ALMOST FIVE YEARS since the onset of the Covid-19 pandemic that brought much of the world to a halt, some people are still suffering the lingering effects of the virus in the form of Long Covid. 

We asked our readers to share their experiences of the condition and received a large number of responses from people of a wide range of ages. 

Long Covid is defined by the World Health Organization as the continuation or development of new symptoms three months after initial Covid-19 infection, with these symptoms lasting for at least two months with no other explanation. 

Readers told us of suffering shortness of breath, fatigue, brain fog, the inability to exercise or even do basic household tasks, cardiac issues and the loss of their senses of taste and smell.

In many cases, readers with Long Covid said their condition has had detrimental and even devastating effects on their daily lives, on their social lives and on their mental health. 

Some have been forced to retire or change profession while others require full-time care from loved ones. 

Many people expressed disappointment and frustration at their experience with the healthcare system, including HSE Long Covid clinics. They complained about a lack of recognition, treatment and support for their condition. These included readers who work or worked in healthcare.

In a response to The Journal, the HSE pointed to its website on managing the known symptoms. It also said that while there is “no single treatment” for Long Covid, there are “things you can do to help manage your symptoms and make everyday activities easier”. 

“We know that many people experiencing Long Covid are managed by GPs through general assessment, advice, education and self-management supports,” Dr. Siobhán Ní Bhriain, HSE national clinical director integrated care said. 

“For some people however, further assessment and additional supports are required which may include referral to respiratory or other specialty hospital services or to one of the Long Covid clinics which have been established in each HSE Health Region for patients experiencing symptoms.”

Our thanks to everyone who got in touch. Here is what some of our readers told us.

Paul Burke 

Paul Burke contracted Covid in November 2021 and spent several months in hospital, including two months in intensive care.

“I have been left still requiring oxygen and with several symptoms of Long Covid,” he said.

“The first and most debilitating is the fatigue. Before getting Covid, I was reasonably healthy, although immunocompromised, and had recently retired with lots of plans for the future.

“I now find myself with little or no energy most of the time which can, and often does, leave me unable to do even the most basic of things.

“The second most debilitating symptom is having contracted sleep apnoea as a result of Covid. This requires being hooked up to a CPAP machine every night. As you can imagine, this is not the most comfortable way to have to try to sleep.

“The third symptom that I have experienced is the brain fog. I can be in the middle of a conversation with someone and suddenly forget what I was saying. I also find it very difficult to remember names since Covid.”

When it comes to treatment and follow-ups, “these are seriously lacking,” Paul said.

“It is now three years since I had Covid and almost two-and-a-half years since I was discharged from hospital. In that time I think I have had two follow-up appointments and one of those was a five-minute telephone consultation.

“Given that I spent two months in intensive care and still require oxygen along with the other symptoms that I have mentioned above, I feel that at this stage nobody fully understands what it is like to be left like this.

Other than my GP trying his best, I don’t think anybody cares about those left with Long Covid.” 

Anonymous 

A nurse who worked in a Dublin hospital, and wished to remain anonymous, said they contracted Covid while treating patients who had the virus in 2020.

The reader said they are still too unwell to work due to Long Covid. 

“I have cardiac issues, brain fog, fatigue and pain. 

My life lacks all spontaneity.” 

“Everything has to be planned based on my energy levels. I need to have a rest most days. I am mainly housebound due to my energy. People think they are tired but this fatigue is on a whole other level, it’s unimaginable. 

“I have to sit down for a few minutes after only emptying the dishwasher. I am only in my 30s. Any infection I get completely knocks me for six.

“The HSE haven’t updated their model of care. The public Long Covid clinic I attend has tried to discharge me twice even though I’m not well enough to work. 

“I feel like Dr Jack Lambert in the Mater is the only doctor that listens and understands. 

“Without my private insurance I’d be left on my own. People act like Covid is over and done with, including the HSE and government. I was a young, fit woman before this. There are studies that Covid affects your immune system, is that why there are record numbers of flu and RSV at the moment? 

“I wish I was better. I want to be well and be able to work. I miss the social aspects and helping to make people better. However, at this point, I’m more of a liability. 

“What if I made a medication error due to brain fog? What if my patient went into cardiac arrest? I wouldn’t be able to do chest compressions. 

“This is no way to live. But I know of other people with Long Covid who are bed bound, have had strokes, unsupportive partners etc.”

Paul McKenzie

Paul McKenzie said that contracting Covid triggered a number of health issues that have impacted his immune system, as well as causing chrronic muscular pain and fatigue.

He said these flare up regularly, affecting his eyesight, mobility and agility.

“I am now on disability,” he said, but he has also had to return to work in order to pay his mortgage.  

“I used my savings to support the difference and pay additional bills. I could no longer afford to live off the disability allowance.”

Prior to Covid, Paul worked in education but his illness meant he could not return to work, so he had to change career. 

“I did a masters in UCD while I was on disability which got me into a line of work that thankfully allows me to work predominantly from home.”

He said he has come out the other side of it but, “I still have all the symptoms and live with this condition”.

“That said, I realise the importance of keeping positive and engaging with as many gentle activities as possible. Yoga and swimming are amazing for my physical [and] mental health.”

Sinéad Nic Shiacáis, from Limerick

Sinéad Nic Shiacáis said she used to be a very active person but that has changed completely. 

“Living with Long Covid feels like being trapped in a body that no longer remembers who you are.

“Before this, I was an outdoor educator and swimming instructor, climbing mountains and helping others connect with nature. Now, climbing a flight of stairs leaves me breathless.

The vibrant, capable person I used to be feels like a distant memory.”

Sinéad said she has had Covid three times and was vaccinated.

“The second time was so severe that I nearly ended up in hospital. Over a year later, I’m still navigating life with constant fatigue, brain fog, and a body that doesn’t work the way it used to.

“I waited over a year to see a specialist at a Long Covid clinic, only to have my appointment cancelled a week ago when the consultant left UHL in Limerick for Dublin.

“My GP can’t offer treatment, and it’s clear the system wasn’t built to support people like me.”

Sinéad said she has faced serious health challenges throughout her life. 

“Yet, without a shadow of a doubt, Long Covid has been the most scared I have ever been. To lose control over your body, to feel it fail you in ways you don’t fully understand, has deeply affected my mental health.” 

She said she has been out of work since June.

“Fatigue and memory loss make holding down a full-time job impossible. Workplaces aren’t set up to accommodate people with Long Covid, and there’s little understanding of what we’re going through or what supports there are to provide. 

“It’s isolating, watching the world move on while you’re left behind, battling symptoms that feel endless.”

Sinéad said that what is most disheartening is “how invisible this struggle feels”. 

“The lack of compassion and understanding from society is overwhelming at times. It’s hard not to wonder if anyone will take the time to read articles like this to fully grasp the toll Long Covid takes on people’s lives. But this story… and countless others… deserves to be heard.”

Eibhlis Burke, from Tipperary 

Eibhlis, who has suffered with Long Covid for three years, also spoke about how her condition is not immediately apparent to others. 

“I have no taste or smell. I’ve being diagnosed with asthma and suffer from fatigue and brain fog.”

She is a patient in the Long Covid Clinic in Limerick, where she said she has been helped with fatigue by a physiotherapist. 

“My Long Covid is a hidden illness, so I look like I’m ok but I’ve an illness and it impacts my life.” 

Anonymous 

One anonymous reader said they were having trouble getting their health issues recognised at work. 

I am not getting the appropriate supports and I wouldn’t know what to ask for or who to ask.

“I sometimes wear a mask to try to help but I have been screamed and shouted at by strangers on the street and I am anxious about it. 

“I have not come out the other side of it despite it being over two-and-a-half years.”

Paul (61) 

Paul told The Journal he got a bad dose of Covid in June 2022, followed only four weeks later by a second dose, which was milder. He said he was fully vaccinated at the time. 

“I was constantly exhausted and all I wanted to do was sleep, at least one hour per day in the afternoon. 

“This continued over winter 2022-2023 and on into the summer 2023, maybe sleeping less during the day than before, but still struggling to do normal things, and running out of energy quickly. 

“At this stage, I am probably running at 90% of pre-Covid energy capacity, but any time I am unwell, it takes me weeks to recover. Sleep is always appealing.

“I’ve definitely had to change my perception of how much (or little) I could do, which is a bit depressing. Prior to the double dose, I had been doing daily Pilates classes online which helped during lockdown.”

He has not done Pilates since then, saying “I don’t have the energy for it”.

“I have probably had Covid four times by this stage, and each time, it knocks me back.

“Covid has definitely hit me hard, and has had a depressing effect on me, mentally and physically, struggling through a day, rather than bouncing through it. 

It ages you more quickly than you should age.

“I’m not getting any treatment for this. I am not sure what treatment could do for me. 

“In the old days, the GP would say, “Buck yourself up”. Hard to know where to go for help.”

Anonymous

One reader was referred to hospital by their GP, only to be told to go home. 

“I caught Covid in March 2020 and was in bed for three weeks,” they said.

The level of concentration required to breathe was terrifying.”

“Covid caused permanent heart damage and I am on medication for this. It damaged my throat and lungs. I have insomnia and brain fog. I was unable to stay in my job as it was too strenuous.

“My doctor was great. I was referred to hospital with tachycardia (the medical term for a heart rate over 100 beats a minute). No tests were done other than an EKG (a test of the heart’s rhythm).”

The reader said they were sent home from the hospital “feeling like an idiot”, only to return in an ambulance a few days later. 

They said their recovery is ongoing but that flare-ups occur.

“I work in a sedentary occupation and miss the level of activity I once had.”

Anonymous

One reader who caught Covid in March 2020 didn’t feel Long Covid symptoms until a few months later, when they tested negative for the virus. 

“My body was completely depleted. I had no energy, weakness in my limbs, difficulty breathing, constant heart palpitations. Small tasks like cooking dinner or putting on some washing were wiping me out. Several times I collapsed while out walking the dog, my body just gave out after a couple of kilometres. 

Prior to Covid I was energetic and fit, loved my gym sessions and loved being out in nature.

“I had about 18 months of incapacitation before I started to see a small improvement. 

“I had a lot of medical tests done but there was nothing that explained the Long Covid symptoms. I attended a Long Covid clinic in the Beacon and while the staff were great, there really weren’t many options for treatment other than to rest when I had a relapse of symptoms. 

“I tried a functional medicine approach, diet changes, slowly ramping up exercise, different medications that were rumoured to help the symptoms. 

“I had another relapse in the last couple of months and had to take time off work again. 

“My immune system just can’t fight off infections in the way it used to and my body can’t tolerate stress without it wiping me out.  

“I’ve been back to the doctor multiple times and, while my type of story is well known to them, the doctors admit there’s not a lot they can do and that the testing we have is not designed to uncover what’s causing Long Covid. 

My options now are to look for another specialist clinic abroad.” 

“It’s coming up to five years of dealing with this. I miss my old life and I’m worried about what the longer term impact of Long Covid is going to be as I get older.” 

Anne

Anne said she contracted Covid a number of times but one case in June 2023 left her with symptoms of Long Covid.

Anne said she experienced periods in which her heart rate would suddenly increase for no apparent reason. 

She experienced palpitations, chest pains, POTS (Postural orthostatic tachycardia syndrome), fatigue, and a reduced tolerance for exercise. She has also lost weight and suffers from anxiety. 

Despite this, she carried on working.

I feel when you tell people you have Long Covid they look at you like you’re making it up”.

“I was offered medication for my heart rate but to be honest the side effects sounded just as bad as Long Covid so I just carried on.

“Long Covid is very debilitating and I feel the only people who have ever understood me are people who have first-hand experience of it.

“It’s a scary virus, the way it continues to impact young, fit, normally healthy people.”

Bobbie Callaghan, a social care worker from Kildare

Bobbie Callaghan also told The Journal about how he’s gone from being active to needing to spend hours resting to stave off exhaustion.  

“I sometimes lose hope that I will ever recover fully. I have always been a hard worker, so pacing myself is difficult for me to accept. 

“Most days I spend hours just lying on the sofa because I am too tired or so I have some energy to do a small amount of chores. If I do anything extra, like go out for lunch, I know I will have a relapse. 

“I have tried so many treatments, medications and therapies and some help a little but I am still trying to accommodate this illness instead of living my life. 

“I am unable to return to work as I continue to have debilitating symptoms and with this comes the uncertainty I feel about my future health and finances. 

“I am disappointed with the support from the health service and the way they have played down the impact of long covid on patients.” 

Anonymous healthcare professional

A healthcare professional who caught Covid in work in Spring 2020, “when we did not have adequate infection control protections”, said they have never recovered.

“I was previously healthy and now am severely disabled and housebound. I’ve lost my career that I loved and studied hard for.  

“I’m rarely well enough to meet friends. It has been a lonely, isolating illness because I’ve often been too unwell to even have a conversation with family around me. 

“The contrast between how seriously unwell I was the first few years and the distinct medical ambivalence was really incredible to me. The public Long Covid Clinic was extremely poor. 

“Incredible to say, I saw a doctor there who did not know what Long Covid was. This was several years in, at a clinic that is funded by the government to provide care for people with Long Covid. I found it appalling. 

“I feel more traumatised by medical gaslighting and indifference over the past few years than from being so severely unwell, and that is saying something.

“If your health condition doesn’t appear on the shortlist of known conditions, basically it’s very unlikely that you will find a doctor who has any interest in helping you.

“My GP has yet to learn or read anything about Long Covid, going into the sixth year of this. 

“There is no political will to deal with an ongoing pandemic that people want to forget or deny. We are at a similar stage to the cholera/clean water paradigm shift of several generations ago; we are in the early phases of the “clean air” shift but it needs government, institutions, schools and workplaces to make it a reality.

“It took over 100 years for full buy-in of society regarding clean water. Will it take 100 years for clean air?”

HSE Response

Dr. Siobhán Ní Bhriain told The Journal that the Long Covid clinics – set up as part of the HSE’s interim model of care – provide follow-up care and support for patients experiencing persistent symptoms of Covid-19.

“In December 2022, HIQA published an international review of clinical guidelines and the model of care for Long Covid and found that the approaches and recommendations in the Irish interim model of care were broadly consistent with those found in the international literature,” she said. 

The interim model of care will be reviewed this year.