How The Hidden Voices of Long Covid has raised awareness of lived experience – and the devastating long-term effects of the coronavirus pandemic
Long Covid has affected millions of people around the globe since the beginning of the coronavirus pandemic – and continues to have a profound and devastating impact. We spoke to Jasmine Hayer, creator of The Hidden Voices of Long Covid, a year after its launch about her continuing work fighting for visibility and awareness.
The Hidden Voices of Long Covid project was launched in June 2021, and a year on the need for visibility and awareness is arguably greater than ever, with more than two million people in the UK alone living with Long Covid. Now also an Ambassador for Covid Aid, we spoke to Jasmine in detail about the project, its need and impact to date, and her hopes for the future.
What is The Hidden Voices of Long Covid project?
The Hidden Voices of Long Covid Project is a community project, consisting of two parts: the first is a blog to highlight the severity and impact of the condition plus using my story to raise awareness about post-covid microclots, and the second is a gallery of the lived experiences of 201 Long Covid sufferers.
It’s the heart-wrenching lived experiences of the reality of Long Covid, in the words of sufferers themselves.
What inspired it?
The idea for The Hidden Voices of Long Covid project arose when I received hundreds of messages last March after I published a blog about my diagnosis (which unexpectedly went viral) and after this BBC article came out about my Long Covid hell.
As one of the earliest groups of long haulers, I watched the rise of hundreds of thousands of sufferers from all over the world, in Facebook and Slack groups since May 2020, sharing devastating messages about not recovering from covid. And I was one of them.
Only long haulers in social media groups and a handful of doctors and researchers knew what was unfolding. The rest of the world had no idea. It felt like we were living on two different planets, screaming “watch out for Long Covid” to the rest of the world, but no one could hear us. It was physically, mentally and emotionally torturous and the most isolating feeling in the world.
Long Covid cases weren’t being counted, therefore we had no data to measure the magnitude or compare research - so it’s no surprise that journalists weren’t covering it, except the odd anecdotal story; they had nothing to back it up. Yet, this was happening to millions of us; no one was talking about it and doctors weren’t even acknowledging it. It felt scandalous.
It felt like the world’s biggest secret.
The devastating messages in the Facebook groups weren’t new for me to read but what was new was that people were personally sharing their stories with me, after I’d publicly shared my experience.
It was deeply painful to read an avalanche of stories echoing the same story — my story and something that I was still haunted by:
“I used to be so fit”
“Now I can barely walk”
“My doctor doesn’t believe me”
“Thank you for making me realise that I’m not alone.”
I became overwhelmed with the magnitude of despair.
Triggered by deja vu.
Enraged by our collective battle to be believed.
A dark night of the soul led to me finding holocaust survivor Viktor Frankl's philosophy - I needed to create something and take action.
Channelling this anguish, I decided then and there — the world needed to hear their stories and I needed to make this happen.
What was the process like?
My lungs relapsed and I was sofa-bound and bed-bound for months whilst creating this project – it was emotionally and mentally the most gruelling work that I’ve undertaken, yet equally the most purpose-filled and fulfilling.
I didn’t even know that I was suffering from PTSD back then but I recognise what it was now, and as a result, I was living my own trauma plus feeling the pain of every sufferer’s story. I cried after reading every story – there were 320 messages altogether so you can imagine! I had to take many breaks because it was just too painful and distressing but I finally got there, thanks to the amazing support of the community and loved ones cheering me up.
In Punjabi culture, we have a saying that ‘one person is alone but two people are the strength of eleven’.
Seeing stats is one thing but reading about what Long Covid had done to people’s bodies, mind’s and lives in their own words was another. And seeing all of our stories put together created an overwhelming sense of this crisis that was unfolding – our reality.
I wanted to show their names and pictures to prove the authenticity of the stories too.
I shared a call out on social media and asked sufferers to include their age, their symptoms, when people first caught covid, their previous fitness level and what they were unable to do now, their experience with getting medical help and how it affected their life and mental health.
It was important to me to show a wide representation of sufferers – highlighting the effects on children (which I found the most heart-wrenching), doctors and nurses and people who were very physically active. Medical professionals with Long Covid risked their lives to treat others and now they themselves were severely debilitated. Plus, hearing stories from them gave the project greater ‘validation’ – as if people ‘believed’ it more if it came from a doctor or nurse.
This project was essentially built on trust. It takes a lot for someone to open up and share their story – I know, because I did it many times, plus we’re experiencing the trauma in real time and communicating that with words when you can’t think of the words is no mean feat. I felt a deep sense of humility and gratitude that they trusted me.
The project has a trigger disclaimer before people read it – I knew that the project was likely to cause emotional distress from reading other’s stories and also seeing what happened to me was alarming for fellow Long Covid sufferers. I didn’t want to insinuate that all Long Covid sufferers had blood clots so I needed to be careful with my words. However, it was an issue that would affect some (and even doctors weren’t aware of it at the time) which is why this awareness needed to be raised, urgently.
The tagline of the project is “you never think something like this will happen to you, until it does” – I wanted the public to understand just that - this could happen to them too. The majority of us were very fit, had ‘no pre-existing issues’ (many share the misconception that we didn’t get better because we had ‘issues before’ which simply isn’t true). Even if we did, that’s not the reason why we didn’t get better.
I had something that most long haulers didn’t have – evidence of a new medical diagnosis. I was one of the lucky ones to have found a specialist that believed me and carried out extensive testing with the results defying respiratory medicine.
For the many that were still being disbelieved, I felt a duty to use my story to educate people. It shouldn’t be this way – I shouldn’t have to ‘use my story’ in the hope that it can educate medical professionals treating other Long Covid patients, but this is the stark reality that we were living in then – and one which we’re mind-blowingly still living in now.
The project had five main aims:
1. For long haulers to use the project as a tool in their advocacy for further testing.
2. To show long haulers that they’re not alone
3. To inform doctors and researchers about our lived experiences.
4. To raise public awareness of what it feels like to have Long Covid and the disastrous impact on the quality of life, particularly in non-hospitalised patients.
5. To help the #CountLongCovid campaign.
Also, I couldn’t talk because of the fiery sensation in my chest and severe breathlessness, so trying to explain to loved ones what was going on was hellish. I knew for others it would be the same. They could send this project to their loved ones to show them: ‘Look I’m not the only one suffering – the severity of this isn’t in the news yet but it’s very real.’
What response have you had to the project?
It was really overwhelming – I cried tears of joy when I received messages from other sufferers, sharing that it made them feel less alone, they felt that their voice was stronger and they shared it with their doctors who were gaslighting them!
Looking back, I could have ‘promoted’ it more but in all honesty, after the project was published, my mental health was very affected and I was completely emotionally and mentally burnt out. So I was really pleased, relieved and grateful that the Long Covid community shared it so widely and that it was able to catch the attention of long haulers, physicians and researchers.
It was viewed 6900 times.
It’s been used as an official resource in the largest Long Covid trial to-date: STIMULATE-ICP and the trial lead Ami Banerjee asked me to present it to the National Institute for Health Research.
It was covered by BBC News and The Telegraph too, which was amazing for the project to be seen by a wider proportion of the population – the BBC News article had 1.2 million views!
Heads of Long Covid clinics and physicians treating Long Covid patients shared that it was an eye-opening document to educate all medical professionals about the severity of the condition.
Doctors and nurses shared that it was being circulated in their practices/wards and some included it in their training to GP’s about the lived experiences of Long Covid.
It inspired another Long Covid sufferer to create The Lost Voices of Long Covid in Northern Ireland! It caught the attention of Covid Aid too and that led to me being asked to become an Ambassador. There’s a potential opportunity to have it in an exhibition too.
I really hope that this tool can continue to be circulated to help sufferers experiencing medical gaslighting and to inform medical professionals.
Were there any recurring themes within the public responses? Did any of them surprise you?
The recurring themes were tragically what I had expected - many shared that walking around the house or to the end of the street felt like they’d run a marathon – a racing heart rate, severe breathlessness, post exertional malaise [PEM], thus were physically unable to carry on. Many like me, weren’t able to even walk around the house due to pains and breathlessness.
You could feel the palpable grief in every story - not only from the severity of debilitation but the lack of help, guidance and extensive testing, which left sufferers in a state of isolated limbo.
Common symptoms included severe breathlessness, PEM, chest pain and cognitive dysfunction, to name just a few.
A running theme throughout the majority of the stories was the experience of being medically gaslighted, the stigma of having Long Covid and the uphill battle for investigations. Many were trying to get into Long Covid clinics without success and others were experiencing very slow progress.
The relapsing nature of the illness was prevalent across the stories; adding a further perplexing layer to the existing grief felt as you read through the collective stories.
Another theme was how this was affecting our work and lifestyle – there was a clear sense of natural despair and anxiety for the future due to sick pay’s ending and warnings of dismissal. We were effectively seeing our livelihoods going down the drain!
I wanted to include stories of both vaccine injury and vaccine improvement to represent both sides of the spectrum.
As you read through the stories, you feel the desperation and trauma of sufferers being brought to their knees by this virus and naturally, the heavy toll this has taken on their mental health as a result.
Something I was really moved by was the remarkable resilience and fortitude of sufferers to keep on searching for answers and better health – we were all quite frankly fighting for our lives! I know how tough that is to navigate. Another positive theme was the collective gratitude that we all felt for the social media groups and connecting with others like us – we weren’t alone in this.
I wanted to create a quantitative analysis of the project but I couldn’t bring myself to go back and feel the pain of reading each story – if anyone would like to help with this, I’d be very grateful!
What are your aims for The Hidden Voices of Long Covid project one year on, and what outcomes do you hope to achieve?
In all honesty, I hadn’t promoted it as much as I wanted to, purely because I was suffering from some pretty intense PTSD. But I’d really like to raise awareness of it again, particularly for the newbie cohorts of Long Covid.
I hope that the project continues to be circulated online.
I hope that it continues to be shared amongst medical professionals who aren’t being told about the severity of Long Covid and those who think of it as just ‘a bit of fatigue’ or ‘anxiety', which will get better on its own. I hope that it helps to shift their perspective and open their eyes and minds.
There’s a very similar journey which the majority of Long Covid sufferers experience – the trauma of being gaslighted, being unable to get into clinics or getting in and being told that they’re not set up for extensive testing, the mental health impact of losing your physical ability to live as you were, people around you not believing you, the despair of trying to make others understand what it’s like for you and the loneliness that you feel – why did everyone else get better from covid but you haven’t?
These sufferers aren’t alone – there’s millions of us and we’re experiencing this torturous journey as a collective; united and in solidarity with each other. I hope that reading these stories helps more fellow sufferers to know that we stand with them – knowing this alone can help to bring strength in times of immense isolation.
Most of all, I hope this project can help to give more people a voice when they’re struggling to explain the perplexing nature of this illness – it’s not just them, this is a hidden health crisis and the public need to understand how debilitating this really is.
How would you describe your own experience of Long Covid now, compared to when you first recognised your symptoms? Also, what tests and treatments have you undertaken since then?
I was gaslighted for the first nine months – told that my symptoms were because of the ‘trauma of having Covid’, only to see a different specialist and be diagnosed with the equivalent level of damage as a covid ICU patient, including a new type of post-covid blood clots in the lungs!
Since then, I’ve had a very wide range of extensive lung and heart testing, which I’m beyond grateful for!
I’m being treated by Dr William Man and two other specialists at The Royal Brompton Hospital, and have been put on two clinical trials of two medications – apixaban (a blood thinner) and colchicine (an anti-inflammatory), which were both thankfully successful. These medications are now being used in the largest Long Covid trial to date STIMULATE-ICP, which I’m a patient advisor on.
Since then, I’ve been diagnosed with microscopic clots circulating around my body via UCL scientists and a private clinic in Germany. It sounds like science fiction but scientists were studying my blood under a microscope and found abnormalities which hadn’t ever been detected via extensive testing in the NHS – it’s a new medical discovery!
In a few months, I will possibly trial triple blood thinners, however it goes against the medical rulebook as there’s a serious risk of internal bleeding, therefore doctors can’t be seen to ‘experiment’ with triple blood thinners. It’s a very difficult situation for both doctors and patients and one that leaves us pitted against each other.
In the meantime, I’m experimenting with Vedicinals-9 – a nutraceutical (high potency natural formula), created by a Germany-Indian biotech company and I’m shockingly seeing significant progress! Though, how long this lasts is yet to be seen.
What does the landscape for Long Covid patients look like today – has there been an improvement in professionals listening and responding appropriately to people’s concerns?
I wish that I could say yes to this question but we’re seeing the same stories now that myself and hundreds of thousands shared in Facebook groups back in 2020 when Long Covid wasn’t even a term – “my doctor keeps telling me that I have normal test results and that I’m suffering from anxiety.”
I’m working with Professor Nisreen Alwan to investigate the stigma experienced by Long Covid sufferers and the uphill battle faced by them to be believed and to access treatment – this investigation forms part of the STIMULATE-ICP trial.
There’s ‘some improvement’ in the way of trials and more media exposure about the magnitude of the illness, however in reality, it doesn’t scratch the surface of treating fellow sufferers in this health crisis right now.
Plus, there are no trials about the new medical discovery of microscopic blood clots found in Long Covid patients such as myself, which is why we’re all flying to Germany!
This article by fellow Long Covid advocate Charlie McCone puts it aptly.
If we zoom out, we’re looking at medical gaslighting on a mass scale, due to the disparity in knowledge amongst medical professionals treating Long Covid patient's. As a result, patients' physical and mental health is rapidly deteriorating, just as mine did.
When we zoom out further, this disparity is due to medical professionals not being consulted about the findings that are happening in Long Covid clinics and specialist hospitals treating Long Covid patients.
Put it this way – it took my official complaint to the CEO of the previous hospital (one of the top three hospitals in the UK) who gaslighted me, to team up with my current specialists and swap research. And the most shocking part? These two hospitals are in the same trust.
Then, there’s the postcode lotteries of accessing a long covid clinic, only to find out that the clinics aren’t funded for extensive testing.
When we zoom out even further, we’re looking at not only the disparity in knowledge about what Long Covid is and how to treat it, access to extensive testing and experimental treatments in different hospitals and Long Covid clinics plus the existing inequalities of care pathways from socioeconomic areas, language issues and pre-existing mental health and pre-physical debilitation, to name a few.
When we look on the NHS website, it defines Long Covid as ‘extreme tiredness’, ‘heart palpitations’, ‘depression and anxiety’ – what it doesn’t state is post-covid blood clots, heart inflammation and complete cognitive dysfunction. Australian scientists have recently found that Long Covid sufferer’s cognitive symptoms are similar to a traumatic brain injury. We have the evidence, it’s just not being shared.
Due to this highly reductive terminology, doctors aren’t taking Long Covid patients seriously because they themselves haven’t been consulted on it. I’ve seen this firsthand – many doctors whom I know tell me “we just haven’t been told anything about how to treat this or what’s been found in patients like you.”
Where does this leave existing patients who don’t have the privilege of seeing the small handful of specialists who are ahead of the curve?
Where does this leave the new waves of Long Covid sufferers?
We need collaboration, transparency and communication from the very top of the medical system, to filter down to the doctors treating us. Not the other way around – we shouldn’t have to go to our doctor with print outs of medical journals and media articles, trying to make them believe the medically defying discoveries that have been found.
How can we – the public, employers, healthcare providers and government bodies – improve our attitudes towards people struggling with Long Covid?
There’s many layers to this answer, all inter linking. I think it falls into four categories
Communication and education
Listening, empathy and respect
Employer and Government support
1) Communication and education
The change in attitude from the public and employers about Long Covid will only be fully reflected with widespread public messages from the Government and the NHS, sharing the mass severity (and full spectrum) of what Long Covid exactly entails. The public and employers will only believe what’s being shared in the media and the media is only going to share what information is shared to them via official institutions. The communication relies on a domino effect and as these dominos aren’t moving, the awareness about our disability is completely hidden. We need this communication to be prioritised as a matter of very literally, life and death.
We need education, education, education, to be filtered from the top of the medical system all the way down so that no Long Covid sufferer needs to face the added agonising trauma of medical gaslighting nor fighting for treatment.
2) Trust us
We need everyone to trust us - from our doctors, to our employers to our friends and family! Many Long Covid sufferers may not have a diagnosis yet and that’s because of the effects of the virus defying the normal medical testing protocol, not because of their mental health! We need that trust because we’re in a post-covid world, wading through the unknown with researchers leading the way to try and figure out the pathology of Long Covid - and we’re the evidence.
3) Listening, empathy and respect
Listening and I mean really listening to the lived experiences of patients is key to understanding and furthering research into Long Covid. We can learn much from ME sufferers who have experienced very similar journeys. A ripple effect of mass chronic illness has happened simultaneously and we have an opportunity here to raise awareness, education and understanding of how the trauma of physical debilitation affects mental health, our entire identity and livelihoods. This isn’t just about Long Covid, this is about all hidden illnesses – for the public to learn and understand chronic illness – you can be severely ill on the inside and look completely ‘fine’ on the outside.
We’ve all changed since the pandemic – we’ve all been through a collective trauma, being faced with our mortality – some more than others and we’ve all experienced a kind of mass awakening to what’s really important in life. Many of us became kinder people - many of us wanted to help those suffering, whether that was grocery shopping for neighbours when they caught covid or volunteering in hospitals.
We need this greater level of compassion and empathy to continue for those who didn’t get better – after all, isn’t this how we’re going to create kinder and more community driven communities and generations? Most importantly, when it happens to others, they will be more prepared about what to expect.
I am deeply moved by our collective resilience, not only as Long Covid sufferers but from connecting with other chronically ill sufferers too. There’s a grave misconception that we’re ‘weaker’ and a ‘survival of the fittest’ culture certainly exists. Many of us are ignored because it makes others feel uncomfortable and I say, we should be treated with the utmost RESPECT for enduring profound debilitation and persevering. It’s only when others who you know are injured or their loved ones don’t get better and voila, they’re able to somewhat relate to you – only then, do people truly understand.
4) Employer and Government support
A recent report by the Independent shared that 10,000 NHS staff are off sick for longer than three months due to Long Covid and Reuters recently shared that Britain’s workforce is around 400,0000 smaller than before covid – Long Covid sickness accounting for two thirds. These figures are only going to continue to grow and that’s not taking into account every single person in the country suffering from Long Covid. Many of us have lost our livelihoods because our debilitation no longer allows us to work; many are nearing the end of their sick pay and others desperately trying to work to the detriment of their health.
The Government needs to prepare employers for what’s already here and what’s coming but they’re not even mentioning Long Covid. We need urgent public awareness about this health crisis, to not only support employers with greater understanding and instil empathy but equally to support the economy and workforce of this country. We need greater support from the Government - increased post-covid sickness benefit and compensation for NHS workers who can now longer work due to such debilitation from the virus. We compensate the army for risking their lives so why aren’t we doing the same for them? What does the clapping on the street mean now when NHS staff are being dismissed because their sickness pay has ‘run out’?
How would you like the project to be considered?
This project isn’t ‘my’ project – it’s a community project and it wouldn’t have been created without the bravery of every single Long Covid sufferer who shared their story, plus the momentum of the ones who circulated it.
I think The Hidden Voices of Long Covid Project is an example of what can happen when the community comes together – one idea turned into a powerful resource which has been shared widely and used for official trials.
Many of us feel frustrated and we want to ‘do more’ to raise awareness about the hidden debilitation from covid. If I could give one piece of advice, it would be that you don’t need to carry the weight yourself – ask for help, team up with other Long Covid buddies and do it together. I hope that we see more projects, storytelling, advocacy in all forms – collaborate, share, unite.
Long Covid was created by the unity of patient advocacy – we have much to do yet but we will go further together.