My story of “THANATOPHOBIA) or “Death Anxiety”

By Billy

Here is my story (about a particular Mental Health Condition known as “THANATOPHOBIA) or “Death Anxiety” which often, as in my case, goes hand in hand with depression, GAD and OCD. This “bundle” of conditions add up to a substantial package of mental health issues! 

Without help from Mental Health Services, over the years, but particularly during the Corona Virus pandemic (which triggered every appalling fear I have); I would have sunk – gone under. I don’t know what would have happened to me but it would have been much worse without essential help. Mental Health services and charities are invaluable. They ARE an emergency service. They DO save lives. On a day to day basis, they offer support & improve lives; as they have for me…many times

I am 49 years old, live in Harrogate, North Yorkshire, UK in the rural countryside of the Yorkshire Dales.

I work as a Biochemist in a Veterinary Medicines Laboratory & I am married with two adult children – both girls, and 3 grandsons.

My third child (the middle one) was a son, called Alex (Alexander). He drowned in a tragic canoe accident in 2008, when he was 19 years old.

I have suffered from Death Anxiety (Thanatophobia) with varying degrees of severity, all of my life; as long as I can remember. It has always been there.

Sometimes it hits me like a freight train, causing panic; awful heart-pounding panic, deep anxiety and depression. 

Sometimes it creeps up when I am already in a depression, like a needy friend – adding to my load.

But it is always, ALWAYS there; at the back, middle, and front of my mind. It chips away at the good, feeds off the bad, and colours everything in between.

Death anxiety makes me so angry. It saps the life, pours water on the fire of fulfilment. It chips & chisels away at the fun and the enjoyment. It is like the morbid friend at a party or on holiday; making you uneasy and stealing the joy.

The fear & overwhelming anxiety is not about the actual “act of dying”; the illness, the pain. It is about the “ceasing to exist”, the “I will never again touch, feel, laugh, cry, eat, drink, love, hate, smell, walk, watch TV, eat crappy food…” on and on and on.

It is the utter pointlessness of it all, and the inability to comprehend a world without me in it, and me without a world; ie; no more me.

It is hard. It is gut-wrenching. It is scary; so very scary.

A therapist I once saw likened it to self-harming; and that is exactly what it is for me. A form of psychological self-harm that I inflict whenever something good is happening. When I am happy. When I feel love, and loved. When I am cosy & safe. When I am excited. When I start to enjoy my life – THAT is when I bring it. Like a form of self-flagellation; a mechanism for stopping myself from enjoying life. Reminding me not to get my hopes up, because – guess what? We die!

That, is an evil friend to have.

The irony, and it is a tragic irony, is that it is taking up so much of my time that it is greedily gobbling up the time I do have.

In November 2018 through March 2019 I became so poorly; so frightened – so “beaten” by Thanatophobia that I had given up. My brain felt fried, and it felt like my heart was only beating to give me enough strength to panic…and sweat with stress.

Ironically my fear of dying was killing me. 

Something had to give, and for a while that something was my sanity. 

I was off work for months and even ended up in a hospital for several weeks of December 2018. Sertraline (the first ‘port of call’ drug of choice by GP’s) did not work for me (but it may do for you, as we are all different). I am now on Venlafaxine, Promethazine & Propranolol (amongst a cocktail of other drugs) which helps somewhat; although nothing can take away the fear – and the 100’s of “pangs” I feel every day. 

I was under the care of the Mental Health Team for over 8 month’s in total. I had Crisis Team involvement, Counselling, Psychotherapy, ACT therapy, and CBT. 

It was me – the patient – who ended up telling my community psychiatric nurse (and then just about every other professional along the way) WHAT Thanatophobia was, HOW it DIFFERED from “death avoidance”, Hypochondriasis, fear of funerals, sickness etc. Heck, I was even the first to inform them that it has a name…Thanatophobia.

In my experience, to coin a phrase – it did not seem like “the right hand knew what the left hand was doing”

Initially; after being in the A&E department of the hospital all day & into the night; I was sent to a Psychiatric Hospital over 75 miles away from home – in Durham, as there was no room anywhere else. The planned “dedicated psychiatric hospital” for my area – Harrogate, had been scrapped. They were already well into proceeding to gradually close down the psychiatric ward at Harrogate District Hospital. 

When I got to Durham I remember being laid in the back of the ambulance & hearing the urgent discussions between the paramedics, as, it transpired that Durham had no idea I was coming & had no space. So I was left in the back of the ambulance whilst it was sorted out. 

If asked about my treatment by the NHS during this time I would say my biggest memories were of a drastically underfunded “business”, mis-managed and ensconced in ridiculous bureaucracy. There was neither time nor manpower to effectively communicate between the various care teams. This, inevitably, led to resentment, stress and autocratic complacency; which was palpable to the service user.

Finally, in desperation I found and paid privately for, an Hypnotherapist. She was lovely & I saw her regularly up until the covid-19 lockdown. It helped; not totally (nothing does / can) but I always felt more relaxed, calm – even a little elated for a few days after each appointment. 

It calmed my heart and gave my head some time to clear. 

Of course, it is always there; ready to intrude into my life, like an unwanted guest at a party. During the lockdown, I haven’t been able to see the hypnotherapist and it has been hard – really hard. I’ve been listening on YouTube & tried some apps for meditation, but it is just not the same. 

I find that the Death Anxiety / Thanatophobia is like a little demon sat on my shoulder. Ready to suck the enjoyment from my life. To bring me down when I do feel happy. To remind me not to enjoy life as it is all for nothing and one day I’ll disappear forever. 

It is a form of self-harm, kind of like “self-flagellation” to keep a check on my happiness. To remind me that there is “really no point”! That said; it also feels like I am two different people (mercifully not in a schizophrenic kind of way; which must be awful) but in that there is the Billy without the Death Anxiety (and I think I remember him) who enjoys life, tells the jokes, makes a fool of himself & acts the clown. 

Then there is the Billy at home alone. Or in bed at night. Or driving. Or quietly reading / watching TV. The Billy when the devil on his shoulder is winning the battle & dripping the poison into his head; sucking the joy from him.

The hypnotherapist I saw said the level of distress & damage it can do, is akin to PTSD, as our cortisol hormone levels are constantly sky high – on “fight or flight” mode. 

I understand what she ; though we cannot fly away, nor can we fight it. 

So; we are destined to lose the war; but I guess it is learning to win some of the battles along the way – and savour every victory…however small. 

That is what my head tells me…my heart – well, that’s a whole other story…

The covid19 pandemic ramped up my anxiety to almost unbearable levels, as it did with many thousands of others; many of whom may not have suffered from Mental Health problems previously; many who did.

If you would like to find out more about Death Anxiety / Thanatophobia you can do here:

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