Dear Klast:

“He said I’ve spent my whole life wrestling with an invisible disability… My natural intelligence meant I was really good at masking my disability, all the way till my 50s. The imposter syndrome I mentioned before. So I’ve lived my whole life in a grey area, between appearing not disabled enough to get recognition and not being able enough to fully participate in society. Unable to engage in playing the game of life you could say“-

– I somewhat relate. It so happens that I submitted a post half an hour ago in a thread called I want to feel accomplished, before I entered your thread, and it happens to be relevant to the topic here; you can read it, if you’d like. Without using the correct medical terminology, I’d say that I suffered brain damage early on, a damage that expresses itself in learning disabilities, ADD, and Tourette Syndrome (tics) ever since I was five or six. Some needed connections between brain cells/ neuropathways were not made.

I too lived my whole life in a grey area, between appearing not disabled enough to get recognition (the visible and audible motor and vocal tics were not attended to/ did not get recognition by teachers and doctors, so no help, and because I studied so many, many hours, I got okay grades in school, so no help with learning disabilities either), and not being able enough to fully participate in society (my social life was terrible, my work history and satisfaction were poor, and I was ..unhappy, to put it mildly).

“I feel a huge relief at realising I have an invisible disability that isn’t obvious to others, I thought I was just someone severely down on my luck due to ‘fate’. Now I have a chance to get myself unstuck and try to move on“- It feels good to read this!

“Generally speaking: CPTSD is rolling life long traumas. PTSD is discrete traumatising events, like what first responders, soldiers victims of crime etc.“- soldiers spend a limited time on a battlefield (the setting where they experience trauma), a crime victim is a limited-time victim of trauma occurring at a crime scene. I was.. an unlimited-time victim, of multiple settings, multiple crime scenes, so to speak, all perpetrated by my mother (hence I would fit the CPTSD diagnosis, if it was available in the U.S., where I live.. and if there was a reason for me to pursue it).

“Some people need a label to feel better about themselves. It is similar to the concept of god, someone who people can pass their self responsibility…“- the labels can be helpful in that a person feels no longer alone (as in thinking there are other people like me), and when it comes to psychotherapy, an official label aka an official diagnosis is a starting point (for a responsible psychotherapist) in the design of a therapy plan to fit the particular patient (similar to physical medicine).

“CPTSD is the first mental health diagnosis I have ever been labelled with… Like a snowball effect. My invisible disability was the seed trauma. The resulting social isolation led to child-abuse, then the abuse led to distrust of society, which reinforced the social isolation, etc.“- I relate. The image I used to have in regard to the expansion of my mental and emotional troubles through my childhood, into and through adulthood (maybe because I didn’t grow up with snow) was mud rolling down a hill, gathering more and more mud as it rolls down, becoming bigger and bigger.

“Hope you’re keeping well“- thank you! And yes, I am way, way better than I used to be.

anita

Dear Klast:

It is amazing that you posted about your bran scan (revealing two black holes) only 10 hours before a doctor ordered a brain scan for me because I told her about my pulsative tinnitus in one ear. I hear it now, but when it started, or when I noticed it for the first time (weeks or months ago, I don’t remember) it was very, very loud, late at night. Seems like a blood vessel in my brain is either somewhat blocked or twisted, or.. I may have a tumor that’s pressing against blood vessels.. scary.

“We are those baby sea turtles that get injured on the way to the ocean. Once we get there we cant deep dive with the others very well. We mainly hang around just below the surface“- very well said. Increasingly in recent months I’ve been hanging around with others deep in the water, so to speak. It’s a very different emotional- social experience than being sad, scared, lonely and numb just below the surface.

“Don’t get me wrong, fate isn’t completely absolved. It still was the root cause of my seed trauma (prolonged febrile convulsion), and choosing neglectful/abusive parents for me. But realising this and understanding the overall effect on my life is a big relief“- who did the choosing of neglectful/ abusive parents for you? (I am not intending to argue with your belief in fate, which brings you a big relief, only to understand it better).

“Yes, I have read about how the US health system is run by the insurance companies. They aren’t keen on having new diagnoses added to the DSM“- there is a saying about understand how the modern world operates: follow the money.

“Where I live, the CPTSD label has no real effect on my life, unless I can convince a psychologist, to convince the government/insurance, that it has stopped/severely reduced my ability to do ‘my normal occupation’. How vague is that, especially when I have never had a ‘normal occupation’“- falling through the cracks..

“all through the first 30 years or so of my life, I never met someone with any sort of epilepsy. Let alone someone with an invisible disability like Arrested Psychological Development. I was constantly alone“- a human being is not meant to be alone.. or Arrested in any way.

“Now I am going to do some intense research on how to deal with APD in adults“- I just read this sentence for the first time, and again, I am amazed that only yesterday, I was ordered a brain scan in regard to my pulsative tinnitus. I also told the doctor about my Hissing/ white-noise type tinnitus, which she said is indicative of hearing loss..

anita

Dear Klast:

“I don’t touch alcohol much, because it will make the brain fog side effect, of my duty of care medication, even stronger… I drive a forklift every day at work. I know how strong the fog is because the couple of times I missed a dose, I had a minor headache but my thoughts were much clearer and stronger than normal. I feel like I am being chemically restrained from fully engaging in life, by a society that is fearful of the effects of my brain damage. Even if I change to another similar drug, my driver’s license would be taken away until the docs thought I was ‘safe’, which could end up being never“-  I am guessing that no doctor or medical facility will support you in getting you off the medication because none wants to be made legally responsible if getting off the medication was to turn out badly for you, there’s a medical- treatment protocol that they are adhering to. I am guessing that if you want to get off the medication, your only option would be to do it without medical counsel and support..?

I was on 3 kinds of psychiatric medications 1995- 2013, including a very difficult kind to get off from: Clonazepam, which is a Benzodiazepine. My first psychiatrist (1995- 2010) gave me the prognosis that I will always need these (or similar) psychiatric medications. Half a dozen of serious efforts to get off those failed. Finally, I got help from a 2nd psychiatrist, and a therapist (2011-13) and succeeded. My thinking is clearer, the fog is gone, and my mental health is way better. I have11 years of psychiatric-medications- freedom. The only disadvantage is that ever since I stopped, I rarely sleep throughout the night, it feels like a miracle when I do.

“After my BC surgery, my medical team was legally supposed to have had my license suspended. Fortunately for me, they knew how hard it would be to get it back. So they trusted me not to drive, and didn’t notify the transport department.  Something I am really thankful for. My current GP said that it was a massive breach of duty of care on their part, and they shouldn’t have done it“- that’s amazing, that your medical team was.. not afraid of legal consequences? I am glad that your D.L was not suspended because no one was hurt and it’s feels good to be trusted, doesn’t it?

“I got over that feeling when I started regularly diaphragmatic breathing, Its sort of like floaters in your eyes, you look through them 99% of the time. Now I only notice my mild PT when things are quiet, and I write it off to ‘just another brain damage side effect’“- I am thinking about cancelling the brain scan (yet to be made) appointment. Because let’s say an artery in my brain is somewhat blocked or twisted: what can be done about it other than brain surgery.. I don’t want a brain surgery for something people can live with, people like you.

“Finding my centre is how I have got myself 4 years ahead of the BC reoccurrence curve“- I hope that you can tell me more about finding your center means to you.

“I visualise BHC like a universe wide cosmic 5th dimension that we are all connected to, like the force in star wars…’… vast, interconnected webs of energy that underlie all physical reality.’ Supposedly animals tap into this directly, humans used to be able to… but we’ve pretty much lost it due to becoming obsessed with technology and ‘stuff’“- yes, I remember now: I too used to think of it as an additional dimension, a dimension that cannot be measured. How do animals tap into it..?

“Our chats have helped me to ground myself. Helped me gather my thoughts for my next therapist session.“- thank you for saying this. Typing out my thoughts in response to a quote from you, then quoting the next part and responding to it (before reading the 3rd), etc.,  makes it possible for me to think in an orderly way/ to process information.

anita

Dear Klast:

Good to receive another post from you, thank you!

“Have you tried sleep aids like Ashwagandha, or Melatonin?“- I tried melatonin and other over the counter/ herbal aids but they didn’t make a difference.

“Everything in life should be done on a case by case basis, but power and greed stop it from happening“- yes: power, greed and expediency. Online definitions: “the quality of being convenient and practical despite possibly being improper or immoral, The fact that an action is useful or necessary for a particular purpose, although it may not be fair or right”.

One form of expediency on a personal level is a person’s prejudices against groups of people: against short people, overweight people, handicapped people..  men, women, politically conservative people, politically liberal people, people of a particular race, etc. I want to fix my own personal prejudices.

I am thinking of the national and international misuse of power being on the economical-political level, and on the familial- individual level: a parent’s misuse of power against a child leading to a politician’s misuse of power against millions of people.

“knowledge is power“- I think that at times, in some contexts, denial is power. For example, when a person accomplishes the (previously considered/ known to be) impossible. Or when knowledge is too scary for a particular person to endure.

“Che sera sera ‘What will be, will be’. Worrying about something outside anyone’s control… is bad for mental health which is in turn bad for physical health“- very well said. I want to keep this in mind.

“If others reject you for the situation you are in, they were never worthy of you in the first place“- I don’t want to reject others for the situations they are in. I will reject some for how they respond to the situations they are in. I need not respond to a bad situation by creating a bad situation for another, or worsening another’s existing bad situation.

“Most people in my situation end up splitting from their partner because they start putting up emotional walls that push the partner away… I was aware of this so I made sure I didn’t. To this day we are over 20 years strong“- congratulations for 20 years strong, and a very good point!

“Animals know stuff about the world around us that we cant explain, yet. Evacuating the area before natural disasters…“- I want to read from the links you provided and respond further Mon morning (it is Sun morning here).

anita