Monday, 4 July 2022

Another Depressing Week in the Life of Long Covid

 It’s been a while. Again. Unfortunately, when you’ve got Long Covid, you have to balance up everything and the energy cost of it. A combination of visits, appointments, plus relapse and ongoing meetings, as well as having to rapidly respond to the release of new guidance last week means the blog has had to take a back seat. 

We all discovered, those of us in healthcare with Long Covid, that our special leave - as in full pay, not counted as sick leave - is now coming to an end. For some, it’s been sooner rather than later. As you can imagine, for those of us on our own, this has been a worrying, stressful week, not least because there continues to be silence on the issue of occupational disease compensation and pension, as well as pensions. To say many of us feel like we are being thrown out like rubbish is probably an understatement. 

This week, I was also signed off by physio; not because I’m fit and well again, but because there is nothing they can do for me. I cannot participate in their programmes because I am not well enough. After two years. They also admitted their rehab is based around graded exercise therapy - which is not warranted as I am now suspected to have ME as a result of Covid. 

On top of that, there was another seizure. Which is very, very alarming. And I also have a large cyst which may require surgery if it does not go away on its own. 

I read horrifying stuff today - two individuals who have been moved to more advanced sickness procedures IN SPITE of the fact that existing guidance says not to do this AND that the new guidance says to set as if for day one the first day after existing guidance ends. I have given the best advice I can - which is that this is not correct and to contact union or legal representation as soon as possible. After two years, guidance on an extended phased return is being ignored, despite industry stating this is best practice. 

I am left wondering: Is this discrimination rearing its ugly head?

My experience of working in healthcare has often not been a happy one and that’s certainly the case over the last ten years. I moved from a post where my training was going to be advanced quickly, with excellent promotion and career prospects to one where I was bullied, harassed and discriminated against for having chronic conditions and other protected characteristics. It has left me believing that my colleagues are fundamentally ableist or at least demonstrate significant unconscious bias when it comes to their understanding of what disability means. There’s certainly a massive disconnect when it comes to their beliefs about conditions. 

My fears around discrimination, from what I hear from others, is coming true. Colleagues across the U.K. experience disbelief and hostility from colleagues over their ongoing symptoms, with those individuals ignoring the basic tenet of what we were taught - which is that patient experience is individual. The stress of this, of worrying about posts, being expected to “keep up” is causing relapses all over the place. Some have been sacked, others pressured to resign. 

I do not know what is next for me. I suspect it involves longer discussions with my rep, my union, lawyers. I know it involves continuing to make sure the voices of those in my profession and others with long Covid are heard. It means speaking to a lot more media, more politicians. I would like to see myself continuing in a work role, but I do not know what that will look like. That, on its own, is scary. 

In the meantime, I will have to fight to retain my salary for at least the next nine months. I can perhaps pay my mortgage for three months beyond that, if I am lucky. I may have to get in a tenant, which I am reluctant to do, because of the risk of catching Covid again. Plus, being disabled, it’s not often the best option either. And I’m not tidy at all. 

So is what’s going on discrimination? Yes. Absolutely. We, the tired, sick ones who are being deliberately ignored by people in power are suffering AGAIN. All we did was do our jobs. Many of us should not have been going in to work. Instead of wasting huge sums of money on faulty PPE, consultations on image and failed T&T, these individuals could have created a fund to ensure we were not financially destroyed, that our homes were safe, our debts paid off with full pensions. 

I continue  to scream into the social media void and hope someone, somewhere will listen. But a Lottery jackpot win would also improve things considerably. 

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