My First Experience of Negativity
What happened when I promoted my podcast and what it revealed about public attitudes toward chronic illness.
My first experience of negativity came about four months after I had launched my podcast Life with Long Covid.
I decided to promote one of my posts on Facebook for a modest sum, hoping to reach more people who might be going through the same things.
To be honest, I forgot about the promotion entirely. It wasn’t until two weeks later, when I noticed a debit from my bank account, that I remembered. I quickly logged into Facebook to stop the ad and review how it had done.
The reach had been impressive, thousands of people had seen the post, and plenty had liked it. But I also noticed a few “laughing face” emojis, which I found intriguing. So I clicked to view the comments.
About thirty percent were positive and encouraging, wishing me well. The rest, however, shocked me. Comments like:
“There’s no such thing as long Covid. Get over yourself.”
“Long Covid? More like vaccine damage.”
“I bet that vaccine was a bitch.”
“Get over it.”
Most fell into two camps:
1. “The vaccines caused long Covid.”
I still get emails from people helpfully pointing out that I’m “actually suffering from vaccine damage.”
Honestly, it puzzles me. Whether my body was damaged by Covid or the vaccine, the results are the same and it’s not helpful to be told which it must be. My writing and podcasts are always focussed on the experience of living with long covid, rather than the causes. For that, I try to keep an open mind; after all, I had the vaccine around the same time as my first infection.
2. “There’s no such thing as long Covid.”
These comments are even stranger. I understand that people troll online, and I’ve grown a fairly thick skin, but to deny that I’m ill at all feels surreal.
I’ve also had well-meaning advice like, “It’s probably in your head,” or “You just need to think positively.” I usually squirm inside, smile politely, and thank them for their “help.”
For a long time, I felt very lonely with this illness, until I found the ME/CFS community online.
This is a group that knows exactly what it’s like to live with an invisible, often dismissed condition. ME/CFS has existed for decades and has had its fair share of negative publicity. Many medical professionals still question it, despite the large body of evidence (and people) saying otherwise.
For that community, the arrival of long Covid was no surprise. Their shared experiences, advice, and coping strategies have been immensely helpful to me since being diagnosed.
There are many overlapping symptoms between ME/CFS and long Covid, and it’s encouraging that the ME Association has now included long Covid in their focus. When I heard that, I was genuinely delighted - finally, a professional body recognising this chronic illness for what it is.
Of course, alongside the conspiracy theories and denials, I’ve also met many wonderful people through this journey. I’ve received incredible support from friends, family, and from you, the people reading and listening.
If you’re part of this community, thank you. It makes all the difference.
Have you had any negative or dismissive comments about long Covid?
Feel free to share below — I’d love to hear your experiences.
Paul
Life with Long Covid is more than a few articles; it is also:
A community which you can find at www.lifewithlongcovid.co.uk
A podcast which you can access through the website or through Apple and Spotify, just search for ‘Life with Long Covid’.
I have also produced a short book that details some of my podcasts in short, easily digestible chapters. You can read it when you have the energy. It’s available on Amazon here.
Sales of the book help me with the cost of the podcast and website. You can subscribe to receive the latest articles and episodes in your email inbox. This is free, but there is also the option to pay monthly or annually to receive it. To the people who feel able to support me financially, I am very grateful to you.
I have ME/CFS and have been housebound and bedbound for 10 years now. I've heard so many dismissive things, often from doctors, though that doesn't happen as frequently since I now have years of blood work, tests and procedures that have come back as abnormal or positive. I hate that people treat us this way. I'd much rather be working or doing something fun than staying home in bed all day.
Sounds all to familiar. Unfortunately. My mom got sucked into the "covid conspiracy" pipeline, her last comment "You know it was the vax, right?"- in my case highly unlikely and even if it was the case, as you said WTH does it even matter? Stay strong pal. Subscribed✔