My Needle-Phobic Past - 2nd August 2012

When someone comes near me with a needle, I just cannot cope emotionally. My normal intelligent, rational, logical, sensible self evaporates into a fog of uncontrollable sobbing, and I feel myself being dragged back to the distant and not so distant past, vividly reliving awful previous experiences.

As far as needles, etc, are concerned, I have plenty of awful previous experiences to choose from, and it’s like a door opens wide in my brain and I just fall back into the past, as if these terrible things are happening right now,  in full technicolour and stereo sound, with my mind just choosing at random any one of a number of traumatic experiences to live through again as if for the first time.  

When I was eight, I was in hospital for a very long time. I had encephalitis, but it was misdiagnosed for the first 3 weeks, and I was getting progressively worse. Hospital was a very frightening place, and visiting hours were very restrictive, and only parents could visit. My mother, bless, her, never missed a day, which took an hour and a half each way on 3 buses, leaving my baby sister and big brother with whoever could have them, normally my grandmother.  In those days, back in the sixties, hospitals wouldn’t let you wear your own clothes, and everything I was given to wear was ugly, old-fashioned and smelt funny. They even threw out my own pink toothbrush and gave me a regulation green one – I hated the colour green at the time. If anyone sent in sweets or biscuits they were confiscated, put into a big communal tin, and after lunch every day, if they felt you had been good, they would let you have just one. They never felt I’d been good so I would be shown all the lovely sweets in the tin and then it would be taken away before I could have one and the staff just laughed.  I simply don’t remember any small act of kindness towards me from the staff at all, only cruelty, intimidation, bullying and fear.

Encephalitis is the inflammation of the brain, and two of the symptoms are behavioural changes and delusions, and I had both, which probably made me dislikeable at the time, and I remember often being called a “little brat” by the staff. I wasn’t a little brat normally, but I was extremely ill, and very frightened, with a brain disease that was affecting my personality.  I also wasn’t stupid, and I knew that whenever I had cut my knee my mother had done all she could to stop the bleeding, and make me better. I knew that blood should stay inside your body, and it was very bad if it came out. I also knew that blood was inside veins, which led back and forth to your heart, and that nature had made it so that just enough blood was in there so your veins couldn’t burst.

I was so ill and my white cell count was going through the roof, so I had to have blood tests several times a day. No one explained why, no one tried to comfort me. I couldn’t understand why they wanted to steal my blood and hurt me so much in the process. I now know that I have very difficult veins. They are buried deep, collapse easily, and are very narrow, so it’s particularly hard to get blood from me. Every time it would take them several attempts, and sometimes they would just leave the needle in my arm and sweep it around inside hoping to pierce a vein. Agonising simply doesn’t come near describing the pain.

I shouted, screamed, yelled and sobbed, and did everything I could to protect myself.  I was simply outraged, and thought they were trying to kill me by taking all my blood away. Their response? To hit me hard and repeatedly, or to put their hands over my mouth to silence my screams, or worst of all, to get several nurses and young medical students to hold me down and pin me in place. This was happening four or five times a day. They were actually enjoying themselves, it became a bit of a sport to wind me up and make me worse. As they laid across me, they would laugh and mock me. The things they told me have stayed with me ever since, and even though I know it’s irrational, when I’m in that needle panic moment, I still actually believe them.  If I don’t stay still, my whole blood system will burst and I will die a slow and painful death. If I don’t behave, they will put poison in my veins. Some of the other things I can’t even bring myself to write down.  Some days even my teddies and dolls would be taken away because I had been so “naughty”.

It was made absolutely crystal clear that I must never tell anyone what was happening because they had the power to make things a thousand times worse, I was too scared to ever tell my mother.  I now realise she would have been furious, and would have moved heaven and earth to bring these people to some sort of justice and to have protected me had she known – she was as protective as a tiger when it came to her kids.  My mother was a nurse, and had trained at the very same hospital. I had a strong sense that she had once been part of this organisation, and must have known how horrible it was.  How could she leave me in such a terrible place if she really loved me? I would scream this over and over again when she had to leave at the end of visiting. It must have broken her heart.  My Dad came as often as he could, but working in London meant that getting there before 6pm when visiting time finished was impossible most days.  He too, was a total star, and he promised to buy me a present for every time they had to stick a needle in me.  We lost count at around 300, but he kept his word and I probably cost him a fortune.

Eventually I was diagnosed properly, but almost too late, and thankfully I was transferred immediately to a specialist neurological hospital much closer to home. The staff there were kindness personified, visiting hours were whenever anyone could make it, and my brother and sister were allowed to visit too. I could choose what to wear, either my own clothes or some of the most beautiful dresses I had ever seen that they kept specially for their “little princesses”.  They cooked my favourite food to tempt me back into eating, I had to keep my fluids up, drinking a glass of something every two hours day and night, and everything tasted funny and I couldn’t drink. So they introduced me to all sorts of exotic drinks, and I discovered pineapple juice, which I came to love. So they ordered crates of the stuff directly from Schweppes, and the nurses would wheel me out to watch the delivery van bring it all in to the ward kitchen. Needles were still an ordeal, but I would be cuddled and hugged and sung to and given treats afterwards, and it was explained why they needed to do it. I loved that place, and still have very fond memories of it.

Fast forward 25 years, and I gave birth to Toby, who is the only person in the world with his very own, unique medical condition. He is multiply disabled, and was so desperately ill for his first five years that we spent most of our time in hospital. It wasn’t a case of “if” he might die, we spent every day knowing that it might be his last. His prognosis was so poor that he was simply not going to make it.  A few months ago, we celebrated his eighteenth birthday, against all the odds he has survived into adulthood. Still with the mentality of a two year old, he has very limited communication, he is doubly incontinent and still in nappies, he is mostly gastrostomy fed and and over the past few years has developed challenging behaviour. But mostly he loves life and he can be delightfully funny and engaging, with a hilarious sense of slapstick humour, and can charm the pants off strangers by flamboyantly blowing kisses to everyone he takes a liking to.

Those first five years were so hard. He had 38 separate hospital admissions, and during each one we prepared to say goodbye on at least one occasion. Each admission would stretch for week after week, and sometimes month after month - our longest admission was for 8 months in a London teaching hospital.

Unfortunately, the vast majority of his hospital admissions were to that very same hospital of my nightmares. He has also had the misfortune to inherit my terrible veins. Getting blood from him was a dreadful thing to watch, but by the time he was born at least mothers were expected to stay with their children so I was always there to hold and comfort him. Getting lines in was really difficult, and if you look at the insides of his elbows, his neck, his ankles and behind his knees, you can still make out the scars of those hideous times.

Watching someone hurt your own baby is simply awful. Even though the adult in me knew why they had to do it, and that it was to help him, as I held him close each time I just felt the blind terror of my childhood, and looking into his eyes I could see he felt it too, but coupled with something much worse, a look of total bewilderment at my betrayal, because now I was the one who was pinning him down and holding him still. Every time they had to find vein access I sobbed my heart out for him, for hour after hour, and whenever he was on a drip I was just heartbroken for him.

When he was six weeks old and in intensive care, they had spent over an hour looking for a vein that would work. He was so ill, but conscious and in such distress. They finally found one in his ankle. The following day, he was in agitated beyond belief, and giving out all the signals of extreme pain. He was banging his ankle against the cot side again and again. I asked them if the drip was hurting him, they said no. I begged them to check, but they refused, saying that to check might mean that the canula became compromised, and that they didn’t want to lose the only vein access they had found. Even now, 18 years later, I still beat myself up that I wasn’t more insistent, but at the time I simply didn’t know how horribly wrong things actually could go with a drip. They kept saying that this was a good sign, that he must be feeling better if he was able to protest at the bandage on his foot and stupidly, I believed them. As I am typing this, I am crying my eyes out, and I will never forgive myself for not protecting him better.

After several hours of distressing awfulness, they finally agreed to take a look, but insisted that I leave the room. It was nearly 4 hours before I was told what was happening, and even then they lied to me. They told me something had gone wrong and he had had an allergic reaction to the dressing on his ankle. By the time I saw him again, the foot was bandaged, and the drip was now in his scalp, his head had been shaved, and a plaster of paris cap had been cemented on to keep it in place. It was a couple of days later when I was finally told the truth. The vein had collapsed, and as a result the canula had dislodged into tissue. He had received a very severe chemical burn, and the bone was visible. He was already so ill and his resources so compromised that it took nearly a year for the wound to begin to heal, and along the way it got infected countless times. When people see the scar for the first time today they are often visibly shaken, it measures over 2 square inches and I’m sure many of his carers must think that I was in some way a neglectful and terrible mother, not realising that it was caused by a neglectful and terrible hospital incident.

There were several other awful moments with Toby and vein access, one of the ones I relive during my dark times is when he was 3 years old in intensive care in the London teaching hospital, attached to leads and lines galore, and he was in a very bad way indeed. He was unconscious, and not expected to survive for more than a few hours. I asked if I could hold him. It takes quite a few minutes to organise a cuddle under those circumstances, and several members of staff to help it happen, but eventually he was placed gently on my lap for what I thought would be our last cuddle. After a few minutes I began to feel wet, and asked a nurse to check. The button was pushed, the crash team came running, and he was abruptly taken from me before I realised that we were both saturated in his blood. The arterial line in his neck had come adrift. I was horror-struck, and just fled out of the room in a terrible state. It was hours before I could bring myself to return to him, because I thought I had actually killed him by wanting that one last cuddle.

At the time, I wanted to to be there for him every time they had to open a vein, but in hindsight I now wonder whether that was the right thing to do. Now he is taller than I am, with very little comprehension, and a capacity for aggressive meltdowns when he is on overload. Normally, when he gets upset, he will seek me out and attack me. I now wonder how much of this is because he doesn’t understand why I ever let all those people hurt him so much.

Those people who held me down and laughed at my terror were about 10 – 15 years older than me, and are now nearing retirement age. How many of them now hold senior, influential positions of power within the NHS? It terrifies me to think that some of them may have been the same people that treated Toby too, and I would never have recognised them or remembered their names.  

I thought all these awful times were behind us now, until I was diagnosed with cancer a couple of months ago. Occasionally in the intervening years I have had the odd blood test, and although panic-ridden and tormented by some of the ghosts of the past, generally I have held it all fairly together at the time. Unfortunately I can’t anymore.

I can handle the cancer diagnosis. I can handle staying positive and upbeat, but I simply can’t handle the needles. Some dark door in my brain has reopened, and every time they need some blood or to give me an intravenous injection or run some drugs through my veins I completely go to pieces, and I’m back there, reliving terrible moments as if they are happening all over again. Rationally I understand, and I actually actively want them to do everything they can to get rid of the cancer and to get me well again, but I just can’t let them near me without sobbing and wailing like a baby. I’m that 8 year old little girl again, or that frightened young mother. I feel out of control and I can hear this terrible moaning sound like a wounded animal about to die in a ditch and I realise with horror that I’m the one making that noise.

No one has ever answered my questions because I’ve been too scared to ask. Can your veins actually burst and kill you? How can your veins cope with an additional volume of liquid without bursting? What really happens if a bubble accidentally gets into your bloodstream? Does that every actually happen? What if your heart explodes? What if it is poison and not healing potions? Worst of all, how can they be sure that all your blood won’t just fall out of that hole they have just made in your vein?

My circulatory system is very personal, as if it is the actual “me” they are invading, my very soul.  There is something almost sacred about it,  and it’s attached to my heart, and if you bleed you’re in trouble, as I learnt as a very little girl, and I just can’t see a way of getting through these terrifying thoughts and actually letting them cure my cancer.

Interestingly, when I looked up “needle phobia” on google, very little comes up, and anything that is there is written by those who have never shared these terrors and simply don’t understand, but who think they do.  It’s a dark and shameful secret to have to admit as an adult that you are a big, fat, baby coward at heart, and health professionals, no matter how kind and empathetic and caring simply are at a loss to imagine why people like me behave as we do. People with deeply embedded needle fears would never choose to enter the medical profession, so none of the people paid to remove your blood will have any idea of what we are going through. Yet needle phobia is one of the most common fears of all, but most people are far to ashamed to openly admit to it.

Yesterday I came out of hospital after a mastectomy. The past few days have been horrific, not because of the operation, which I was totally fine about, not because of the post-operative pain which I coped with remarkably well, and even when they removed one of the drains, I hardly flinched. I am at home with another thick plastic drainage tube piercing through my flesh for several inches – that doesn’t phase me in the least.  It was the canula in my hand which caused my torment and the intravenous antibiotics they had to inject into it for 40 minutes or so three times a day. I sobbed and wailed and went to the very dark places of my past in my mind and I just couldn’t deal with it at all. Every time I glanced at my hand I knew they had inserted a device that was keeping open a hole in my circulatory system, and it sent me into a terrifying downward spiral of despair each and every time.

Is it a phobia I have, or could it be some form of post-traumatic stress syndrome? One of the nurses I spoke to recently knew that my fear almost certainly emanates from something in my childhood, because with every other needle-phobic patient she has ever met this has been the case. Writing this is the very first time I have been able to share my memories about needle-related matters, and I can’t tell anyone out loud, because I would just sob so much in trying to explain that my words would be incoherent.

People think that needle-phobia is hilariously funny, and immensely immature, and I am expected to  somehow “pull myself together” and be adult about it, but that is so hard.  Two nights ago I just freaked out and insisted they stop the intravenous therapy – I was in such an awful place I couldn’t take any more. I know full well that unless I can find some way of overcoming this blind fear, my cancer may win and I may die.  Everyone who suffers like I do finds it embarrassing beyond belief to actually admit to it, and no one talks openly about it, so that the health professionals who might actually be able to help in accessing effective treatments or therapies simply cannot do so, because people like me find it so hard to explain the reasons behind our fears.

Writing this has been one of the hardest things I have ever written, but I was so shocked that I couldn’t find anyone else who had written about it from first-hand experience that I felt a responsibility to do so. However, naming those fears, sharing the ghosts of my past and reliving those experiences with others makes me feel very frightened and vulnerable all over again, and I can totally understand why I may be one of the first to try and explain the origins of these fears.

I want the very best of modern medicine to try and save my life, and I can’t see how that can happen until I have somehow moved past all my ancient fears – and I simply don’t know how to even begin that process.