In hindsight, my last entry should have been divided into another 2 or 3 posts. Personally, that felt too much like thinking and also because I didn’t want to drag it out or make a spectacle of my medical experiences. It’s not what it was for. I also didn’t realise how much there was to cover since October 2023, it’s not like I’ve made many advances. Like with everything, I write without thinking and post. Maybe a day or two later I go back and check for errors.
The writing for me is about clearing emotions and thoughts, sharing it helps me detach from those feelings and thoughts while also, hopefully, helping someone else in the process.
Writing and posting my story in full felt like a big step in my healing, to me not identifying with the wrongs that have been done in my care. I’ve felt a lot less angry since I released them.
It sometimes makes me feel vulnerable, because I’m divulging very personal information and experiences. I’m sharing my own trauma with the world and if I think on that too much I panic, so I stick with not thinking and hoping that what I share is well received.
But it does open doors for further conversation, particularly around the difference in care from the same health service. I know someone diagnosed with arthritis who has been offered trauma therapy because of how life changing this diagnosis is; they still manage work full time and live a full life, but this condition significantly affects them and comes with limitations. Their condition does cause them mobility issues, fatigue and high pain; the therapy is absolutely what should be offered. But why isn’t that the consistent standard of care?
This is what I hope comes from the work UKCVFamily are doing for the vaccine injured and bereaved. Not just therapy, but this attention to care that shows compassion. I’ve experienced very little compassionate care in this journey, I’ve certainly not been offered trauma therapy because of the life changing health issues I have. I can no longer work, my mums my carer and I’ve only managed to see my friends and family twice since the start of the year.
My story is just one of thousands experiencing the same neglect. That makes me incredibly sad because shouldn’t that have changed by now? We’re 5 years on since the vaccines were released and there has been no improvement in our care or the support provided, because it’s not being provided at all in most cases.
I still have to pay for therapy to cope with the vaccine changing my life so significantly and horrifically. I still can’t get physio, occupational therapy, sufficient pain relief, or even my daily symptoms being accurately recorded in my medical records. Entire conversations are being excluded and I just can’t think of a reason for this at all.
The answer is that there’s no excuse and the outcome is that patients are being failed every day. I will fail to get help for potentially having POTS because there’s nothing about it written on my notes. Doctors will continue to ask why I attended using a walking stick or wheelchair because of the lack of acknowledgment of my diagnosed disabilities on my medical records. And people will see the GP mention my “post-Covid fatigue” before they see the diagnosis of Chronic Fatigue Syndrome because my medical records aren’t up to date with being coded accurately.
This is what I hope to change when I have the energy to formally complain. Not because I have the delusional belief that my one complaint will fix a broken system that covers the entire UK, and the world, but simply because I know mine will add to a long list of other people making the same complaints.
My story, and the story of others, aren’t a conspiracy theory.
If you read one or both parts to my story, thank you – I can recommend some good therapists. If you feel compelled to try and help, please consider making a donation to UKCVFamily to help support their efforts in trying to change the system and get the support people like me so desperately need.