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Happy Birthday Long Covid Podcast - some thoughts

Updated: Nov 18, 2022

A year of the podcast - in some ways I'd see this as a celebration - I've been doing this for a year & that is an achievement.

Podcasting for a year would be an achievement even if I wasn't unwell. So doing this whilst living with Long Covid (oh how I HATE that phrase) is probably even more so.

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The Long Covid Podcast has given me a way to have purpose in my life - something I felt I'd lost especially when I was forced to stop working. It has also enabled me to reach out and help a lot of people as well as myself, by bringing together lived experience stories, researchers, medical experts as well as recovery stories.

I still see myself as a bit of an imposter, but when I truly think about it, the podcast is something that I'm immensely proud of.

It's not about download numbers or feedback (although getting a message from someone saying that a particular episode has helped them definitely gives me a little boost, I'm not gonna lie - I'm as human as anyone else!)

What what makes me...upset, MAD & just downright depressed is that the podcast is so needed.

Somewhere in the region of 2 million people in the UK are estimated to be affected by Long Covid - a lot of these people are from the first wave, like myself, and are still not able to work. That's nearly 2 & a half years.

I heard the figure 144 million worldwide the other day - that's an unimaginably large number of people who have had their lives completely turned upside down by Covid, and yet these numbers are not really acknowledged by governments, policy-makers and even some doctors. People with Long Covid are still being gas-lit - which adds a huge burden onto an already traumatic experience.

So alongside this sense of pride of what I personally have achieved, I feel an overwhelming sense of utter despair.

People are developing Long Covid daily, and are pouring into support groups which are already swamped with people.

There is now a lot more information out there to help people starting on this journey - which is wonderful. My previous blog - "I wish I'd known" talks about the things I wish I had known at the start - and these are the things that will help people starting down their Long Covid journey now. And the sooner they start doing the right things, the better chance they have of making a faster full recovery.

But we still don't have a full understanding of the pathology. Not everyone is the same - some are affected more severely than others. Why? Why are some people developing it in the first place, whilst others don't? There is lots of research being done - which is wonderful. And I'm hopeful that there will be things developed to help people.

But in the meantime, people suffering with Long Covid are losing their jobs, homes, families & livelihoods. The mental burden of being so unwell for so long is huge - there are people taking their own lives which is utterly tragic (& I have to beg anyone with thoughts along these lines to please please please reach out for support - either on social media or via charities and I'd be happy to signpost if I can).

People with Long Covid need support - financially, socially & emotionally RIGHT NOW. We need to be believed by the medical community - many symptoms can be managed, improved or even sorted with the right interventions. There are many many things we can do ourselves to help the healing. But only with the right support.

If we are forced to work because we need to support families, pay bills & keep our homes, then we will be put in a position where symptoms will get worse, and recovery more difficult.

And this brings me to think about people who have been ill for longer than Long Covid has been around. For me, being ill for 2 & a half years is absolutely the worst thing that has ever happened to me. It's awful. But post-viral illness is not a new concept. It has been around for a long time and there are people with ME/CFS some of whom have been ill for decades, and this, for me, is utterly unthinkable.

Before I developed Long Covid I had a couple of friends with ME. I thought I understood it. But now, I realise that I had NO idea. I mean, how could I? I think until something happens that affects every single aspect of your life, like Long Covid or ME, or other illnesses, it really is impossible to understand. And this allows me to be a little more forgiving to people who don't understand what I'm going through now.

But there is no excuse for gaslighting. Ever.

My real hope from all of this, is that Long Covid can help those who have been suffering for so long. We have to work together. People with ME/CFS have been trying for years to raise awareness and to get treatments, research etc.

We, as the Long Covid community, need to learn from them, support them, lend our voices to them and work together. We have the same aims.

Because however awful we think 2 & some years is, these people have been ill & fighting for longer.

This blog didn't go the direction I expected - but that's ok! It's my thoughts tumbling out. If you got this far - well done, & thankyou!

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