“I feel stuck in limbo” 3 women with long Covid on what it’s like to suffer ongoing symptoms

“I feel stuck in limbo” 3 women with long Covid on what it’s like to suffer ongoing symptoms

Written by Lauren Geall

As the vaccine rollout gets underway across the UK, many of us are looking forward to a life after the coronavirus pandemic. But for people dealing with long Covid – the term used to describe the effects of Covid-19 which last beyond the initial infection – the future is uncertain. Here, we talk to three women whose lives have been disrupted by the virus.

On the 1 February, it will have been 10 months since Sophie Evans first fell ill with Covid-19. On the day we speak, her temperature is 38.5°C – above the 37.8°C threshold commonly cited as a sign of coronavirus infection. She’s been dealing with consistently high temperatures – alongside a 24/7 headache, brain fog, nausea and fatigue – since her initial infection on 1 April 2020, but is yet to receive any real answer as to why.

“It’s mind-boggling,” the 28-year-old, who hasn’t been able to do her job as an NHS nurse and midwife since she first became unwell, tells Stylist.

“On paper, I am someone that is still showing persistent coronavirus symptoms, but my tests have been coming back negative since May. What happens with someone like myself? Do I get a test every day because my temperature is always so high? 38.5°C is not a normal temperature for someone to have, yet there’s very little support I can access going forward because of the lack of knowledge about this disease.”

Evans is one of the thousands of people in the UK dealing with the impact of long Covid – the term medical professionals are using to describe the effects of Covid-19 that last long beyond the initial illness. It’s an outcome of the pandemic which has been omitted from mainstream conversation until very recently (the first parliamentary debate into long Covid took place only last week). This is despite the fact that, according to the latest estimates from the Office Of National Statistics, 1 in 10 people who test positive for Covid-19 exhibit symptoms for 12 weeks or longer. 

In Evans’ case, those symptoms have been debilitating. The pain in her head hasn’t lifted since she first developed a headache – the very first sign something wasn’t quite right – on 1 April last year. In the first 12 weeks of her illness, the pain was so bad she says she thought she was going to die (“I’ve never been in that sort of pain in my entire life”). Now, she describes the pain as a permanent “four or five out of ten” on the pain score.

“Honestly, I struggle to find the words to describe my headaches,” she admits. “They’re not migraines – at points, the feeling was so catastrophic that I thought I was having some sort of haemorrhage in my head.

“It feels like someone is gripping my head with their fingers so intensely and deeply that they can’t squeeze anymore, and at the same time, I’ve been hit around the head by a shovel. No pain relief has helped at all – and I’ve tried a lot of drugs. The reality is that I’m stuck with a permanent headache which isn’t going away, and my doctor can’t actually offer me any answers except from the fact that it’s long Covid.”

The lack of answers is a frustration shared by thousands of long Covid patients across the country. Care pathways for patients dealing with the aftermath of Covid-19 remain undefined, and many people living with long Covid have been left feeling unsupported as a result. It’s a situation the NHS is quickly trying to remedy through the introduction of long Covid clinics, which are designed to support and care for people suffering with the aftermath of infection. 

31-year-old Amy Durant says she has been struggling to access support. After falling ill with Covid-19 in mid-March 2020, she has been struggling with ongoing issues including chest pains, breathlessness, dizziness and severe fatigue, with a CT scan since revealing the virus caused damage to her lungs. But because she wasn’t hospitalised with Covid-19 (although she did test positive via antibody testing in July), she’s been unable to access the clinic set up to support long Covid sufferers in her area.

“I was rejected from a post-Covid clinic in September, which was a real blow,” she explains. “They told me they would only see hospitalised patients, which seems really unfair – I’m now on two different daily inhalers because of the damage Covid-19 has done to my lungs, and the doctors can’t tell me if or when this damage will heal. I feel stuck in limbo, really.”

Like Evans, Durant has been left unable to work because of long Covid – she says her symptoms make it difficult to “work, read, paint, run or even walk for more than a few minutes”. And while she’s trying to remain hopeful that things will improve, she admits that staying positive is becoming a challenge.

“I’m naturally a positive ‘glass-half-full’ type of person, but I’m finding it increasingly difficult to remain that way with this illness when the symptoms are so relentless and I’m not seeing any consistent improvement. I’m really hoping to be somewhat back to full health on my ‘corona-versary’ in March, but I’m not confident that I will be.”

Understanding the mental health impact of long Covid alongside the ramifications for physical health will be crucial if health services are to properly support patients in the aftermath of the pandemic. It’s clear that a ‘one size fits all’ approach won’t work here – although we’re only just starting to understand the full extent of long Covid, the next step will be putting together a system which gives people the support they need at all stages of their recovery.

Dr Samantha Walker, the director of research and innovation at Asthma UK and the British Lung Foundation, whose post-Covid hub has been designed to provide support for people dealing with breathing difficulties after coronavirus, tells Stylist it’s important that people struggling with symptoms are listened to.

“Because this is potentially such a high volume of people, the NHS needs to be setting up the services to help people, so that when they ring their doctors they don’t just get met with ‘we don’t know’,” she says. 

“Talking to people who have come through our post-Covid hub, what they’ve said is that having somebody take them seriously or having somebody who actually says ‘OK, we need to do something about this, we need to work out what’s going on’ is really transformational for people.”

Hayley Forster knows how painful it can be to not be taken seriously. Last year, she was hospitalised with Covid-19 in early April and has been suffering with complications ever since, including chest pain, brain fog and debilitating fatigue. The 36-year-old’s list of symptoms fills an A4 piece of paper – “I feel like it’s had an effect on every system in my body” – but except from her initial treatment in hospital, she says she hasn’t been able to access any support.

“One doctor basically told me it was all in my head because I was so traumatised from getting Covid-19, and there was actually nothing wrong with me,” she explains. “But my body feels like concrete constantly and I feel like I’ve lost the quality of life that I once had – I don’t feel vibrant anymore, just heavy and groggy all the time.”

Forster continues: “I’ve just felt a bit useless and abandoned in a way. When the doctors don’t even know what’s wrong with you or how to improve you, it just adds another layer of anxiety to the worry you’re already feeling.”

The future remains uncertain for the people dealing with the aftermath of this unpredictable disease. The conversation about long Covid may have come a long way over the last couple of months thanks to ongoing research, but there’s still a lot of questions to be answered: as an NHS worker, Evans has already been offered the vaccine, but the criteria for receiving the jab requires her to have “no raised temperature,” something she’s been unable to achieve since she first fell ill in April. For now, she must wait – for the vaccine, and for further support.

“As a health professional, I struggle to understand how myself and others in my cohort have been, quite simply, abandoned,” Evans says. 

“I’m not saying I haven’t had any care, of course, but it just feels like we know about the people dying with Covid or those ending up in intensive care, and both of those outcomes are awful, but what about us? Why are they not counting long Covid in the daily briefings? I’m an NHS employee and I know I’m not the only person in the whole of the NHS who is off long-term sick because of this.”

Forster, too, feels that the tendency to see Covid-19 as “two extremes” – a mild, easily beaten illness or an infection that puts you on a ventilator – isn’t helpful.

“There’s this whole middle group that tends to get forgotten about, and I think it needs to be considered that there is a huge portion of people who are going to need longer term support.”

Forster continues: “When I first got sick, I presumed I’d be ill for a couple of weeks and then I’d be fine. But it has completely knocked my whole lifestyle to one side, and I’ve had to readjust a lot of things with my work, family and everyday life just to be able to cope with it. I think that impact does get forgotten about. I was naïve in the beginning because I never thought this would happen to me. But it did.”

One thing that’s made crystal clear from these three experiences is how much pressure the NHS has faced throughout the coronavirus pandemic – and how important it is that they receive adequate government support to help those people struggling with the aftermath of Covid-19 infection.

At a time when the NHS is under a level of demand that no one could have anticipated, it’s more important than ever that those on the frontline receive the funding they need to help everyone who needs them – including the growing number of long Covid patients currently facing an uncertain future.

If you’re struggling with long Covid and would like some additional support, you can check out the NHS’ ‘Your Covid Recovery’ online rehab centre which has links to information and resources which can help you with your recovery. The NHS website also has more information about long Covid, including the types of symptoms you can expect and when to seek additional support.

The post-Covid hub from Asthma UK and The British Lung Foundation is also offering support for people left with breathing difficulties after Covid-19.

Images: Sophie Evans, Amy Durant and Hayley Forster

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