Eight reasons why I’m sharing my Long Covid horror story
We have entered another health crisis but the Government isn’t telling anyone
#1: To educate people about what Long Covid actually is
Long Covid is the long term effect of Covid-19 (12 weeks plus), yet ‘new symptoms’ emerge across multiple organs that people don’t even experience with Covid-19. Long Covid sufferers, known as ‘long haulers’ experience unexplainable new symptoms, relapses and the complete rewiring of our previously normal health.
You find yourself unable to do what you did before, sometimes there’s a diagnosis and sometimes there’s not, alongside extremely unexpected relapses which adds a whole different layer of debilitation to recovery, leaving you starting from square one again.
Here’s a brief history of Long Covid:
I experienced a moderate-severe case of Covid-19 on the 14th March 2020. The virus hit us badly in London, and many of the long haulers in the groups are still from that period. There was something very strange about the March strain; many of us experienced similar ‘waves of symptoms’ with nearly identical timelines, i.e big relapses after two/three months and around nine months. We couldn’t be seen in hospital because we didn’t have a ‘continuous fever or cough’, so that meant we couldn’t get tested.
We felt like we were getting better, then BAM, out of nowhere the symptoms returned (the beginning of a pattern that would repeat itself over the course of ten months). I kept going back to my GP to tell them that I wasn’t right and that I couldn’t even walk for five minutes; they said “it’s likely that you have anxiety”. What gave me anxiety was them telling me that I had anxiety and not believing me!
A few months later and the support groups on Facebook exploded, with thousands all reporting the same thing: “I’m really unwell and my GP keeps telling me that I have anxiety, they just don’t believe me.” One support group saw 80,000 people from across the world, repeating a similar analogy: “walking 100m feels like I’ve run a 10k, I’m so short of breath”. It was overwhelming.
Thanks to social media, it started to get the attention of the medical community and the media. They soon realised that there was another debilitating pandemic; the after effects of Covid-19.
I fought against medical gas lighting for eight months, as did many others and some are still experiencing it now. It was psychologically torturing. This impacted our mental health enormously, on top of experiencing such debilitating symptoms.
Even Doctors who were experiencing Long Covid were not believed.
Eventually I was told that “currently the medical system did not know how to treat patients with Long Covid because it’s so new”.
In October 2020, Long Covid was formally recognised in the UK as a separate condition and given medical guidelines for diagnosis.
NHS England recognised that the NHS didn’t have the capacity or resources to treat long haulers. We needed a patient centred holistic approach to recovery, i.e nutritionists, respiratory specialists and cardiologists, occupational therapists and pulmonary rehabilitation teams all working together.
In December 2020, NHS England announced a £10 million pound fund to set up Long Covid clinics, with 69 set to open. However many long haulers still can’t get access them and the majority are not running yet.
The reality of being seen in a clinic is this: I was rejected from what was the only Long Covid in London at the time because I lived in ‘South London’ rather than ‘North London’. This is a clinic that I found online; my GP’s had not been ‘informed by the CCG’, therefore didn’t have the authority to refer patients. Unfortunately, this is something that long haulers and GP’s are still reporting. I am the first Long Covid patient at Guy & St Thomas’ hospital, however they recently told me that they aren’t able to open for months due to the current Covid-19 wave and they do not have the current resources to set up the clinic. Factors such as the current capacity of the hospital, geographical location and whether GP’s have the authority to refer to a particular constituency affects who can ‘get in’.
That said, the UK has acted quicker to help long haulers than countries such as America or France, who currently do not have a system to prepare for the consequential chronic overload from Covid-19.
The only way that I’ve been able to get the help that I need is by tracking down a private specialist who was experienced in treating patients with Long Covid, (which, at the time, there wasn’t any). As you can imagine, it’s been a tremendously exhausting fight and one which the majority of long haulers have experienced.
Unless people have private health insurance, the road to treatment and recovery is extremely delayed, subjective and inefficient. Even then, private specialists don’t have the answers, as we’re still in the ‘science/research phase’ of the condition. Unfortunately, not everyone can afford private health insurance which means that lower income sufferers may experience a longer delay to receive treatment.
Now, experts all over the world are conducting enormous amounts of research and studies to find out why Long Covid exists and why some of us get it and others don’t.
There are many theories, which researchers are studying right now. One theory is that the virus is still circulating in our brains or other organs (similar to how the chicken pox virus lives in our spine and when activated, turns into shingles for some people later on in life). Another theory is that it’s an auto immune response similar to ME/CFS (long haulers display very similar symptoms), some think that the immune system is in a ‘hyperactive state’ from battling Covid-19 and it’s taking a long time to regulate itself, and another is why the mitochondria doesn’t replenish as it should (the powerhouse of our cells don’t recharge).
Long Covid is affecting a large number of young people, especially women, who were not hospitalised and many of whom were previously fit and healthy; athletes and professional footballers (Olympic athletes even). This is another reason why doctors are so perplexed.
Professor Danny Altmann, an immunologist at Imperial College London, said it was a “chapter of the medical textbooks that hasn’t yet been written and it needs to be”.
#2: For Long Covid to be recognised and treated as severely as Covid-19, starting with a formal register
I simply cannot believe that there’s an incredibly fast growing world of otherwise previously healthy people like myself, left debilitated from Covid-19 (ten months later), and the public hardly knows about it.
People are misled into thinking ‘old people get it badly, young people get it mildly and a few are left feeling tired afterwards’. It couldn’t be further from the truth. Those getting it ‘mildly’ are left severely debilitated for many months on end and others are left with organ damage. I should know, I had ‘moderate/severe’ Covid last March, and in a few weeks I’ll be finding out if I have hidden lung damage.
It is predicted that ‘1 in 10 people’ will experience Long Covid but like everything else about this virus, we still don’t know the actual numbers. Astoundingly, there’s no formal register to keep track of us so we don’t know how much of the population is suffering the long term affects. The country is trying to deal with the current Covid-19 emergency but no one is prepared for an entire sea of the population to become debilitated after having Covid. We need to have a formal register of Long Covid sufferers ASAP, to assess and prepare for the full extent of this pandemic, which MP’s such as Layla Moran are campaigning for.
We’re tracking positive tests and the death toll, so why aren’t we tracking the ‘estimated’ 500,000+ people that have been left with long term debilitating effects, like me?
Dr Nisreen Alwan, a doctor, professor and long hauler, suggested that if 10% of Covid sufferers develop long term symptoms, that could be 40,000 people from the past week alone. Sadly, many other NHS workers are and will become long haulers and they should be given compensation for risking their lives on the front line.
We are dealing with a virus that a top respiratory specialist told me “defies respiratory medicine”. As a result, the ‘normal way’ of treating patients doesn’t work and an individual patient centred holistic approach is needed, because no long hauler is the same. This is needed well before the long wait of trying to get into a Long Covid clinic, but from the first time individual’s contact their GP.
GP’s need more support, information and resources to help long haulers.
Imagine you feel a fireball moving in your lungs, stopping you from walking and specialists run all the tests and tell you that you’re completely fine. What do you do then? Where do you go?
It’s an overwhelming and illogical maze to navigate for the sufferer and for medical professionals because a lot of the time ‘blood tests, ECG’s and X-ray results look normal’ (like mine have throughout this time), which doesn’t warrant further referrals based on ‘the normal medical textbook process’. For many, all there is, is anecdotal evidence.
Scientific research and holistic healing are the answers to treating Long Covid. Both need financial support from the Government.
Like many long haulers, I’ve been researching the effects of Covid-19 for the past ten months, gathering information from my specialists and professors and witnessing the enormity growing in the online support groups. We have entered another health crisis and the public are completely unaware.
The severity of Long Covid is deeply overlooked by both the Government and the media and awareness needs to be communicated to the public, fast.
#3: To get more help
I’m desperately writing to various professors, doctors, politicians and scientists to become part of their Long Covid research trials, find more answers and get the best possible help that I can to recover. Something is still VERY wrong with my lungs; I relapsed nine months later after just a slow walk and it took me a month to be able to walk for ten minutes. I’m back at square one again; unable to bend over to do yoga, walk or talk for long or exercise. It’s a case of testing how much I can do and building it up (again).
For my own sanity, I need to get to the bottom of this debilitating phenomenon which has robbed me of my normal life.
We know now that Covid-19 changed a part of my brain; the medulla, which created ‘a dysfunctional breathing pattern’ and changed my CO2 levels. I’m currently having respiratory physiotherapy from Air Physiotherapy (the same treatment given to people who have lung disease). It’s been a game changer but I’m still nowhere near to ‘normal activity levels’.
I can’t help but feel that something else is happening, given the huge array of other symptoms that I’ve experienced with Long Covid. If COVID rewired my breathing from my brain, what else has it rewired?
On the 12th February, I’ll know whether I have hidden lung damage or another lung issue. It’s strange to say, and only long haulers will understand this, but I almost ‘need’ something to show up on my results to explain this nightmarish phenomenon, and of course, for that something to be treatable. Otherwise, I’m back to the drawing board of trying to get into specialist clinics to find out what’s going on because, as much as I tell myself I’m getting better, my lungs are not.
If the virus is still circulating in my brain, like some scientists think, I will not stop until I’ve had every possible brain scan that I can get. Hopefully, that’s not the case.
Now, we’re finding out that lung damage caused by Covid-19 doesn’t always show up on regular X-rays or CT scans (can this GET any crazier, I know). Sheffield and Oxford Universities have developed new technology to detect hidden permanent lung damage in patients who had Covid-19 pneumonia. I’m trying to get into their study but as we couldn’t be seen in hospital right at the beginning of the pandemic, we don’t have ‘clinical evidence’ of having Covid-19 pneumonia. My specialists say it’s “extremely likely” that I had experienced Covid-19 pneumonia, given that my current symptoms are reflective of patients that were diagnosed. The fight to find answers continues.
As I’m a health coach, I’m very consciously aware of my mind, body and energy and I have in depth symptom diaries of all my symptoms, which has helped with research.
Researchers out there are looking for people like me and I’m looking for them. Hopefully, this blog makes it’s easier to ‘share my story’ with them.
#4: To raise awareness of the mental health impact of Long Covid (brace yourself for the article below)
This is not just a Coronavirus pandemic that we’re in, this is a mental health pandemic on levels that we’re not even aware of yet.
Brace yourself: this article succinctly pulls together the research, professional opinions and studies that I’ve been gathering to find out how Covid-19 affects the brain.
Mental health issues are a huge symptom of Long Covid. For many, it’s a bi-product of having to deal with such a debilitating and unexplainable chronic illness and not knowing where to turn when doctors can’t help you. However, studies are now showing that Covid-19 neurologically rewires pathways, effectively ‘creating cognitive impairment, anxiety and depression’, which is why many otherwise positive, resilient people with no prior mental health illnesses are now suffering from mental health issues that they don’t understand. This is an area being investigated at Kings College Long Covid Neurology clinic.
Back in March, I experienced such severe brain fog that it took me three hours to write a five minute email and I just couldn’t understand why. Thankfully, I don’t have brain fog anymore but unfortunately many long haulers still have significant cognitive impairment, to the point where they cannot work.
There’s mathematicians who can’t add up anymore and journalists who can no longer write. Real stories from the support groups but no one would know this, unless you’re in them.
Throughout my entire life, I’ve had a ‘talent’ for falling asleep in minutes. I can go to sleep anywhere, yet now I suffer from insomnia. I’m treating it with Ayurveda and naturopathy and it’s lessening but again, it’s another ‘random’ symptom that emerged seven months into Long Covid. A symptom, my specialist told me that he’s seeing around the six/seven month mark, which many patients encounter.
I practice, study and teach meditation, so I’ve learnt how to disassociate from my thoughts and emotions.
A few months after experiencing Covid-19, I started to experience an ‘avalanche of negative thoughts’, perplexingly at a time when I felt mentally strong, positive and resilient. At first, I just observed and thought, perhaps it’s my frustration from being so debilitated, as I’m a highly active person. However, my gut instinct was that it was more.
At first, I couldn’t ‘reframe’ or ‘change’ these overwhelming ‘negative and hopeless thoughts’. I was baffled. And so I began to research.
Dare I say it, in ‘spiritual terms’, it felt like the virus had it’s own consciousness. I felt like I was turning into a different person. I didn’t tell any doctors because they would have definitely stamped me with a ‘psychiatric looney’ label. Yet, why were the thousands upon thousands of long haulers all reporting the same thing in the support groups? An Olympic Rower, Oonagh Cousins, reported similar symptoms of ‘spiralling negative thoughts’.
I’m a pretty strong headed person with what I’d like to call a high level of emotional resilience, which I’ve developed over the years. However, experiencing the traumatic episode of Covid-19, ten months of up and down debilitated lungs, unexpected ‘tornado’ sensations moving in my lungs and making me feel like I was dying, plus the medical gas lighting, drove me to the brink of a despair that I hadn’t experienced before.
It just didn’t make any SENSE. My lungs were feeling better and my physical activity level was on the up. The relapse in November was the last straw.
As a result, I was diagnosed with ‘Long Covid related moderate depression, mild anxiety and PTSD’. Pre-Covid, I didn’t experience any of these. I’m still quite proud of the ‘mild’ and ‘moderate’ part, given the circumstances.
So, are they a bi-product from the symptoms of Long Covid or a symptom itself? I’ve observed that the PTSD is an instant reaction from the relapses, the anxiety is a bi-product of living like I’m on a minefield with my lungs and my gut feeling is that the depression is both.
Interestingly, my cortisol level was tested three times throughout the year and came back as ‘normal’.
Working on healing our mental health is a key area to speed up the recovery from Long Covid. When we’re anxious, our body activates the ‘fight or flight mode’ yet healing can only occur in our ‘rest and repair’ mode: the parasympathetic nervous system.
This is why creating a tailored mental health management plan is key to healing; to cathartically heal and work through PTSD, anxiety and depression through creating a purposeful self care and self love routine, finding holistic therapists that work for the individual and having a stress free environment to focus on long term healing.
Now that Long Covid has been established, nobody should have to experience medical gas lighting again, yet unfortunately many are still reporting that they are.
Unless you’ve experienced Long Covid, no one can really understand it, making it a very lonely journey. Many of us look ‘fine from the outside’, yet we are very debilitated. That’s why having a compassionate support network and professional therapy to heal from the trauma of Covid-19 is vital for our healing.
Mental health is considered a secondary treatment yet management is fundamental to long haulers healing along with having compassionate and supportive medical help.
#5: To shed some light for other long haulers
To anyone suffering the after effects of Covid-19 — it is not ‘in your head’ and please do not allow ANYONE to make you think so. Unfortunately, many more people will experience Long Covid and they won’t know it until they ‘still don’t feel well three months after having Covid-19’. Hopefully you have a proactive and supportive GP but additionally, there are a range of medical specialists and holistic practitioners that you can book in with online to help you. My biggest help has come from actively seeking out the right specialist and from swapping notes in the online support groups.
There was no one ‘before us’ that I could compare my symptoms to so hopefully my blog can help other long haulers on their journey.
#6: To share research + how to manage and treat Long Covid symptoms
You can only heal if you get the right help. As a holistic practitioner, I’ve had many tools to help myself but I wouldn’t be where I am without the amazing help from a variety of specialists that I know and new ones that I’ve found. I experienced so many new symptoms with Long Covid but the majority were healed by my Ayurvedic doctor at The Ayurvedic Clinic, (where I studied), such as extreme fatigue, G.I and bowel issues and loss of appetite.
My biggest and most debilitating issue has been my lungs. It has taken me ten gruelling months to find a lung/chest specialist that had experience with treating Long Covid (because it’s so new). Thankfully, I’m now being treated by the brilliant Dr William Man, a Consultant Chest Physician who runs Royal Brompton’s Covid-19 respiratory clinic; one of the leading cardiorespiratory hospitals in Europe.
I also want to share the latest insights from researchers that’s being circulated in the support groups because so many sufferers are seeing progress with these treatments. However, like everything, it will probably take a year for the ‘system’ to ‘give it the green light’ to be made public. Meanwhile, we cannot afford to ‘wait’, sitting at home, whilst we’re unable to walk and work.
There’s a fundamental systematic disconnection between scientific researchers and how GP’s and specialists are treating long haulers. Breakthroughs in research is life changing for some long haulers but there’s no central body to filter these insights to GP’s and specialists.
Progress isn’t linear for most long haulers. That’s why creating a symptom tracker and management plan is the key to finding patterns and triggers, helping your doctor to track your progress and ensuring that you are optimising your self care to give yourself the best chance of healing as quickly as possible.
As many of us are still suffering the effects of Covid-19 ten months later, medical professionals are observing ‘what happens to us’ and if this turns into a longer lasting condition, such a ME/CFS/POTS (conditions which also have no confirmed explanations) or something else.
We’re involved in various Long Covid research studies or a better way to put it is, ‘we are the research’.
I have tried and tested holistic remedies, coping strategies and recommended specialists that I want to help other long haulers to access.
#7: Because it’s exhausting trying to describe this all, over and over again
When people ask me ‘if I’m feeling better’ or ‘what does Long Covid feel like’, I honestly don’t know how to describe the enormity of the rollercoaster and unexplainable lung debilitation that I’ve been experiencing, since March 14th 2020. Trying to make sense of something that makes no logical sense, on top of trying to explain that to anyone else who hadn’t experienced it, was virtually impossible.
At times I couldn’t speak, other times I seemed fine and now, I have to talk less otherwise my chest becomes tight and I feel short of breath. On November 22nd, I experienced what was probably my biggest relapse and each time I speak about it, I relive it all over again and the trauma resurfaces. I realised it wasn’t good for me to keep talking about it, especially whilst I was experiencing PTSD; I needed another way to share what I was going through. So when people ask me ‘how I am’, they can read my blog and instantly contextualise, allowing us to connect, without me delving into such painful memories that I’m trying to heal from.
Writing has been a deeply cathartic source of healing for me and a way for my family, friends and anyone else I know, to gain a deeper understanding of what I’m going through and the phenomena of Long Covid.
#8: To wake up the sceptics
Some people think that Covid-19 is a ‘hoax’, or that it’s ‘flu like symptoms’ that only really affects older people. When you’ve hardly heard of anyone experiencing the virus, it’s very hard to be able to understand the true reality of this all, because your reality looks very different to mine and the reality of NHS workers seeing the impact on the front line. Truth is, I’d probably be sceptical to some degree too, if I hadn’t experienced the horror of it myself. Nothing about this virus makes sense. But I’m here to tell you what Covid-19 has done to me and the many thousands of other ‘young, fit and healthy’ people with no pre-existing illnesses. And no, I’m not being ‘paid by the Government to make up a story’ (some people actually believe this!?).
Be very careful what you choose to consume. Listen to real stories.
Please share this to raise awareness and to educate your family and friends.
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You can contact me on IG: @Jasminehayer_
