5 Years Later, Women Are Still Living With Long Covid

March 2020. Say that date, and everyone will shudder. The beginning, for most of us, of the Covid pandemic. Everyone knows that time period well, what it did to our lives, the lives we lost and the devastation that came with it. Then, life seemingly went back to “normal” — but not for everyone. 

Long Covid has affected 6.9% of Americans (as of 2022 data) and 2.9% of British people (as of 2023 data). Women are far more likely to get long Covid than men, which is another piece of the puzzle we don’t yet have an answer for. The concrete knowledge stops there — long Covid is still a debilitating diagnosis without a cure or known cause, and there’s no promise of ever recovering. Many people with the condition aren’t believed by healthcare professionals.

Dr Emma Wall, a specialist in long Covid at UCLH, believes her patients though. She’s trying to figure out what the future holds for people with the condition, and is currently working on a drug trial looking into how existing medicines could be repurposed to improve long Covid symptoms. “I'm often the first doctor who tells my patients: you are sick, this is a real disease, we’re going to help you manage it. This will be after struggling through GPs to get the referral,” she says. “Patients regularly cry because of the emotion of hearing that and finally being taken seriously.” Lots of patients come to her with depression too, because as Wall puts it, “poor mental health is a very normal response to having an unknown prognosis that limits your life while being told by several doctors that there's nothing wrong with you.”

The definition of long Covid, Wall explains, is broad. It’s anyone with persistent symptoms after 12 weeks of having Covid — that includes a patient of hers who had a stroke after Covid, another who’s been out of work for four years due to fatigue, and a single mum who struggles to walk up the stairs in her flat building when the lift breaks. Wall says research has been underfunded. Why? The answer might, in part, lie in the fact that women get long Covid the most. There are theories as to why this could be the case Wall explains, including that it might be to do with the X chromosome, or the fact that women make up the majority of the healthcare workforce so they got more exposed to Covid to begin with, or perhaps that many mums who needed hospital care when they first got Covid couldn’t go or rest much due to childcare responsibilities. We know women’s healthcare, specifically women of colour, has routinely been deprioritised, and Wall believes this has something to do with the lack of answers five years on. “I do suspect if this had happened to more of the male population, we wouldn’t have seen so much dismissal,” says Wall. 

Wall is at once honest and damning. "Some senior doctors have expressed the view, to me in private, that they believe symptoms of long Covid are caused primarily by poor mental health or psychological distress, and not physical disease,” she says. The old trope of some doctors seeing women as mad is alive and well in long Covid care.

We can’t forget the people still living with long Covid. In fact, some experts argue we’ve already seen what’s happening with long Covid sufferers play out before with another condition, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a long-term condition causing fatigue, brain fog and body aches. Like long Covid, ME/CFS affects women more than men, doesn’t have a known cause or cure, and patients are often dismissed. The symptoms are similar, if not the same. 

Dr Charles Shepherd, from the ME Association, is currently working on the link between these two conditions, seeing where they overlap and how symptom management compares. He’s trying to learn if what we know about ME/CFS can help those with long Covid. “People are so frustrated, they will try anything and they’ll spend vast amounts of money on all kinds of unproven and highly speculative forms of treatment,” says Shepherd. “There are a lot of people out there promoting this, including clinics — it’s the same with ME/CFS.” Long Covid clinics across the world popped up in the wake of the pandemic, promising results with unaccredited treatments at a high cost. Forums recommend random products to people who are desperately trying to get well. People arrive at this point because they’ve already been neglected by their first ports of call. Shepherd says “a lot of doctors don’t know about or recognise these conditions, and researchers aren’t interested in it”. He says it took a long time for the healthcare industry to make the link between the two conditions to begin with. His goal is to make his patients' lives “as good as we can”.

Life moved on by 2022 for vast amounts of the population, suffering no more than a handful of sick days. If you’re lucky, Covid is now a horrible memory that doesn’t have a hold on the present. But life hasn’t been so kind to those still living with it, and the most recent years in their lives have been hell.

We spoke to four women about their experience of long Covid.

When I got Covid three years ago, I was very unwell with it. I started realising, I’m not getting better. I had heart attack symptoms so I went to the hospital — it was put down to long Covid. I realised no one has the answers after I went to hundreds of doctor visits, hospital appointments, A&E, the NHS long Covid clinic. I then joined Facebook groups for people with long Covid, and read about people using fasting and nicotine patches to improve symptoms, which I’m trying too. [Editors’ note: There’s no evidence and research on these methods; please consult your doctor]. I’ve had therapy to help come to terms with it all, too.

Before, I had career ambitions, I exercised loads, socialised, and was enjoying my life. With long Covid, I no longer have the health to live my life anymore. I’m struggling to work full-time. I’ve come to accept that I might not get better. I might have to live like this forever. I’m basically grieving for the life I’ve lost.

On a bad day, I get up and work from my bed, make myself presentable for client calls (I work for an agency), shower and eat something that doesn’t require cooking, lay on the sofa to watch TV for a few hours, and finally move to bed, read, maybe call a friend, then go to sleep. I used to order takeout a lot, but I soon saw I couldn’t afford to keep doing that, so I meal prep now on good days. 

This experience has really shown how great my friends are. They understand if I need to cancel, or will come to me, and they call to check in on me. It’s also shown me people can struggle to cope when a loved one has an illness they didn’t have before. It’s one of the reasons me and my ex-partner aren’t together anymore. At the time, it felt like long Covid had taken so much from me already, then my relationship.

Over the three years, I get less coughing, fewer chest pains and heart pains, but most of the symptoms like fatigue, brain fog, breathlessness… they’ve remained debilitating.

I’ve been living with long Covid since February 2022. At first I didn’t recognise I had it — I mistook it for depression and job stress. I was so tired all the time, had a constant brain fog and terrible memory. I was baffled by how I had graduated college at the top of my class and always been sharp, witty and quick but now was like a duller, slower version of what I used to be. 

I started performing as a mediocre employee, chugging energy drinks and consuming around 250mg (three cups of coffee) of caffeine a day. I would go home everyday so exhausted and barely have enough energy to cook simple things, then watch a show then go to bed. Now freelance, so I can work from home and my chronic fatigue and brain fog is more manageable as I distance myself from clients and don’t have to work in-person or quickly. 

Long Covid changed my whole personality and I’m still figuring it out. I go to one event now and I have to sleep for 12 hours after and I’m exhausted the next day. I’m using caffeine and microdoses of shrooms to medicate myself out of the fog and fatigue. [Editors’ note: This is illegal and we don’t endorse taking magic mushrooms.] Microdosing boosts my mood and energy, as it helps take me to a head space where I can be my most productive, social and creative.  

I don’t think I can ever dive back into creative hobbies like I used to. My social circle has dwindled because I stopped going out, and don’t have the energy or capacity to date. I feel middle aged in my twenties.

I was 20 when I got Covid in October 2020. It was my second week back at university after spending the first year remote. My initial infection seemed like a bad cough and I recovered within a few weeks and thought I was back to normal. Then I started having some worrying symptoms in early November. I was sent to A&E because they thought I was having a heart attack (I wasn’t) and the consultant ordered follow up tests. My GP didn't do these for about six months, as they kept saying I was young and healthy and probably anxious about the state of the world… but I kept getting sicker. I got an emergency referral to haematology in April 2021 and couldn’t attend my classes.

Since 2021 my life has mostly been my bed, my living room, and hospital appointments. I have fatigue, neurological issues like neuropathic pain, muscle spasms, brain fog and new onset allergies to a lot of foods. Before this, I was a healthy 20-year-old who loved going to the gym, concerts, cooking, and was working to help pay for university.

I've been diagnosed with various things like being immunocompromised. I have POTs (postural orthostatic tachycardia syndrome), ME/CFS, and post-exertional malaise meaning anytime I exert myself, I get flu-like symptoms. This can leave me bed bound, unable to eat or talk much for days or weeks. I use a wheelchair now.

I can't find a part-time job that will take me on with the accommodations I need, like remote work and flexible hours. A lot of friendships have slowly petered out because I don't have the energy to do things I used to bond with people over. Dating is pretty much out of the question.

A big problem with long Covid is that a lot of us disappear from people's lives due to our symptoms, so a lot of people forget this is an issue. There are so many like me who have lost a lot and are just trying to hold on.

In lots of ways, it feels like lockdown never ended for me. I’ve had long Covid for two and a half years. Despite my official diagnosis, I still to this day have encounters with medical professionals where I am not believed.

I’m mainly housebound, only leaving the house for appointments. I struggle to do simple things like shower. It’s impossible to exercise without flaring up my symptoms. I often don't have the energy to look after myself, I struggle to make my own meals and to walk longer than five minutes at a steady pace, I struggle to look at screens and to read and comprehend text, and I rely on mobility aids. 

Socially things can be awkward. I find myself explaining and apologising for my limitations. I often struggle knowing when and how to disclose that I have long Covid. I know that for many people the pandemic ended, and a reminder of Covid isn't pleasant conversation as so many people suffered and died. In the last few years I've discovered the online chronic illness community and have found new friendships and new ways of communicating about this illness. But at the same time, it feels like the divide between me and friends from before Covid grows further.

There are times where I’m hit with the guilt of not being able to do enough and for not being able to work, and I often put pressure on myself to "speed up" the recovery process even though that isn’t something I can control. I’m fortunate my family is understanding and they support me a lot, but I still feel guilty. The opportunity to have a career has also been on pause and joins the rest of my former life in growing dusty on a shelf.