Specialists and the curveball of PTSD
Note: the below is an amalgam of several different specialists.
Here I am.
In a specialist’s office, discussing the perplexing new symptoms riddling my body.
Intimidated by specialists, and never having met this one, I’ve no idea how this is going to go, but in minutes it’s obvious that he’s read through my file, mentally jotting down every question that could possibly be asked about every illness I’ve had over the past several decades.
The man is reassuringly thorough.
However, although it’s mentioned in my referral, I suspect that like too many before him, he’s underestimated the curveball of PTSD, a condition which makes me distrustful, mixes past with present, and scrambles my thought processes, concentration and memory.
All of which are problematic when it comes to medical consults.
My life has been traumatic.
To deal with it, my brain erased bits of the past 40+ years, so my long-term memory is an interesting mix of too clear and completely blank.
Therefore, I might very clearly remember a traumatic event which occurred decades ago, but utterly nothing about my high school graduation party a day later. Or, I might remember parts, but not all of a traumatic event, that memory speckled with black holes full of information impossible to retrieve, except for perhaps the hint of a smell or the brush of a touch.
So, when it comes to medical things, if some trauma occurs around the time of an appointment, I might remember the trauma but not the consult. Alternatively, illnesses/consults/hospitalisations/procedures can be very stressful, so my memories of those things might be crystal clear, but more likely polka dotted.
That’s how my traumatised brain works.
And that’s unfortunate, because as this specialist quotes a 13-year-old report, detailing symptoms and tests I supposedly had at the time, some of the content is news to me.
Despite having lived through it.
Which means I can’t answer half his questions.
Perceptive, he clues to that quickly, responding by speeding up his questions as though the onslaught will somehow shock my mind into clarity.
It doesn’t.
Instead, afraid of wasting his time, I throw random information from my life at him, jumping us back and forward across decades and diseases until confused, I can’t even list my current diagnoses, and can barely remember what symptoms I had yesterday, let alone in 2009.
My scrambled brain is a product of trauma, but I sound like a bumbling fool.
Nonetheless, whatever he thinks of me, he keeps the conversation moving along, gallantly forging ahead to possible diagnoses.
But, as he describes worst case scenarios in an upbeat tone (meant to reassure?), I want to tell him that I’ve experienced many worst-case scenarios in my life, so his statistical probabilities don’t impress me. I know worst-case does happen.
Nervous, one eye on this powerful stranger, silently I analyse his words:
What does ‘highly unlikely’ mean? Is he saying I could be dying, but he doesn’t think so? How accurate is his ‘think so’?
And, how sure is he that I won’t become trapped in a paralysed body, unable to communicate (a symbolic echo of my childhood)?
To my battered ‘inner child’, “highly unlikely” means little.
Flashed back to memories I would rather forget, as his scenarios get scarier my mind starts cutting up his sentences by blacking out little bits, a word or two here and there, so the remainder lacks context and meaning.
Thus, by the time I leave, I’m wondering if I’ll survive the night.
It’s lucky today’s consult doesn’t involve a consent form, because given the amount of information I’ve actually taken in, we can’t say that I’m ‘fully informed’.
Trauma has collided with his consult, but when I mention PTSD (to explain my distractedness), he asks if my mental health is ‘stable’, then inexplicably follows his question with a list of facts (alcoholism, suicide attempts, self-harm, eating disorder) from my history which make me look very unstable.
I flinch.
Ashamed, I’m aware of how very unlovable I must seem.
And, afraid that my symptoms will be ‘written’ off as mental illness, his psychiatric probing questions make me suspicious.
Does he believe that I’ve given up the wine? Or does he see a lying alcoholic?
Is he thinking I’m just a psych case? That the symptoms are all in my head?
Defensive, I withdraw eye contact, and don’t give it back for the rest of the consult.
Aware that once I’m out of here I may not see him for months, I know that it’s vital I concentrate. And I do want to, I really am trying, but always hyperalert, I’m easily distracted in unfamiliar environments. So, as he talks, my half listening mind darts between the (threatening?) noise in the corridor, frustration that I can’t answer his questions, panic that I’m not taking in all his information, traumatic memories, possible terminal illnesses, and the anticipated stress of the covid-ridden bus trip home, all while doing a risk assessment of his body language and calculating the distance to the door and whether I’d reach it first.
I’m exhausted.
And that shows as I drag myself, seemingly reluctantly, across to the examination table, whilst he bounds over like a rocket-powered hare. (A movement so sudden that, perceived as threatening by my brain, it will leave me with a flashback-like recall of his exam).
Please slow down.
He’s a lovely man, and knowledgeable, but I want to wind back his voice as it rattles off a list of treatments whilst, several steps behind, I’m yet to get my head around the list of tests. If only specialists were recorders that could be turned off, on, and sped back, at will.
Instead, tapping away on his computer, still talking, he’s blissfully unaware that the information he’s pouring into me is failing to soak in.
And I’m too intimidated to tell him that he’s now talking to a sieve.
Finally. Leaning back in his chair, wrapping up his summary of the side effects of the medication-from-hell, he chirps “so how does all that sound?”
Completely. Overwhelming.
He pauses, assessing my blank stare.
And that pause means he hears my whispered “I’m-still-trying-to-process-the-last-53-minutes-of-information”.
Kindly, he offers to jot down a recap of his main points. A dot-point print out which, given his list is five points long and my mental one is a scrambled 20, means I’ll leave with something coherent.
As he hands it to me, gratefully I add this printout to the 13 others already clutched in my hand, but neglect to pick up the test request form he’d skidded across the desk 5 minutes earlier.
Unfortunately, PTSD affects my short-term memory too, particularly when stressed.
As (reissuing me that test request form), he learns.
Hail specialists who…
understand the importance of the pause
give small chunks of information and check that I’m keeping pace
provide dot point summaries (diagnosis, treatment plan)
break treatment plans into simple ‘to do’ lists
prompt: “now do you have the test request form, the printout information, the 3 scripts, the summary and those 10 reports?”
hand them to me, don’t put them on the desk
watch body language
if I’m staring into space or look distracted, I’m overwhelmed, not bored. Slow down
until I get to know you, I’m unlikely to tell you I’m overwhelmed because that makes me vulnerable
understand that PTSD isn’t just another health condition in my list of conditions
it affects everything, including the ability to take in and remember information and follow instructions
even if I appear to be taking in information, my mind might be blacking out parts of the consult
I might remember only a patchy 40 minutes of a 60 minute conversation
try to understand me, not just my physical symptoms
understand that even if traumatic events aren’t mentioned, the conversation may rake up memories which upset, distract or make me defensive
clue that traumatised people are often worriers
explain carefully why ‘highly unlikely’ means ‘highly unlikely’
ask if there’s anything that you’ve said/not said, that is worrying me
have a sense of humour
stay calm
the more energetic you are, the more overwhelmed I’ll get and the less I may remember
send detailed reports to my GP
because she knows me and I trust her, I’ll take any worries and confusion to her, so she needs to know what you think
she can help fill in the gaps - any information my brain blacked out as you were talking to me