The Hidden Voices of Long Covid Project

You never think that something like this will happen to you, until it does.

[Open on desktop —*warning* the content and stories may cause distress / be triggering to read].

1 in 10 of us who have Covid will experience symptoms for 12 weeks or more.

These are just some of the brave voices behind the hidden struggle of Long Covid in the UK (otherwise known as post-Covid syndrome).

These stories have been collected since April 2021, from largely previous fit and healthy people (including children), without pre-existing conditions, whom experienced Covid, weren’t hospitalised and now who’s health has been destroyed by the virus.

I am one of them. Today, marks 15 months since I first had Covid (14th March 2020) and I’m still largely housebound.

Covid can leave behind a string of various mysterious symptoms, many of which can be extremely hard to clinically detect.

Just as I experienced, countless Long Covid patients are not given the extensive testing that they need — their initial tests appear ‘normal’ and their symptoms are written off as ‘anxiety’.

Just because there’s not evidence for something ‘yet’, it doesn’t mean it’s not there.

Via extensive testing, I’ve now been diagnosed with the equivalent ‘lung gas transfer’ as a lung disease patient, although my CT scan is clear, (a pattern seemingly emerging amongst long haulers), plus fluid around my heart and unexplainable blood clots in my lung — the latter defying the medical system.

My case is currently being written in a medical journal.

Now, imagine what could be happening in the bodies of the countless patients who are equally being dismissed?

One of the problems may be clotting, which is occurring even in people (like me), who managed their Covid illness at home, as highlighted by my life-saving respiratory consultant, Dr William Man, who runs the Post Covid Recovery clinic at The Royal Brompton Hospital.

To learn more about Long Covid and what specialists are seeing at the UCLH post-Covid-19 clinic, please read this.

Long Covid is a new condition created via patients feedback, which the world is still learning about. Consequently, doctors are learning in real-time, therefore ‘really listening’ to the patient alongside an open minded approach is critical, now more than ever.

Now, we’re asking the world to listen.

This is much more severe than anyone thought possible. We thought we’d recover after a few weeks, since most of us weren’t hospitalised, yet for many of us, we’re still here over a year later…

Approximately 1.1 million people were suffering from Long Covid in the UK in February alone this year.

At least, 122,000 NHS staff, who risked their lives on the front line to save others are now long haulers and many are unable to work as they did.

The impact on the economy has already begun.

As you can see, a hidden health crisis has been unfolding before our very eyes.

The Government’s narrative is that we either ‘contract covid’, ‘die’ or ‘recover’ — it’s misleading and it needs to change.

That’s why we need Long Covid patient registers, proposed by Dr Nisreen Alwan — an Associate Professor in Public Health at The University of Southampton.

“…how will health and care systems prepare and accommodate for the sheer demand on services? How will the economy accommodate for the loss in productivity due to sickness?…I have also argued for the use of long COVID patient registers. Otherwise, how can we address what we are not measuring?“ — Dr Nisreen Alwan.

That’s why we need three statistics in this pandemic: 1) New cases, 2) Tragic deaths, 3) And those left debilitated as a result of Covid.

Please sign THIS petition to urge the Government to officially #CountLongCovid patients in their communications to the public.

Please help Long Covid patients to be seen, heard and treated.

You never think that something like this will happen to you, until it does.

201 long haulers, 320 messages.

“I am 11 years old…In December 2020 I tested positive for covid…I started to feel a bit better and then after 2 weeks I started to feel unwell again…The doctors said this was because of the covid and I should feel better after a couple more weeks…I struggled with eating because every time I did I was in severe pain and it would go straight through me…they came back that I had inflammation in my gut…I was put on medication but this didn’t help…I had gone weeks without eating properly but still having diarrhoea which has lead to my body to struggle and on the verge of shut down…I have been living with a feeding tube which I am connected to every night for 12 hours and feed is pumped into me through my nose…I now suffer with many symptoms of long covid every day such as constant nausea, eye pain, hot and cold sweats, headaches, fatigue, dizziness and many more.”

“I contracted covid late March 2020. Usual symptoms but was back at work after 3 weeks with just a lingering sob on exertion and the occasional twinge in my chest…Started work for the ambulance service in early May 2020…In September we had a mass outbreak in the control room…From then on things went downhill…Increased levels of breathlessness and chest pain, dizziness, constant cramp in my lower left leg and foot, external swelling around my neck, sensations of choking, intermittent hoarseness and a couple of episodes of fainting. Was sent home from a shift on December 12th and haven’t been able to return as yet.”

“I have already had one written warning for absence under the school sickness policy and if I go back off, it won’t be long before I’m dismissed.”…If I could go back to November last year, I’d have isolated my daughter in her bedroom and tried to prevent the rest of us getting it.”

“I’m 29 years old and I caught covid March 2020. I was previously very fit and active; I travelled alot and thought nothing of walking 6 miles at a time. It’s completely taken over my life. I’m still not working and my activity is limited. I’m at the stage where a low energy social outing means a two day recovery. I have SOB, aches, brain fog, pins and needles, sickness and fatigue. It took 7 months to convince a doctor to do any sort of test. Over a year on I now use an inhaler and am waiting for an appointment for a long covid clinic.”

“I was 27 when I first got symptoms…antibiotics for pneumonia…Out of nowhere long covid hit and I was floored again and because of this my work place sacked me and after 15 months the symptom list keeps getting longer and all the tests come back with nothing wrong…I am now 28 but I feel like I’m 88…physically mentally and financially is horrendous especially when you feel like your not believed, so if you know some one with long covid please don’t doubt them we are living a shadow of our old lives and we just want them back.”

“I am a full time senior lecturer…I was diagnosed with Covid...I thought I would then feel better but it was just the start. Palpitations, nausea, sweating alongside other symptoms 24/7. I have felt as ill as I did in the ambulance on the way to hospital. Without the Long Covid Facebook page I believe I could have gone under…So many tests come back normal and yet I can be in bed for 22 hours a day ! We need to be acknowledged and this illness recognised for the sake of all those who will sadly follow us……”

“I am 36 and caught Covid in March 2020, most likely whilst at work as a nurse…I was floored for 3 months, breathless with severe fatigue and many more random symptoms…I was left bedbound after an increase in my hours. For the last 6 months, I have had debilitating fatigue, insomnia, shortness of breath, brain fog, chest pain, altered smell and taste, headaches, pins and needles…After having an AZ vaccine I have become similar to last year…but my GPS’s are definitely taking it seriously this time…It’s been 15 months of having no life, feeling so unwell…my career potentially ruined.”

“...I was working full time as a respiratory consultant in a major teaching hospital..I acquired COVID19 from work in November 2020..my initial illness was mild; however a month later I developed a number of new conditions as part of Long Covid…I’m now confined to bed for a large part of the day…I do not know when I will be able to return to work…I worry about the future, as Covid pay it’s only for one year. After that, continuation of pay is at my employers discretion…despite being a senior doctor myself, I have sometimes had to fight to obtain the necessary investigations and treatments.”

“Before I caught Covid 29/12/2020 I worked full time in A&E as a nursing assistant. I’ve been diagnosed with long covid induced pots and am on medication to control my heart rate and blood pressure… In order to take my daughter to the park I have to go in a wheelchair. I’m hoping to get better, and we need to raise awareness of long covid.”

“I tested positive for Covid October 2020. Like many people I assumed once the acute symptoms had subsided, I’d be back to my normal self…Each morning I woke up feeling like I’d been drugged with intense headaches and brain fog…couldn’t walk and talk at the same time without getting out of breath…the breathing practices continue to help manage my symptoms…the doctors are learning from us. And that’s quite a scary place to be…”

“I’m a nurse aged 28 and caught covid in October 2020. Prior to that I had lived an active and outdoorsy lifestyle. For the past nine months I have been housebound, needing help from my family members with my daily needs and unable to be a mum to my 2 young children…have been diagnosed with POTS, blood clots, Vasculitis, Raynauds, MCAS and I am waiting for tests for peripheral neuropathy.“

“…Tested positive Jan 2021. Had a failed return to work in Mar and have been off poorly since with a whack a mole of symptoms, including fatigue, breathlessness, chest pain, muscle pain, dizziness etc etc…Joining the FB support group was one of the best things I did, I no longer felt alone…They offered practical advice and emotional support…I’m worried about what the future may hold. I go to half pay in August.”

“I am 54 and (was) a gastroenterology consultant. I am month 15. I went to A and E in March 2020 with severe chest pain and was discharged despite covid pneumonia on my CT and low oxygen levels…At month 9 , I was finally diagnosed with multiple pulmonary emboli and treated…my breathing has only marginally improved on anticoagulants. I am housebound. I can only walk a few yards. I don’t know if I will ever recover. I can’t be a doctor and I don’t know if I ever will be again.”

“Age 26 and a very keen cyclist, probably doing around 100 miles a week on my bike…I caught Covid-19 at the tail end of October 2020…I had mild disease…I’ve honestly had worse colds…Around November I started experiencing severe insomnia…into June I seemed to have suffered some sort of relapse and my energy levels and brain fog began to get worse again; trigger unknown!”

“I’d also like to point out that in Scotland currently we have NO Long Covid clinics and our care is in entirely the care of our GP…now an additional 86,000 people in Scotland…getting referred to specialists seems like some sort of uphill battle.”

“Yes is it anxiety, we’re all incredibly anxious; but that’s because our health has been taken away from us and help is so hard to come by…I’m thirty years old and had Covid for three weeks last June…Before having the virus…I was working out four days a week at home including running on my treadmill…I’m still unable to do more than walk on my treadmill without lying awake all the next night with chest pain and a painful chesty cough…When it comes to seeking help…turned away, and generally…told that told that I’m fit and healthy (“so don’t worry”).

“Consultant Genetic pathologist and Cancer Geneticist…Infected 28 Feb 2020…affected badly, but not admitted, so not tested…lateral flow antibody test 24th March (day 21) which is positive…I start feeling awful again…then I realise I’m on a chronic relapsing path…bizarrely official NHS Wales policy is that there should not be LongCovid clinics…report comes back in 2 days that I have blood clots in two of the large veins in my brain…Totally shocked, stunned, frightened almost beyond belief at the thought of what this could have done.”

“I am 47 currently employed but not working due to illness…tested positive for COVID Boxing Day 2020. I was not hospitalised to begin with…I was diagnosed with Long Covid which had left me with tachycardia heart, 2 blood clots, pneumonia scarring in lungs…the specialist really can’t figure out why I have been left like this…I have gone from a very healthy person…to now not being able to walk down the stairs without sounding like I smoke 100 a day and just run a marathon.”

“I tested positive for covid on 1st December 2020…I am 45, normally in excellent health and keep fit and active. I was unable to do the most simple of activities such as cook a meal or walk even a short distance. The mental toll on being so unwell was huge. Fortunately I was one of the lucky ones given the Moderna vaccine. My fatigue lifted overnight and the rest of my symptoms cleared within a week. I feel like I have been given my life back.”

“We were victims of the first wave catching covid in March 2020..the lingering effects have been soul destroying and have never left myself and my girls aged 10 and 11. Fifteen months on my 10 year old is still suffering from ongoing fevers, fatigue and breathlessness. She had gone from being the most physically active child with numerous sporting activities to getting so out of breathe, exhausted and turning a bright share of red through any exertion. Not only the physical effects but the mental impact of not being able to do what she used to has been soul destroying for her.”

“…age 16…I’ve been referred to a long covid clinic as I’m still not better..only to be told I’m too young to be put on the program…I’m not doing a low histamine diet (as well as trying everything else) which has given me a bit more control over my hands, all from mine and my parents own research…It just feels so unfair I can’t get medical help…Before covid I danced and worked out 5 times a week, did a full week of school…now I’m lucky if I can do 3 days at school a week and missing out on lots as I’m only 16…I just feel so ill everyday.”

“…Symptoms are worse than the initial symptoms…I get fatigue, muscle pain. Deep bone ache. Migraines. Breathlessness. Chest pain. Chest pressure. Palpitations, dizzyness, neck ache, rashes, fuzzy vision, body vibrations, tinitus. Bloating, diarrhea, nausea, constipation. Pins and needles. Numbness. Weird neurological stuff…I have tried to get my fitness levels back up a few times. But every time I get so far I get a relapse. Prior to covid I walked 10,000 steps a day. I ran and did dance and yoga classes weekly.”

“He scoffed at me and said: we are a covid ward here and we don’t know anything about this *waves hand* “long covid”.”

“I’m a doctor who caught covid in our 2nd wave in Oct 2020…I felt pretty ill for a week but nothing serious & as my days of isolation were up, I headed back to the frontline…I honestly thought I was dying of a heart condition…I’ve had a heart MRI & I’m on beta blockers, waiting for follow up…The NHS needs us more than ever but so many healthcare workers are long haulers. Much of the medical community doesn’t know about long covid. I’ve heard ignorant remarks. I also want the government to count long covid!”

“I’m 21 years old…I trained for powerlifting five times per week..my initial symptoms with covid were relatively mild…within a day, I slipped immediately into depression and crippling insomnia. The depression is very much not like me. I was extremely happy with myself..fast forward six months and I’m here. Overall, I’ve actually become worse over time…I struggle walking more than 30 minutes at a time without incurring some form of PEM.”

“I’m 22...I was previously fit and healthy, would go for long walks with my dog, now I can’t go far at all. I was a nursery assistant but since catching covid I’ve been unable to do my job…My whole life has been turned upside which has affected my mental health majorly.”

“I used to walk 13 miles a day but now I’m bed ridden due to the pain 24/7. I worked in a forrest doing conservation work…no pre-existing conditions, mild infection. Dr’s kept telling me this was anxiety..It feels like I’ve died but am forced to watch the rest of the world move on.”

“I’m 23 years old..had long covid since 28th June 2020.. I now can’t walk independently without 2 crutches, I am incredibly fatigued, I have heart failure..medics don’t know what to do..I struggle to see a life worth living.”

“I was a triathlete..a marathon runner…after contracting a mild case of Covid in March 2020, I suffered chest pains (at one point I called 999 thinking I was having a heart attack), heart palpitations, mental fog, sharp stabbing heart pains, chest pressure..I am still unable to run, 15 months later.”

“Writing to you as a fellow long hauler with identical symptoms to yours. Got so desperate that I ordered Ivermectin, a drug which many people in Survivor Corps (FB group) reported helped them — within literally hours chest pains greatly subsided, HR came down SUBSTANTIALLY and after a week I could walk down the street again.”

“I’m 28, no pre-existing conditions, was athletic..cycled to work everyday prior to catching covid last March. Since then, I have been bed-bound disabled and unable to work for 3 months..”

“…I very much hope to be referred and with the help of your and others’ stories, hoping i will be taken seriously now.”

“My now 12 year has been suffering horrific symptoms since September. He caught covid in school within 8 days of returning. He was been hospitalised, now needs to use a wheelchair. He hasn’t returned to school since. He was a fit football and rugby player who never sat still, he has been pretty much bedridden for 7 months.”

“I was 30 when I got Covid in Oct…I had mild illness with 2 weeks off & started recovering, then a relapse rollar coaster…Remaining symptoms are fatigue like struggling to leave the house or lift my arms to hang laundry, breathlessness even while resting which makes talking difficult, cognitive issues like memory & concentration, heart palpitations, &purple covid toes…The Royal Brompton have been excellent, we’re investigating possible mini blood clots on the lungs. I want people to know that it’s not just death or recovery outcomes, there are a lot of young healthy people with long term issues.”

“I haven’t been able to work for over 6 months..my short term memory is affected..I struggled to talk on zoom meetings as I’d get out of breath and a heavy tightening in my chest.”

Consent has been given by every long covid warrior to share their story and identity for this project.

If you are suffering with Long Covid (or you’re looking after someone with the condition), please join the Long Covid Support Facebook group, Body Politic Slack group and Long Covid Kids Facebook group (for any parents who’s child has been affected).