Monday 17 January 2011

Guest Post by Sue Davies - PTSD in Chronic illness/Disability

As regular readers will know, I just spent quite some time in hospital. An incredibly intelligent political commentator I knew had become a great supporter, both of my writing and through my health challenges.

At some particularly traumatic times, I wrote sentences that sparked a discussion on Post Traumatic Stress Disorder. I had been diagnosed the day before I went into hospital and the doctor had explained to me that my (dare I say rather Tory?....) “Pull yourself up by the bootstraps” attitude had probably made it worse. He described the memories of trauma related to a very long term condition as being like a box of old letters. You keep putting them in and closing the lid, but in the end, it's just too full and the lid keeps pinging open when you least expect it. Mentally, a kind of "You can run, but you can't hide."

Anyway, some of the things Sue Davies explained were like Eureka! moments for me. "I'm not going bonkers" "Oh, blimey, I do that" and "Yes, yes, that's exactly what happens" bonding took place, and with great generosity, Sue agreed to write the following post, explaining why she believes PTSD is probably very common (yet largely unrecognised) in those with long term illness or disability. 

I hope it helps some of you as it helped me. 

"Sue M. is a very unusual person - not just for all the obvious reasons – she has been diagnosed with post-traumatic stress disorder (PTSD) as a direct result of being traumatized by her illness.  I know from my work, that PTSD is common amongst those with long-term illness or disability but few have been diagnosed by the medical profession.

Clearly there is a tangible risk of developing PTSD for these groups.  Many sufferers will have usefully learnt to ‘dissociate’ from their physical pain/difficulties and this predisposes them to developing full blown PTSD symptoms.  Furthermore, many sufferers will have been faced with intense fear, helplessness, a threat to physical integrity and/or mortal consequences… all diagnostic criteria for PTSD.

However, the consequence of non-diagnosis is that sufferers are usually bewildered by what is happening to them, and therefore, do not know how to help themselves when they find themselves in the panic. The short answer is that the sufferer has learnt to separate thinking and feeling, and experiences either an unreal numbing or a panic in response to stimuli associated with the trauma … and this response is absolutely normal.  It is the trauma which is all wrong!

Sue’s posting ‘There’s no such word as can’t.’ gives a vivid account of many typical features of a PTSD panic attack. 
‘Seemingly randomly, an image of some dreadful living nightmare would pop into my mind unbidden, and I'd struggle to breathe. My hands would go clammy, my heart would race and I'd feel a scream welling up in my lungs, thumping against my chest to be let out. I could be cooking the dinner or waiting for a bus and suddenly, a sound or a smell would trigger a memory and I'd feel like I was there again, back in that particular moment of terror.’

 In the panic attack phase, thinking is almost totally excluded and the emotions are overwhelming  - ‘I sit like an imbecile, rocking, unable to explain why I was behaving so oddly’.  In stark contrast, there is a cutting out/reducing of physical discomfort during the ‘numbing’ phase and a sense of almost unreal calm, simply observing the sensations …. as is horrifyingly demonstrated by Sue’s quote from “I just nearly died.”  
‘I watch myself, with cool detachment rush along the hall. I stop gagging, I stop choking. I feel calm and just march. The lift is not there and I see her push the button to summon it down. I am dying and she is making we wait for a lift. Somewhere deep, deep inside me, I think I even find that funny.’ 

This ‘separation’ of thinking and feeling involves that part of the brain, the amygdala, which orchestrates the flight/fight/freeze response. The amygdala compares and contrasts, such that any ‘sloppy’ match with a stimulus from a previous trauma acts like a hypnotic trigger.

The reaction to such a trigger takes only 13 milliseconds. In contrast, it takes 300 milliseconds for the information to become conscious. In that 287 millisecond time-lag, neurotransmitters flood the frontal cortex to ensure that you remain totally focused on the perceived threat, your BP changes, blood floods from the internal organs to the muscles and your breathing rate, heart rate and gut become desynchronized. These changes produce the physical experiences of panic and, unless one is able utilize these changes by discharging them in ‘getting away' from the stimulus (fight or flight) one becomes ‘locked’ (freeze) feeling the panic which then becomes self-reinforcing in a positive feedback loop.

Unfortunately this is where our biology and the modern world do not match up. The thinking/observing phase is clearly of evolutionary advantage in getting away from predators or danger. There are stories of people holding up 3 ton lorries to rescue another or soldiers carrying on, not knowing that they've been seriously hurt.... this part of dissociation is the ‘numbing’ bit that facilitates fight and flight. 

The panic phase is associated with 'freezing' which occurs when an animal cannot ‘fight or flee’ to a safe place. In addition to more obviously traumatizing events, sufferers of many illnesses cannot get away from pain (until/unless they can get pain relief) and this is equivalent to being unable to get to a ‘safe place’. They may also feel trapped by being unable to avoid necessary treatments, or by the limitations of their physical/emotional disability.  It is also often difficult for a sufferer to express anger to their carers (such as nurses) because they are nervous that they might be 'abandoned'…. and it is a pretty frightening thought that you will have to do whatever ‘they’ want because you are ‘trapped’ by being vulnerable and dependent on them! 

The amygdala is different from our other brain processing pathways in that it takes the raw data straight from the first pooling station, the thalamus. Hence it has the much faster response time than the conscious brain.  This is fantastic in terms of responding to danger but means that there is no comprehensible 'train of thought'. Sufferers are often unaware of their triggers, and their ‘panic’ reaction appears, as Sue says ‘Seemingly randomly’.  Trauma memories are not the same as ordinary ones - the perception is that ‘they just come’.  However, they are not ‘random’ memories but evoked by the trigger which has not been noticed as a conscious experience because of the rapid reaction of the amygdala.  In other words, the vivid flashbacks are also mediated by the amygdala  - not the ordinary memory system - and can be experienced as having a different quality from other memories, or as if they are actually happening in the ‘here and now’.   

So the first steps in deconditioning the PTSD response is to identify and understand what triggers and situations are likely to induce the panic/numbing response in you. As Sue says these triggers may be smells, noises, sights, situations or almost anything else which is associated with your personal trauma(s).  I think the most important thing is to take your panicky feelings seriously... no-one ever feels anything for no reason.  You are not crazy/making a fuss/being unreasonable etc. Your reaction is just the normal hard-wiring of your brain, which in pre-history was the difference between the human race surviving or not. ‘Knowing’ and 'Parenting' yourself is the way forward.

Many PTSD sufferers instinct is to persistently avoid triggers, to ignore their body's warning signals or anniversaries, to avoid talking about the trauma or confronting anything associated with it - but perversely this avoidance tends to re-inforce the reaction partly because the sufferer gets taken unawares. Any of the sufferer’s triggers can stimulate the automatic response.  De-conditioning the response requires knowingly re-experiencing the hypnotic triggers at a much less toxic level, and to attach the new understanding to the memories which the conscious brain drags up to explain our reaction.  It is important to stay on the ‘affective edge’ which means keeping your thinking and feeling together whilst being in contact with a trigger.

A good way to reduce the impact of a hypnotic trigger is to 'change' it as much as you can. For example, if it is a particular smell such as the ward.  Put some Lavender oil or cloves in a handkerchief to alter the smell.  Get as ‘grounded’ as possible…. talk yourself through the expected procedure prior to exposing yourself to a trigger and think about how you want to deal with each aspect.  Find a grounding object – your watch, a button, a photo– take it with you and touch it whenever you feel the panickyness, to remind you that you are quite safe now, that you are reacting to the past and that this time is different.

Grade how you are feeling each step of the way – 0 being no worries, 10 being the worst – because this is a conditioned reflex you cannot just eradicate the reaction by understanding alone.  You de-condition it by experiencing it in a controlled safe way.  Anything below a 5 will tend to reduce, and eventually eradicate, your future reaction, but give yourself permission to stop immediately if you experience more than a 5.  Keep reminding yourself that your amygdala is just doing its best to keep you safe but in this instance, it is an inappropriate  response because you are secure. 

Lastly, you are much less likely to have a PTSD panic if you are as well as possible, happy and pain-free.  So make it a rule, wherever possible, to get enough sleep, food and keep yourself  hydrated.  Ideally, create structure, stimulation and recognition for yourself and from others … not always easy I know.   I would also tell an empathetic friend/relative/member of staff what you’re experiencing and de-brief… unfortunately most people tend to be uninformed about PTSD  so you’ll be doing them a favour by explaining, and they may have some helpful ideas.

Finally there is loads of information in self help books, online and from therapists of all sorts… but I hope that just knowing that you are not weird, over-reacting or crazy, helps too!"

Guest Post, Written by Sue Davies
**Do please share with anyone you know who's been ill for a long time and feel free to share link with Sickness or Disability support Groups who might find it useful.


  1. This is one of the best pieces I have ever read on PTSD. I would add that if you are diagnosed with PTSD in chronic illness, you should not be embarrassed to tell consultants, nurses, doctors etc.

    They are so used to dealing with medical emergencies and problems from their practical end on a ward that they just don't think about how traumatising it is to experience those things for you. Hopefully none of them will give you the bootstraps talk, but simply stop and think again from a patient's point of view.

    I have more or less recovered from PTSD after intensive NHS therapy and it was very similar to the steps that you recommend. Best of luck to anyone who suffers from this hideous condition!

  2. I knew I had ptsd. I didn't understand what I was going through the first time after being raped when i was 18 and pretending nothing had happened to even myself but I knew I had it after the 2nd rape at 31 and again after the nearly dying stuff and the acne...I've used so much of the knowledge shared here on myself...the stress of being declared fit for work brought all the symptoms back up badly. Learning about human behaviour, the physiology and the psychology aspects have helped me understand myself so deeply, it is so annoying to be belittled and discounted when I have been doing everything to the best of my ability to work on these issues unsupported by any official means. I was just thinking of how the report discounts my anxiety problems as i don't use medication for it, medication doesn't fix the triggers, indeed it can mask it. I am not a fan of meds they cause needs for more meds and more physical problems for me. I understand why they are okay for some but it is not good we have to fight for our right to have appropriate treatment....sorry another of my little soapboxes...excellent article...thank you :o) x

  3. Isn't it? I'm so glad she sent it to me!!

  4. Great post - thanks for posting it.

    PTSD can affect carers as well as people with long term conditions. Carers are often likely to keep putting the lid on, as you describe.

  5. Interestingly sounds exactly like my girlfriend when she was suffering from repeated, extreme panic attacks. That wasn't caused by PTSD as far as I can tell, but the symptoms, extreme, seemingly random panic attacks and what we did to try to help her sound almost identical.

  6. I presume that the flight into alcohol and other substances by ex-soldiers is an attempt to insulate them from the flashbacks.

    If I am wrong please correct me Sue (that's Sue D of course).
    Regards, Howard

  7. gherkingirl ... Thank you for confirming that PTSD can be treated... and I know how much courage it takes to risk coming into contact with those triggers ... be very proud.

    Peace artistLainey.... just as the system discounted your 'anxiety', I don't want you to discount your post as a 'soapbox' rant. You have had to stay very sane and brave to deal with your PTSD ... its the system and the rapes that you should never, ever have had to experience! I wish that they had not.

    km - You are absolutely right. Carers are very vulnerable to developing PTSD too and I nearly added them to the list... as a carer myself, I know that our trauma is even more likely to be missed or misunderstood by the professionals.

    Stephen Wigmore - I think that calling some reactions PTSD and others not, is all a bit unreal.... Our brains not only react to trauma in the manner I describe, but they also construct our understanding of the world. So what is traumatic for one individual may not seem so to another. The amygdala has never read the DSM or psychiatric check lists, so if your girlfriend has the symptoms, her amygydala will be firing and calling it PTSD or something else isn't going to be significant.

    Howard - You are absolutely correct ... and the statistics for substance abuse and prison sentences amongst ex-soldiers is highly concerning in specifically this respect. I believe that PTSD following active service is going to be much higher than is currently acknowledged.

    Thanks all for the feedback!

  8. Syzygy,

    Hoqard raises a good point... is Alcohol an estabished method of people trying to cope with the disorder?

  9. Yay, ~Syzygy Sue!! Glad you've seen it now and the comments. Thanks again.
    (And see, I didn't change a thing, it was perfect)

  10. Sue

    I love your easy intro... and thanks for the positive feedback.

    Syzygy x

  11. Eoin

    Yes.. alcohol, acting out, drugs even anorexia are all strategies that people use to avoid the triggers, flashbacks or of 'knowing' what has happened to them.

    I think it is possible that there may be a genetic predisposition in alcohol abuse etc. but in my experience, psychological histories are much more plausible explanations.... and addressing those issues also provides alternative healthy solutions.

  12. Sue Davies

    To my knowledge I have never met anyone suffering from PTSD but then I have only thought of it in military terms.

    I am most grateful for your thoughtful and sensitive article as the more people who have a handle of some kind on this awful illness the more likely the sufferers are to be supported.

  13. Apologies for leaving this question out of my original post.

    Is PTSD associated with those who live on after severe strokes?

  14. Thanks for posting this Sue. I've known I had PTSD for some years now, for me it's all to do with the trauma of being accused repeatedly of lying/attention seeking before I was diagnosed with EDS. It's reassuring to know that it's real, and not just another example of me being weak and needing to try harder as I was always told before I was diagnosed. BG Xx

  15. Malcolm

    Any brush with the possibility of dying is going to be an event that can leave someone with PTSD ... several severe strokes clearly more than fit the bill but strokes are not any more likely than another type of traumatic event to evoke PTSD.

    As I described above, PTSD is just part of an ancient response system to danger. For example, if you met a sabre toothed tiger next to a waterfall. It might very well be a good idea to avoid waterfalls even though they are not dangerous in themselves because your experience shows that there might be a sabre toothed tiger. Equally if you are forced to sit next to a waterfall, it would be understandable that you might feel very panicked because you wouldn't be able to get away.

    Now imagine forgetting/not knowing that it is the experience of the sabre tooth tiger that underlies your response and that you don't know that the waterfall is reminding you of the tiger. So you don't know that it is just the seeing of the waterfall that is causing you to be so panicked... its easy to see why anyone would feel more and more frightened... and confabulate that they must be crazy! Essentially that is the situation for someone who has PTSD.

  16. BG

    I am most familiar with sufferers of ME/CFS and I would judge that overwhelmingly they have suffered as you have from being discounted/ not believed .. and many, like you, have developed PTSD.

    I know that my daughter just wept and wept when it was shown that she had mitochondrial dysfunction ... a result that no-one could doubt.

    I am so angry at those members of the medical profession who have the arrogance and ignorance to dismiss patient's reports of symptoms as psychological when they have no expertise in mental health ... or seemingly even common sense!

  17. Syzygy Sue - Your answers are astoundingly clear. You make it all so easy to understand. Thanks for this thread, you my be busy for some time.