IN APRIL 2021 and July 2021 I had covid jabs (the first AstraZeneca, the second Pfizer) both of which left me severely injured and permanently changed my life. I was left feeling I had no life, no future and no sympathy, as I wrote here. A year later nothing has changed except for the added trauma of navigating a disability system that doesn’t want to know me. Yet my reaction to both doses was both immediate and ongoing. One day a fit and healthy 47-year-old, the next I had great difficulty breathing, felt constant pressure on the chest, and full-blown tachycardia. I couldn’t walk, talk or swallow; my tongue was swollen – the list of my symptoms was endless.
I have been asked time and again: why on earth did you have the second shot? One, because it wasn’t AstraZeneca. And two, when I said I didn’t want it again, the hospital consultant responded, ‘Do you want to die?’ Ten visits to A&E, an overnight stay due to my heart not resetting and various consultants later, I thought I might. Yet I was told, ‘Well, there’s not much we can do . . . maybe you’re just anxious?’ All that was missing was Michael Winner saying ‘Calm down, dear.’ And that sums up the response I have received from the NHS since.
‘You’re just anxious’ is the repeated refrain for vaccine injury. Why do they resort to this insulting brush-off? My observation is that it’s the limited set of (convenient) tests A&E operates with. If these indicate you are not at death’s door, they can just discharge you. After that ignominy comes the fight with GPs over the phone trying to explain your symptoms and to get help, to which I was told: ‘There’s too many symptoms to refer you to a Long Covid clinic and you keep saying it’s the jab . . . maybe you’re just anxious.’ Believe me, I’d take anxiety over this any day! That’s not to diminish the cruel, debilitating impact of anxiety I now do have and for good reason, plus Post Traumatic Stress Syndrome, much due to how I have been treated.
It was as though I am a liar and an attention seeker. One male gastrologist even commented ‘I think you’re looking for attention’ when I explained I was unable to swallow for seven months following the jab. Why was I, perhaps particularly as a woman, treated thus? It became clear that saying ‘it was the jab’ was a complete taboo within the hallowed portals of the NHS. One A&E nurse actually said: ‘You need to stop saying that’. Why? Was it too inconvenient a fact? Was it easier to treat me as a perimenopausal, anxious woman looking for attention than a patient in need of medical care?
Another A&E consultant who discharged me said to his underlings: ‘Well, she’s clearly just stressed with a heart rate like that.’ As though stress is the only reason for tachycardia. When he asked me what had happened and when I explained he looked baffled and annoyed as to how I could have been a fully fit, full-time teacher on Friday and yet on Monday was unable to walk/talk/breathe/dress myself. When I cited the jab as the only causal factor, he replied, ‘I don’t think so, dear.’ Then: ‘Maybe you’re just anxious?’
I had read about how women were treated medically throughout history. In the nineteenth century women were thought to have ‘greensickness’, whereby their wombs supposedly floated around their bodies making them hysterical and irrational. As a student I scoffed at the stupidity of such a notion, but lying in a hospital bed facing a patriarchal consultant who could decide the next stage in my care pathway (and how I would be viewed by the next healthcare professional), I was weak and beholden to his power. I felt patronised and abandoned by the system. Silenced.
The nightmare of this story has continued for more than three years. I lost my home, my job and my ability to function as an adult woman, needing my elderly parents to help me bathe, walk, dress, and feed myself. No help has been offered by the NHS or the social service system, as the motto ‘you’re just anxious’ was written on my medical record. I’ve spent thousands of pounds, like thousands of others, trying to get independent help.
As I claw my way back into society, to work and contribute, I now face the disparaging attitudes of society and employers towards disability and chronic illness. It feels like you’re an inconvenience, an annoyance. Through conversations trying to achieve reasonable adjustments, you realise you don’t fit into the able-bodied world. You can’t move as fast, perhaps lack the stamina to stay at work as late, and so you’re perceived as ‘weak’ or somehow ‘less than’.
For me the historical attitudes towards women and disability, once only read about in books, have become my lived experience. The injustice, the silent, salient attitudes of authorities can be suffocating. Despite employers promoting their ‘Disability Confident’ websites, my feeling is that I am an HR quota of ‘the odd one’. That is the gruelling reality of my disability for me. There is no understanding of what long-term chronic illness is and, being vaccine injury as opposed to ‘long covid’, it is still barely recognised. People’s minds are not shifting because the cause – vaccine damage – is still largely denied.
The benefit system, as reported on these pages, is as chequered and complex. Navigating the pitfalls of Employment Support Allowance (ESA), where you’re screened and assessed by a civil servant, is demeaning and cruel. I had my ESA stopped because I couldn’t get to the phone in time and it was recorded as ‘non-compliance’. The benefit is stopped, a P45 issued and you begin the process again. The same applies to the Personal Independence Allowance (PIP). After completing a lengthy questionnaire, you are screened over the phone to determine if you’re ill or disabled enough not to work. The questions range from ‘How far can you walk?’ to ‘Can you chop vegetables?’ My small allowance was paused when I said I wanted to try a part-time job. I’ve been waiting three months to be reassessed with no feedback.
So, while I’ve learnt a lot through this grim experience – resilience, self-advocacy and how to navigate tricky systems – I am left wondering about the Kafka-esque bureaucratic nightmare that faces anyone who is genuinely disabled. For the vaccine injured it is a double whammy – denied diagnosis and treatment, we are then denied ‘belief’. ‘Anxiety’ once again is a quick and easy opt-out for the medical operatives who can neither prove nor disprove that you are ill, based on their meaningless phone tests. Cruelly, what ‘anxiety’ comes to mean is just ‘go away’. Navigating the health and benefit system if you are vaccine-injured is a challenge beyond belief and traumatising all over again. At every level we, the collateral damage of an experiment that went horribly wrong, are made to suffer in silence. Our voices are too politically inconvenient.