In 1993 I read an out of print book called “Gödel, Escher, Bach: An Eternal Golden Braid” a 1979 book by Douglas Hofstadter. It had been recommended by a lecturer on a short computing course I had attended before embarking on a full-time degree in Computing at the grand age of 37. On the surface the book appears to link together Mathematics, Art and Music and through symbolic notation to computing.  But it became much more than that when I realised I was bring introduced to how all things have a relationship in our brains. Hofstadter states that it’s about “how cognition emerges from hidden neurological mechanisms”. 

 Starting this blog today it dawned on me how relevant, the themes in that book are to my current learning and healing from the trauma I’ve been through and its link to the physical and psychological manifestations that make me who I am today. Why has this come back to me? Well because I’ve once more just been through another medical problem of the discovery, diagnosis, treatment, cure variety and come out the other side, a little less traumatised but nonetheless shaken as always.

I first met my therapist because of a diagnosis of Multiple Sclerosis (MS), I was really struggling with being diagnosed with an autoimmune disorder which often required drug treatment and visiting lots of medics. I knew I was terrified of anything to do with doctors, hospitals, medical procedures and even illness. They sent me into a blind panic which was out of proportion to the issue I was facing. Not helped by some very severe reactions to drugs over the years, I mean the “sorry but your liver is swollen as this drug doesn’t suit you” reaction and being rushed to hospital with suppressed breathing and heart rate reaction. Plus MS is a horrid illness which mimics other illnesses and my trip around various consultants over nearly 13 years searching for answers didn’t help either.

But that therapist was the one who eventually went on to become a close friend and my saving grace when she diagnosed CPTSD. When it came to bad medical experiences I’d also watched my baby son many years before react on numerous occasions to ‘harmless’ antibiotics with childhood infections and nearly die when a childhood immunisation went wrong. Plus, I had a still born baby at 16 years old after 3 days of being told by doctors I made too much fuss and it can’t hurt that much! But this particular therapist still refused to ‘treat’ me for what I believed was a phobia in regard to medics and instead helped me understand that much of what I was feeling was real fear because of past, sometimes dangerous, events.

 It all started as soon as I was born, I was the scapegoat and the eldest of 5 children to a narcissistic mother. Dad’s stomach ulcer, her breast cancer, my own childhood illnesses, even my siblings’ illnesses and accidents were all my fault.  Now each time I am presented with a new medical issue, and of course there are many as I age, my reaction is often that of a terrified little girl as I’m triggered once more to feel that dreadful, full blown, my life depends on this fear that accompanies the flight or fight adrenaline rush. Plus I feel the guilt of the little girl who always thought illness was her fault!

I am now many years down the road, the wrong side of 60, carrying a very large back pack of trauma and trauma related illnesses. I was always going to end up with problems as my ACE score is 6 (see  “Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal” by Donna Jackson Nakazawa and  https://www.cdc.gov/violenceprevention/acestudy/index.html).

As I’ve worked with my therapist over recent years to get on top of this it’s become a little easier, but my body doesn’t know that! I’ve learnt to gain as much knowledge as I can about my condition /illness. I’ve learnt what drugs my body can/can’t assimilate correctly and to discuss this in particular conversations with medics. But my body doesn’t know I’m trying to keep me safe. The moment I’m faced with a hospital visit or anything medical my blood pressure (BP) is through the roof and my heart rate off the scale. My palms sweat, my hands shake, my mouth is so dry I struggle to speak, I catastrophise everything, I’m always close to tears and, in short, a wreck. I have a PhD now, so I know how to research these things but still that doesn’t calm my body which has obviously “kept the score” of the trauma.

I’ve never really talked face to face about my trauma to anyone except my husband and my therapist. But I recently had to go to hospital for an operation, not a major one, but still traumatic for me. So I decided to be totally open for the first time, after all the shame will never diminish if my trauma remains my shameful secret. Plus we need to educate professionals about this issue. The pre-op appointment was going dreadfully as I tried to explain my CPTSD to a Health Assistant who kept saying they wouldn’t operate unless my BP came down. She just muttered something to herself and I caught the last word ‘tachycardia’ and I knew my ECG was also dreadful.  In spite of me taking my own BP readings with me she wasn’t impressed. But then I was taken in to see this lovely nurse.  The moment I mentioned CPTSD she stood up and shook my hand explaining her own diagnosis and even briefly telling me her story. She accepted my BP readings and placed my files in an order that meant they would know my drug allergies and my likely psychological frame of mind when it came to the day.

So how did the day go, well okay! Yes finding the nerve to finally tell them meant I was really well looked after and treated with kid gloves. Did my usual reactions go away? No, my BP was still very high, I was still frightened and opted for the general anaesthetic instead of local as I knew I’d probably have a heart attack if my heart beat any faster! But I did it and I educated people and I’m still here to tell the tale.

I’ve no doubt that next time I’m ill or need any medical assistance I will be sent into a panic again. But drawing together the dots that link all these elements has helped me know I’m not mad. My reactions both physical and psychological are normal reactions to an abnormal past which has left its imprint on my very DNA. Why should I be ashamed of how scared that little girl was (is)?

Note: You can read more about Sweet Sixty here. She gave herself the OOTS forum name Sweet Sixty because her sweet 16th birthday was anything but, another poignant example of the legacy of childhood trauma.