your team. Several of your team should be able to meet up monthly or 3 monthly (depending on your needs) with a few call ins via phone/video to have an allied health team meeting. The odds are that you are being considered for or are already on NDIS, so try to factor this role into your NDIS budget.
I’ve said that this is fairly rare, that most of my clients do not have this. I suspect that this is because of a few factors. Either my clients are a bit embarrassed that they need help and don’t want to fully admit to how complex their situation is, or they don’t trust one or more of their professionals. Sometimes there just isn’t budget (time or money) to make this happen.
Embarrassment is connected to public perception. It is time to see past the attempt of the ignorant public to try to blame you for what you are going through. We don’t stigmatise eye sight, diabetes or heart conditions. Why do we stigmatise mental health? Don’t fall for their ignorance and please, talk to your therapist about why you find it hard to open up to your other professionals. If it isn’t embarrassment, it could be denial about how complex your situation is, and again, your therapist is a good person to talk to about getting over that. You are too important to let a thought error get in the way of good care.
Trust can be a major problem. If there is a professional that you don’t trust, or feel good opening up to, that can be an indication that you need to swap that person out for someone you do trust. Almost all of your team can be swapped (unless you are under community treatment orders, where you can request for a change – and sometimes you just have to work with the least bad person assigned to you). Remember that they are your employees. They have to do what you say (within their code of professional ethics), and if you don’t like or trust them, you can fire them and get another. If you are not sure about this section, talk to your therapist. If your therapist is one of the people on that list, talk to your GP about getting a new therapist. If your GP is also on that list, go to a new GP and if you like the new GP, ask for your records to be transferred.
It is your health, and the best way to look after it is for the relevant professionals to have a more complete picture about what is going on for you and for a coordinated plan to be made and implemented to sort out the problem that you are experiencing. It is time to take the power back and push for this to be done. Get those documents signed so they can talk to each other, push for that coordination, and push to be central and involved in the plan.
Ever wondered why snowflakes are symmetrical? How does the water molecule adhering to the snow flake know where to land and which orientation to point so that it is symmetrical with the the far side? It comes down to electric charges. Water has an electric charge that is not balanced. The shape of a water molecule is kind of like a boomerang, with the hydrogen atoms at the far ends and the oxygen in the bend. The oxygen has a strong negative charge which equals and cancels out the positive charge of the two hydrogen atoms. But that equal is only at a distance. Close up one side of the boomerang is negative, the other side is positive, so long as you are coming in from the right view. This makes the water molecule susceptible to electrical and magnetic fields, kind of like how iron filings will fall into an interesting pattern when sprinkled around a magnet. The snowflake is basically a water version of that.
As each water molecule joins the snowflake, the shape of the field shifts a bit to factor in this new particle. It is a dynamic system, ever changing as bits join the snow flake. Snowflakes are mostly water, but they also capture bits of dust, pollen and other pollutants. This can radically change the way the snow flake “grows”.
After a team of sperm cells break through the outer membrane of an egg and one timely sperm gets in and fertilises the egg, the embryo begins a massive growth and divide cycle, increasing in size manyfold very rapidly. Each of these new cells are basically exact clones of the first egg/sperm hybrid cell. After a short amount of time, the egg/sperm cell division starts to create some different versions, which begin to self sort into clumps of like type cells. Slowly some basic organs and nerves begin to grow. Some differentiate into muscles and blood vessels. Some begin to differentiate into skin. Most of the skin cells form on the outside. As the parent cell divides, if it finds itself unbalanced due to being on the outside, the new cells become skin cells. Sometimes the skin cell forms accidentally on the inside. When this happens, it will try to migrate to the outside, and if it fails, it will self destruct and be recycled – that is, consumed by a nearby cell which then divides into a more useful inner body cell.
There are no brains yet.
The gonad cells appear around 4-5 weeks. Eventually these will become either testes or ovaries. At this point, it is too soon to tell. We don’t know why the gonads appear where they do, but we do know they go on a fantastic journey before settling down in their eventual place in about 59 out of 60 people.
Around this time, the nerve cells have self organised into a network with a definitive spine and the first preliminary bulge at one end that could be considered the beginnings of a brain. This is not a brain. It is the hint of one.
Somewhere around week 6 some of the muscle cells have divided into a specialised type that beats in a rhythm. This will eventually become a heart and be part of pumping blood. At this stage those, they just pulse. There is nothing overly special about this. If a doctor were to biopsy some of your heart tissue from your chest and put it in a nutrient bath, it will also pulse, completely separately to any external signal. Add another bit of heart tissue in the nutrient bath and they will beat out of sync from each other. When they get close enough, they self organise and start to beat in sync. Nothing special here, just the nature of that kind of cell.
The embryo at this stage is about 4mm long. The nerves are continuing to network all of the areas of the embryo together. Pre-arms and pre-facial features are starting to develop and the embryo looks like a very strange alien or fish spawn thing.
At week 7, the growing clustered nerve ganglion at the top of the spine divides into 5 major regions and starts to specialise. This is similar to some of the earlier cells specialising into cell versus muscle. They are all nerve type cells, some are now looking more like synapses but there is no intrinsic control over the body yet per se. That is, each part of the body that was busy self organising into the things that make up a human are continuing to do so without a central instructing organ like a brain. They are working more like the snow flake, but at a much greater complexity. Each cell is emitting hormones and other communicative fluids, which attract other like kind cells. Based on rules, the cells will organise in specific but somewhat random ways similar to how a flock of birds or a school of fish will move together without a specific organiser.
The brain/nerve cells are self organising similar to how heart muscle cells self organise. In petri dishes we have witnessed synaptic cells joining together in networks and starting the rudiments of communication. There isn’t enough to have a thought, or memory or a dream, but there is some kind of organisation occurring.
This growth keeps going. At about 20 weeks we get the first indication that the proto-brain of the fetus is responding to external stimuli. It is now plugged into enough of the fetus that it receives data from outside of brain for processing and then sends a signals back out to do something about that signal. One might be mistaken into thinking that thought is occurring now. It is possible, but the odds are more likely that it has some stimuli reflex that your lower spine does when you step on something sharp. Your foot lifts off the unexpected sharp thing before the signal can reach your brain. We don’t fight for the rights of our lower spine – it’s just a reflex mechanism with some basic data analysis without actual thought. It is like saying that your knee is capable of thought when you hit it with a reflex hammer and your foot kicks. It isn’t – it’s just a reflex.
Time goes on and the baby is born. Sometimes. Often the embryo grows faultily and is expelled before 4 weeks. Many fertilised eggs self abort because they aren’t viable and many pregnancies are not detected because of this. The uterus just gets ready for the next chance and doesn’t bother to inform the owner of the uterus that an egg was fertilised and rejected.
One third of the embryos that make it past 4 weeks don’t make it past 12 weeks. Many of these pass without notice too.
Those what make it to live birth all have a brain. No two of these brains are the same, much like no two snowflakes are the same (allegedly this saying was tested and found that under certain circumstances you can get a duplicate snowflake around 1 in 100,000 – some people contest this). Humans are not snowflakes (leaving politics out of this). No two brains are the same. They generally look similar to a simple look, but the neurons and synapses do not conform to any rigid model. There are some organisational rules and principles that form specialised regions in similar locations, but the details are different.
For example, the bit of my brain that determines where my left index finger is going to be when I want to press the “a” key on my keyboard is located in a couple of hundred neurons in a part of the motor cortex of my brain. The odds are very high that you have a motor cortex in the same approximate region of your brain, and that the area that controls my left hand is about the same in yours. My left index finger control will be sort of similar to yours but importantly different. The cluster of neurons that allows my finger to strike the “a” key will be tellingly different to yours. And yet I can hit it quite well and the odds are high that you can do the same.
From a little before birth I have been training my brain to do a whole host of human things just as you have yours. But the details of how each of our brains do this is very different in specific, even if it is kind of similar in general. Somehow through all of this we are able to communicate, make art, create computers and send people into space. We are able to learn and teach each other skills.
If I were to take the bit of my brain that does a skill that I have and you don’t, and put it into your brain, it would mean nothing to your brain. It would not give you that skill. If I use that part of my brain to show you how to do the skill, you will form a new part of your brain, often coopting under used parts of your brain that are doing other things, to form a new pattern that is now your new skill, as per how I showed you. It won’t look like mine. It will probably be stored in a similar part of your brain to mine, or it may be in a very different part.
As we become adolescents, our brains switch from dependent child to independent adult over roughly a ten year period. This involves a massive reorganisation of the brain, vastly increasing the complexity as new wrinkles form, new connections are made and new skills are acquired. The hormones in our body trigger massive changes to our muscles, sex organs, height, hair and other bodily systems.
While certain developmental stages can be predicted, the specific path is unique for all of us. Kind of like if I want to get some chips from the store, I’ll grab my keys, get in the car, drive to the store, find the chips, pay for the chips, drive home and then eat the chips. Assuming you don’t have chips in your reach you’ll go through a similar approximate process. However if you do it exactly the way I do, you’ll probably crash into furniture before you even get to your car, and should you drive exactly the way I did to get to the store, it will be bad. Instead, you’ll adapt the approximate system to your needs and your situation. Generally it will look the same, but specifically it will be different.
This gets interesting when we start looking at how brains work. We know that serotonin is an important neurotransmitter for certain tasks. When you have too much or too little it can look like anxiety and or depression. How much is too much or too little is determined by the individual symptoms of the person. I may be functioning fine, but if you have my levels you might be chronically depressed. We don’t have a set amount you are supposed to have – we have a range of “probably good” (not that we tend to bother measuring the amount, we just treat the symptoms). If the amount is a little out for you, then you’ll show a bit of behaviour that reflects that outness. If you are a lot out, you’ll exhibit strong symptoms. If you are very far out, you’ll have other problems.
This also makes it tricky when we are trying to define rules. Some people pick up implicit rules easily. Most pick them up easily enough. Some struggle a bit and some struggle a great deal. This is because all of our brains are different. There is no faulty neuron causing this, and probably no specific neurotransmitter. The odds are it is a shaping of the brain from birth (that’s what the science is currently telling us), which has the most likely origin in the DNA that the combination from the beginning formed – the sperm/egg cell. If your parents found it easy to pick up implicit (not clearly stated) rules, then you probably will too. If your parents struggled, you probably will too.
Basically, brains are awesome. I love that we all have different brains. I also find it kind of surprising how well we humans interrelate and interact considering these differences.
I also find it interesting when some people don’t accept that humans are a grouping of very different brains, or when people think there is something fundamentally wrong with their brain.
Different isn’t wrong as no two brains are the same.
Sometimes our parents or other close family are not the supportive people we deserve. It is hard for me to be able to say how common this truly is, after all, if you had them, the odds are lower that you would see me for therapy, and if you didn’t the odds are higher. Letting go of some of the negative or unhelpful people in our lives is a hard but frequently necessary step.
This isn’t to say that all mental health issues are caused by parents – Freud was wrong. Mental ill health can be caused by a number of factors – genetic, enviornmental, biochemical, drug induced, organic brain damage, poor parenting, situational stress, ongoing trauma and so on. Parenting is only one of these, and a person may experience several. Good parenting can help minimise the impact of several of these, while poor parenting can exacerbate them.
Parents are not the only people who can have a strong influence on how you think mental health and your own self esteem should work and be handled. Other blood relatives like grand parents, who came from a quite different era, can give awful advice, your current social group can be bad for you and sometimes work mates are just completely unuseful to you.
Certain people seem to be of the opinion that mental health, managing stress, choosing the right thing and being functional are all a matter of will power, morals and some knowledge that you are supposed to just have.
They are wrong.
We don’t live in isolation. We live in complex systems that sometimes fail us. As listed above, that failure can be a situational distress, an ongoing trauma, biological in nature or some other thing that has nothing to do with will power or moral judgement. This doesn’t exclude the occaisional person who is suffering through bad choices – consequences can be hard – but is to highlight that most people who are struggling and need help are generally struggling through things they didn’t chose or control, and being patient and waiting for it to be over is not enough.
These unhelpful people tend to fail to pass on good self management skills, good skills for managing other people and healthy ways to see the world. In short, they make shit parents, friends and colleagues.
Fortunately, as we get older (around 15 or so), pathways open up that allow us to learn from people besides our immediate family. We get to chose our own family, our own community and our own friends. We can go and get some professional help for the tricky bits, be inspired by awesome people for the general model of how to be, and go on a self discovery journey.
By no means is this journey easy. It is really hard. It means going against all of those lessons you trusted as you grew up, recognising that not only were you led astray, but that those who raised you were also led astray and they just got lucky. After all, people who see the world this way weren’t just born that way. Recognise their limitations in being the parents you deserve, their limitations in being able to support you and move forwards with your own path. Sometimes that means leaving them behind. Sometimes that means visiting them. Rarely it means retraining them.
The world is big. It is complex. It is made of more than one kind of people. There generally isn’t a “better” or “worse” kind of people (except nazi’s – they are just worse), there is just different. Some are tall, some are short, some have blue eyes, some are left handed, some have different kinds of blood, and some are very typical of the local group and some are a bit atypical of that group. They are all valid. Don’t blame neurotypical people for being normal, it isn’t really their fault. Once you learn to recognise your “self” and how your differences make some things easier, and some things harder, it makes it much easier to start adjusting to how other people may be.
The long and the short of it is, you are a different kind of people to your parents, or family, or friends, or colleagues (basically anyone that is giving you the “just try being normal”, or “toughen up”, or “moral weakness” or “willpower” style of line). They are, in this case, wrong. Don’t feel that you have failed to be them, and don’t listen to their wrong advice. Learn who you are, and find people who are your kind of people. Be inspired by those who seem to have it together and learn how they do it. And don’t hesitate to get some professional advice to get over some of the erroneous messages, skills and ways of thinking that you were raised with.
It is important to separate the psychosocial consequences of societal stigma from the actual experience of having ADHD. Stigma is a result of how society or individuals see you, judges you and thus treats you. It is natural to experience some secondary problems as a result of this social bias that would disappear if society did not view ADHD in the negative.
In this post we will be looking at Stigma.
Often people with ADHD are told that their method of solving problems, of being them, or interacting with others is wrong. It only takes a few times of being told off before anyone will become a bit nervous about taking action for fear of the inevitable telling off, rejection or looks of disgust. This fear and hesitance of being judged or mistreated is often mistaken for anxiety and this can be the first diagnosis you are given, rather than the practitioner looking deeper at why you are anxious. It is important to note that if people around you had accepted you to start with, or began to accept you now, that the anxiety would fade.
There is a fair chance you are focused too much on what other people are going to think about you and seeking their approval and acceptance. Rules of thumb on this are : is your action going to hurt you or another, if so, rethink. That’s about it. Also note, some people will accuse you of hurting them in order to control you, and some people will inform you of the hurt you are actually creating. Separating these two groups is really important. Regular counselling is good at helping you create an internal rule set you can apply to navigate this.
It is okay to make mistakes. So long as no one (including you!) is hurt, then you can learn from this. If you keep making the same mistake, then that is another problem.
It is common to develop a need to be perfect in order to try to satisfy another person because of someone we thought we needed in the past who had impossible standards. Recognise who this person or these people were and realise this is driving your impossible standard now. Practice making mistakes and being okay with it.
There are many valid ways to do things and just because the person you are helping picks one that isn’t on your list doesn’t make it wrong. However that doesn’t mean that people are going to just accept that either. It can be hard for someone with ADHD to perceive how their actions are going to affect others, or why perhaps their choice is invalid for complex reasons. It is important to have built some trust and in a non-judgemental or person-critical way inform the ADHD person that there may be a problem with their choice or actions, to offer suggestions of what to look out for and suggestions on how to avoid that. The person you are helping may accept your variant, go ahead and make mistakes, or go ahead and have everything work out fine.
If the person wants to know more before acting, then by all means go in depth on looking at the assumptions and methods you have used to get to your solution and what rang alarm bells for you on theirs.
After a while of being told we are doing things wrong and receiving disgust, we may instead (or also) feel welcomed and without a place to belong. This can lead to depression, where nothing has any meaning anymore. Another path to this secondary diagnosis (which may also be your first diagnosis as this is easier to recognise than some forms of ADHD) is fatigue from anxiety, or fatigue from caring about people who don’t understand ADHD. The last most likely variant of depression is related to anxiety – in fear of misunderstanding you have learned not to act, and this non-activity looks like depression, but is actually anxiety as described above.
Disgust is a powerful force. It is an important social emotion we detect in others so we know we are conforming adequately to the group to avoid being rejected. Feeling rejected can leave us feeling worthless and without purpose. We are both biologically wired to want to fit in, and raised to believe that our family and early friends should accept us for who and what we are. Without that acceptance we can feel incredibly worthless, unlovable and without a place to feel is home.
Not all people are wired to accept others. Many neurotypical people traditionally struggle to accept variation in humans – take a look at the stigmas created by race, religion, left handedness and height. Start to recognise that some people are not going to accept you simply because they can’t and stop trying to win recognition or understanding from them.
Instead start to look for those who can and will. When you meet them, try not to be an asshole and test the boundaries of their acceptance. That leads to a self fulfilling prophecy of doom – eventually all people break. Once you have worked out a set of internal rules for reasonable social behaviour, find those who accept that and stick to it.
Also note that society is getting better. Again look to race, religion etc. In Australia racism is illegal, gay marriage is now the law, left handedness is now accepted as normal human variation and so on. It isn’t perfect, but it is progress. In a similar way, ADHD is becoming more normalised in society’s eyes.
Accept the person you are supporting for who they are, but make it clear what behaviours are detrimental to you and which behaviours you believe are detrimental to them. While love and acceptance may not have boundaries, self care does and it is important to have reasonable limits. Recognise what it is about the person you are helping that prompts them to feel isolated and unwanted and see if you can either directly accept that, or put in some agreed upon safety management plans to minimise the risk of those aspects. Accept your person for who they are.
Low Self Worth
While anxiety and depression are part of this, those have been dealt with specifically above. What is left is the illusion of low intelligence, and the risk of abuse from others.
The school system is not set up for people with ADHD, and as such it doesn’t do well to either educate or test people with ADHD. While schools are now getting much better at spotting ADHD, those who don’t have a kinesthetic component (physical movement) are often missed, especially in those who appear female. Recent research is indicating that the genes most likely linked to ADHD don’t discriminate on sex chromosomes, and better research is indicating that XY chromosomed people are often missed in being detected for ADHD.
Consider being tested on what colour ruby is. If you had been taught about crystals, or were from a high socioeconomic neighbourhood, you would probably answer “red”. If not, then Ruby is a person you know, and you would answer accordingly. The test is poor because it relies on testing what you were taught, then holding you accountable for being taught poorly. Recognising this error in testing is the reason this question was taken out of the IQ test for youth in the USA. Our school system is often not teaching people with ADHD well or at all and then blaming the student on this.
Your intelligence is not tied to your IQ score or your school marks. It is far more complex than that. IQ scores only test how well you score on IQ tests, which can sometimes have interesting results, but don’t necessarily indicate your actual intelligence. It is time to start letting go of the ways other people measure neurotypical people and start realising those tests don’t apply to you.
The real question isn’t how smart you are, but what kind of person are you? Separate yourself from other people’s judgements and start seeing yourself for what you are doing. Are you proud of yourself? If so, good. If not, adjust yourself until you are.
Trying to be accepted by others can make you vulnerable to being abused by those who wish to take advantage of you. Not all people are nice, and not all people are nasty. Most people who have grown up with ADHD have been messed around enough by others that your red flag (trouble) and green flag (safe) detectors are a bit messed up. Go and get some counselling to help learn what good red and green flags are when you judge others. Once you have identified those who have lots of red flags, start making changes to protect yourself from the ones you can’t get rid of, and get rid of the ones that you can.
When raising someone with an ADHD diagnosis, it is really important to look at the environmental messages your person is receiving and balance that with clear signs of affection, love and acceptance. Ensure you teach them about detecting red and green flags in people and then how to extricate themselves from bad relationships. By all means seek some counselling yourself or do some research yourself to learn good methods.
If the person you are helping is an adult, then support them to the realisation that their upbringing may not have given them good data. Avoid just outright contradicting their mistaken beliefs as that is more likely to prompt them to dig in their heels to protect the image they have of themselves. Instead work through the logic of where their beliefs came from and help them question the validity of that themselves. Help your person to see new ways of measuring and testing themselves without the stigma bias of the past.
ADHD (Attention Deficit Hyperactivity Disorder) is a complex condition that affects how you focus, behave, feel and interact with people. Realising that you have the condition allows you to begin making intelligent adjustments to your variant.
There are two primary methods to manage ADHD, and it recommended to use both where relevant and possible.
CBT and DBT are the better methods to manage ADHD from a therapy and egocentric perspective. That is, with some suitable help, the person who meets the criteria for ADHD can learn to manage the symptoms that earn the label.
CBT (or Cognitive Behavioural Therapy) is a method for identifying specific problems and countering them with specific solutions. This looks at identifying the problematic behaviour and or thought process and developing a specific skill to address this which changes the behaviour or thought process. The advantage of this method is that it address unique presentations and develops unique solutions to meet the variance of the client. That is, it doesn’t give you a one solutions fits all, but it may take advantage of known useful tools.
DBT (Dialectical Behaviour Therapy) was initially developed to treat BPD (Borderline Personality Disorder) in a specific course like way. The course happens to also be very useful for learning to regulate mood dysregulation (a common experience for people diagnosed with ADHD) and social interpersonal skills (another common experience). While specific parts of the DBT modules can be used in isolation (DBT informed therapy/therapist), most people gain the most use by doing the entire course in a group (may not be compatible for all people).
Advantage and Disadvantage of Therapy
Therapy is useful for addressing expected or identifiable skill deficits, giving power of control back to the individual who is often experiencing a chaotic life due to a lack of, or poor use of, life and self management skills. The problem often comes in with a basic aspect of the disorder itself – difficulties concentrating, difficulties sticking to a task and frequently learning disabilities. It is hard to learn any skill with this interference.
Medication is often used to help manage a major component of ADHD – task prioritisation. Given the hyperactive nature of ADHD, it seems odd to prescribe a stimulant. The brain is a wonderful and complex organism. While the specific parts that affect all people with ADHD are likely to be different, some common differences are found in the insula and the anterior cingulate cortex. The insula is often attributed to mood regulation and the anterior cingulate cortex is often attributed to attention. Both of these are frequently found to be smaller in people diagnosed with ADHD (more research required). It has been found that certain stimulants boost the abilities of these parts of the brain, compensating for their underperformance. That is, the underperformance of these two parts of the brain means the patient is likely to find their mood and attention span poorly self controlled; stimulating these parts increases the patient’s ability to self regulate, decreasing the most problematic symptoms.
If all brain scans had shown an equal problem with all people fitting the diagnostic criteria, this would be known as a neurological condition and the question would only be “how much of this one medication to prescribe?” Each brain scanned is a bit different, and not all people that fit the diagnostic criteria that were scanned have the same regions undersized. This means that medication is not going to work for all people who fit the diagnostic criteria, nor will the one type of stimulant match all peoples needs.
As such, a range of different medications have been found to be differently effective depending on the specifics of the individual person.
A very common co-occurrence of ADHD is drug addiction. Stimulants such as caffeine (coffee/tea/energy drinks), amphetamines (dexies, speed, meth amphetamines, ice) and nicotine are often used to help increase focus, while sedatives such as alcohol and diazepine are used to calm down from being hyper, and psychoactive drugs such as THC and LSD are often used to create an alternative state of mind that is easier to manage. Each of these are often used in conjunction to just self manage an undiagnosed condition.
Someone with undiagnosed adult ADHD who has a co-occuring Substance Use Disorder (SUD) will frequently struggle to be given a prescription for ADHD medication as it is either easy to dismiss the person as drug seeking (which ignores how easy it is to get illicit drugs compared to prescription), or difficult to manage due to the patient often continuing to take illicit substances. In Australia, psychiatrists are the health professionals who must diagnose and prescribe ADHD and ADHD medication. It is not uncommon for the patient to have to “go clean” prior to receiving necessary medication to manage their symptoms, which is incredibly hard; or to get frequent drug tests to ensure compliance with medication in the absence of illicit drugs.
Medication doesn’t work for all people diagnosed with ADHD, and when it does, it doesn’t always work equally. Going through various medication trials can seem daunting and frustrating as your body adjusts and adapts to the medication. Some people find medication as a gateway to illicit substances, however most people with undiagnosed ADHD have already attempted to moderate their experience via illicit substances, so this is a bit of a chicken and the egg fable – for those who are compliant with their prescription, this doesn’t seem to be an issue. Using medication to feel better and function better can have an existential query of “Who am I really? The person on medication, or the person off it?” or stigma questions such as “why does society only treat me alright when I am on the medication, but then blame me for taking medication to be ok?”
An advantage of medication is that when it works, even partially, it makes a profound different to your experience. It can be the launching pad for effective therapy, it can quiet the more destructive impulsiveness and it can allow you to focus enough to earn a degree, get a job and have good relationships with people.
BOTH Medication and Therapy
The best results often come when a person uses both approaches – medication and therapy. A person experiencing ADHD is likely to struggled to be able to focus and retain the information and drive to take in the therapy that upskills ADHD management without medication, while someone who takes medication now has that capacity to upskill, but doesn’t have a good mentor and guide to learn what skills are actually useful.
A good combination of both medication and therapy addresses these issues and gets the best results.
ADHD (Attention Deficit Hyperactivity Disorder) is a condition that many people experience, even if it is undiagnosed. It can often be mistaken for anxiety and depression, behavioural problems, autism or cognitive impairment. Most write ups fail to describe what the condition is actually like, only citing medical criteria.
Below are some views from people who have been given the diagnosis of ADHD.
Sometimes I would hyperfocus – do a thing obsessively until it was done. That hyperfocus is the reason I never thought I was [ADHD]. It helps to drown out the “noise” when there’s too much to think about or it’s too overwhelming. Prioritising can be challenging too. This is why I end up with mount foldmore [laundry].
I described it as my brain is like a pinball machine. I cannot type or speak as fast as my brain and that is frustrating for me. I’m constantly flitting from one thing to another, when I walk into one room to do xyz I see something else and get distracted by that. This results in many unfinished chores/projects. I particularly find it difficult to finish tasks I find boring, though I can obsess over tasks I find interesting. This makes life balance difficult.
It can waste a lot of time being so easily distracted. I used to wonder wtf was wrong with me. Everyone else can do it, why can’t I? I’m educated, intelligent, capable. The tasks are not difficult tasks. It can be incredibly frustrating.
Quite often I cannot get from one end of the sentence to the other. I will go off on tangents, at some point realise I’m rambling, then ask what the original point/question was. I am sometimes perceived as being rude because when someone says something I want to react, and can butt in before they are finished speaking. I’m not trying to be rude or not listen, I am just enthusiastic and if I don’t spit it out then and there I will get distracted and forget it. I forget things nearly every time I go to the shops. If it’s not put in my diary immediately I will forget it. It feels like most people live slower than me. They have a relaxed demeanour and an ability to finish tasks that I don’t understand. I don’t and can’t sit down and relax. That makes me anxious. I need to do SOMETHING, anything. I prefer written text over spoken word because I am able to review what I have said first.
Hammy from over the hedge on red bull is a very good representation of how I mostly feel. Meds help, a lot. They also illustrate my differences as I notice when they wear off. I’ve asked others for outside perspective and they said that’s just how I always was. It was only once I started my meds that I realised just how much different I am. That took some processing and support from very good friends.
Scattered, or as my friends and I call it, “squirrel”, is not an occasional thing – it’s every moment of every day. Have you ever walked into a room and wondered why you came in there? I do that ALL the time. Whereas others may remember after a moment, I have to backtrack to where I was to remember. Or more often than not I see something else and get distracted doing that. Until I walk back into the other room, see what it was that prompted me to go looking for something and go back to get/do it.
I have strategies in place to help. Like my keys go here, my phone goes there. I don’t have to remember where I put them because they have a specific place. I write lists. Appointments go in my diary. If they aren’t in there with reminders then I will forget.
On meds I slow down. It’s not that I do things slower, though I do talk slower. It’s that I’m able to stay on task and stay focused. I can finish a sentence without getting distracted. For those that know me it’s very obvious when I have skipped, or when they wear off. Mine wear off about 6pm. If you are here with me from before that I’ll be talking normally, then over about half an hour I go to 1 million miles an hour. When I realise (usually when someone says something) sure enough I check the time and it’s between 6-6:30pm.
As someone without medication, 3-5 thoughts a second, can’t focus on a single thing, forgetting where you put something 5 seconds ago walking into a room, “what am i doing in here”
— T About a decade ago I was “diagnosed” by a GP with anxiety +/- depression. Recently I was re-diagnosed with ADHD and I am using medication for it. My psychiatrist thinks that the anxiety is mainly a result of coping with unmedicated ADHD. I’m inclined to agree with her as I’m now fairly stable on long acting dex and have been able to come off SSRIs [anxiety/depression medication].
I’m a good example of how inattentive type can easily be missed, especially in girls. I’ve never been overly physically hyperactive (but I am mentally and sometimes verbally). I’m still unpicking how much camouflaging I’ve had to learn in order to function and realising the emotional costs of that.
Some interesting things for me have been:
learning about hyperfocus and how it relates to inattention. It’s really the adhd superpower and most people don’t know about it. It helps to account for my awesome research skills but has drawbacks for interpersonal relationships.
the flip side of that is the intense antipathy I feel to things that don’t interest me. Housework is almost physically painful at times. I never realised how abnormal this degree of dislike of tedious tasks is.
rejection sensitive dysphoria is really really horrible. I’ve mostly learned to make friends (this took an active effort to change myself in my early teens) but still sometimes put people off and can’t always pinpoint why. I can very easily tell when I’m annoying people however and it spikes my anxiety something terrible. It’s very very hard for me to not care about what people think
Medication has been helpful, but with some challenging side effects. I’ve always had trouble getting to sleep at night, my brain runs at a million miles an hour. If I imagine a swing swinging, I often can’t get my brain to stop the motion. The first day I took dex, I felt physically energised but that night my brain felt calm. It was amazing!
Medication helps me focus more consistently and work on tasks that I need to, not just ones I’m interested in. The short acting dex had some pretty nasty physical crashes later in the day as it wore off. Long acting is better for me in that respect. It’s also helped me moderate my eating, not just by suppressing my appetite (which it does and can be annoying), but by reducing my use of food as an emotional crutch. Interestingly still, the less sleep I get, the more my diet goes to shit. Having kids certainly exacerbated my symptoms.
Ultimately I see the diagnosis as helpful. ADHD is poorly named and badly understood but has some positives. The hyperfocus for one. Also likely a tendency towards and enjoyment of creativity. I love brainstorming and coming up with creative solutions to problems and that seems to be more common in folks with ADHD. The emotional sensitivity can be painful, but can also be helpful in various situations (interestingly a lot of people I know with ADHD are heavily involved with charities, not for profits, goodwill projects and similar).
Another thing that may interest you. I first learned I may have ADHD by reading an article a friend linked to on FB. I was reading it to be a good ally, but then it sounded awfully familiar. Like they had cameras in my house! Both my GP and my counsellor were very dubious (my counsellor sees other people with ADHD, I gather they mostly have more challenges with it). But my GP wrote me a referral and my psychiatrist (who specialises in ADHD) had no hesitation diagnosing me after a thorough assessment.
Ultimately I do want to go public with the diagnosis, but I still have some unpacking to do first and I want to make sure as much as possible that it can’t be weaponised against me.
Public perception is often about blaming people diagnosed with or who fit the criteria of ADHD for their behaviours. People are accused of not trying hard enough when they don’t stick to a task, for being impatient when things go wrong. They are blamed for not taking things seriously when they don’t recall, or prioritise what J Average thinks is important. People are blamed for misbehaving when they haven’t managed to develop some level of impulse control.
People who take medication to help their ADHD symptoms are often seen as weak or drug addicts. This is odd as we don’t blame people who take diabetic medication to manage their blood sugar as addicts, nor blame them for having hyperglycemic or hypoglycemic incidents without their medication. Yet we want people who experience ADHD to manage without because of some judgement about their medical condition.
This creates a damned if you do take medication and damned if you don’t if you act out. People often feel justified for defining people diagnosed with ADHD or experiencing ADHD symptoms as naughty, misbehaving and annoying. A moral judgement is passed, as if this were a choice.
No all public perception is like this, there are many allies out there who comprehend that ADHD negative behaviours are not the fault of the individual, but rather are a side effect of insufficient support, understanding, and or treatment. Allies understand that changing the way a thing is done, or explained, or presented facilitate the quality of life and experience of someone with ADHD, but are also quite willing to call a person on bad behaviour, or point out boundaries that should be considered.
So what’s it like being a carer for an ADD child. Before he gets his meds in the morning and when they wear off in the evening he will not focus, it is hard to get him to do as requested as he is often in the midst of something he finds very important. This thing may be trivial to me but to him it is the world.
There are times when he will be willfully defiant too. Even if I get his attention, it will still take multiple repeated times of asking him to do as requested such as getting reading for school.
Before he started on meds, his school work was lagging seriously. It was a chore to get him to write (mostly as I think it was hard for him and he couldn’t focus on the task at hand). Now, on the meds, homework and school work is much better. He still struggles to finish work given to him, but will readily attempt to write and read now. He once told me, the pill helps me to hear what people are telling me.
His massive temper tantrums have lessened while he is on the meds, he is more compliant with requests, less easily distracted (still is a bit but what 7 yr old doesn’t get distracted).
ADHD (Attention Deficit Hyperactivity Disorder) is the most commonly diagnosed “disorder” applied to children. It affects children, teens and adults. It has high prevalence (5 to 8 of 100) and is a condition that is poorly understood. It can be difficult to manage, especially if the condition is misunderstood and mistreated.
ADHD describes a condition of low attentiveness (thus the Attention Deficit part of the name) caused by hyperactive brain activity that sometimes also affects the motor section. Common side issues of ADHD is doing behaviours with low regard to consequences and emotional dysregulation (mood varies chaotically and can be hard to control).
People diagnosed with ADHD often describe it as trying to work out what is the important thing to do, when that thing over there is more shiny, and now that, oh and look over there… Prioritising, concentrating and sticking to a chosen task is hard, while being distracted and becoming engrossed (hyper-focused) on an unimportant task is common.
The average adult has a 20 minute window of concentration, the average university student has evolved a 40 minute window of concentration. The average adult diagnosed with ADHD is about 5 and can train up to 10 minutes. If you can’t fit a task that isn’t shiny into 5 minutes, it won’t get done. Shiny is a personal definition – what is shiny for me won’t necessarily be shiny for you.
Working with someone with ADHD can be frustrating as they don’t stick to a task for as long as you want them to, get easily distracted by something else and seem to have a very different idea about what is important. Often we take out our frustration on the other, forgetting this this is frustrating for them too. Imagine knowing you need to do a thing, it is vitally important, but your brain just won’t let you. It’s like “I need to do this thing – I roll my two 6 sided dice to see if I do it, if I roll twin 6’s, I get to do it… and I guess I’m doing some other random thing instead”.
ADHD vs ADD
Originally there were two conditions – ADD was used to describe people who seemed to fade out, or would easily get distracted, while ADHD was used to describe people who fidgeted, couldn’t sit still and were full of energy. While both of these were noted for attention deficit, it was considered to be two separate conditions.
In modern times it is recognised that these both have the same root cause (mostly) with different presentations. As such, ADHD has three subtypes – inattentive (classic ADD, now called ADHDi), hyperactive-impulsive (classic ADHD, now called ADHDh or ADHDhi or ADHDk) and combined (ADHDc). Many practitioners still use the old terminology to distinguish the subtypes – with hyperactive (ADHD) or without (ADD).
Prevalence and causes
In children under 18 years of age, 7.2% of people fit the criteria for ADHD. This will vary a little based on country and screening tools. This statistic is pulled from a meta analysis of 175 reliable studies.
Unfortunately adults with ADHD have not been as well studied. Studies in Europe, the Middle East and the United States of America indicate a likely 3.4% of people fit the criteria for ADHD.
Some of this variance from childhood may be the end of puberty defiance, or it may be that the adults have learned how to temper themselves better and camouflage their experience. More study into this is needed.
Another confounding factor is that children are often screened by asking the parents questions. Parents who come from a stricter background are likely to over-report difficult behaviour, not necessarily because the child has a disorder, but because the parent’s definition of reasonable is variable.
While a specific gene has not been located for ADHD, it is well known that ADHD tends to run in families. It can also spontaneously appear, especially in the presence of certain pollutants, premature or underweight birth and brain damage. While ADHD is unlikely to be a learned behaviour, some environments promote ADHD symptoms over others.
What this amounts to is that in any group of 20 people, you are likely to have between 1 and 2 people who are likely to fit the criteria for ADHD. For most classrooms of 30 kids, you are statistically likely to have have two people who fit the criteria. Many schools will note these youth and put them into a specialty class that doesn’t actually address the ADHD issues well, but mostly aim to contain the disruption these youth bring to from the rest of the class. This does not help people with ADHD symptoms to learn to manage themselves, it promotes self blame and lowered self esteem.
As many as 65% of people who fit the criteria for ADHD also have a co-occuring (comorbid) presentation with at least one other condition, around 25% of people have two, and some have three or more. It can be difficult to determine if these other conditions are parallel (happen to be in the same person at the same time) or secondary (one promotes diagnosis of another).
Most common co-occuring conditions in children:
Oppositional Defiant Disorder (ODD) and Conduct Disorders (CD)
Specific learning disorders (language, learning and motor skills)
Autism Spectrum Disorder (ASD)
Most common co-occurring conditions in adults:
Anxiety (General Anxiety Disorder, Social Anxiety, specific phobia)
What this amounts to is the fact that people trying to manage ADHD symptoms are often also trying to manage other things as well, each of which often requires specific methods to manage, some of which contradict.