7 Things People With Long COVID-19 Really Want You To Know

"There was one GP who just thought it was all anxiety."

People struggling with long-term symptoms of COVID-19 ― dubbed long COVID ― have spoken about the challenges they’ve faced since contracting the coronavirus earlier in the year.

Their testimonies have been shared as part of a new study, published in the British Journal of General Practice Open.

The purpose of the interviews ― conducted with 24 people still struggling with persistent and long-lasting symptoms of COVID-19 ― was to raise awareness of long COVID among doctors. There are no exact statistics on how prevalent it is, but the COVID Symptom Study app estimates it impacts 1 in 10 people who become infected with the virus.

Participants described how hard it was experiencing, understanding and managing their symptoms. They also discussed the range of support they’ve sought: from peers, online, using complementary therapies, trying special diets and supplements, as well as from formal health care.

None of those who took part in the interviews had been admitted to hospital during their initial suspected or confirmed coronavirus infection ― and half hadn’t been tested for COVID-19, as testing wasn’t widely available at the time. Of those who were tested, only one had a positive result.

Many of the participants in the study were female, too. A report from the Tony Blair Institute for Global Change said long COVID affects women more than men ― and the median age of those suffering is 45.

The study, led by Keele University, concluded that further research is needed to “better understand recovery trajectories” and to inform and improve the care of patients. Here’s what we can learn from the stories they shared.

1. COVID-19 takes its toll on the body.

A 20-year-old woman involved in the study spoke about how she used to enjoy running and exercising, but can barely go on walks now. “I’m just exhausted and I just want to know why I’m so exhausted,” she told researchers.

The woman was particularly concerned about the long-term impact on her lungs. “I’m very conscious of my lungs because I don’t want to put too much pressure on them,” she said. “I know instantly when they’ve done too much because the pain is back, especially in the right one. It’s quite bad.

“I used to enjoy running, and exercising, and stuff like that. I rarely even go on walks now because I know if I walk to the end of the street, they’re going to start hurting.”

Participants described how the persistent problems they’ve had changed them, often using the phrase “compared with how I used to be.” One man, 60, said of his neurological symptoms: “I wasn’t just fogged, I was confused. I had a very difficult encounter as a result of just being confused about things and that took a long time to resolve. I love words and I enjoy the business of communicating, and I felt that part of my life was lost. Really, I just did admin, I didn’t do anything that required clear thinking.”

2. People are trying anything to manage their symptoms.

A quick glimpse at any Long COVID Facebook support group is enough to see just how many people are struggling with long-term symptoms ― and many share tips and tricks of how they’re managing to get by.

A 42-year-old woman told the Keele study: “I mean initially I started taking vitamin D. Had a joint vitamin C and zinc thing, which I didn’t take every day but I took some multivitamins, but then I was a bit unsure really... my husband’s quite anti-vitamin use... So anyway, then I took nothing for a while, and then I more recently started the vitamin D again, and I’m on B12 just because of all the burning in my feet... and a probiotic and some omega-3.”

Another female participant, 30, said she’s having acupuncture, massages and dry-needling to try and ease her symptoms, which she hopes will help: “What I found helpful for me with the fatigue was anti-inflammatory but also anti-histamine diet — it’s very strict, but it really helped me, so the moment I started to do it, I noticed improvements with the neurological symptoms as well.”

3. Not being believed by doctors is hard.

Many of the study’s participants described the difficulty of accessing care, partly due to the move to remote consulting during the pandemic, but also feeling their symptoms were not believed or recognized by healthcare professionals as warranting care. This is something those with long COVID have told HuffPost UK repeatedly.

All participants emphasized the importance of finding the right doctor or GP: someone who would listen to and believe them, taking their concerns seriously.

A 40-year-old woman told researchers: “I tend to speak to different GPs every time. There was one GP who just thought it was all anxiety... she said, ‘There’s nothing wrong with your lungs. This is all anxiety. You must treat your anxiety. There’s nothing wrong with you. How are you going to manage the pandemic if you don’t treat your anxiety?’

“That was really upsetting because I knew I was short of breath... I just cried and also, it didn’t help because, at that stage, it wasn’t known about the ongoing symptoms and my husband wasn’t massively supportive at that time... I just felt very, very alone with no one to support me or talk to me.”

4. Relapsing symptoms are tough.

One 50-year-old patient described the ordeal of a relapse in symptoms, which many with long COVID appear to experience. They can feel like they’re getting better, only to be hit by a wall of fatigue ― or a host of new symptoms ― once more.

“I could still feel this weight on my chest. And then after about 14, 15 days I woke up one morning and it wasn’t there,” she said. “I thought, ‘Oh I’m done.’ It was such a relief, I can remember the feeling, you know thinking, ‘Oh, you know I’ve managed to get through it’.

“And that’s when the fatigue hit... it was just like I’d been run over; you know I felt, gravity felt like it was applying extra on my limbs. And I couldn’t seem to manage to do anything, I stopped walking completely. And the doctor suggested, you know, post-viral fatigue and to rest, so I stopped doing anything at all.”

5. Pacing yourself is really important.

Many long COVID patients cite the need to not overdo things in order to avoid a relapse of symptoms. A 34-year-old female patient said her symptoms are so bad she is unable to peel carrots immediately after peeling potatoes ― she needs a rest between.

“I really have to pace myself... I couldn’t do two or three household chores back to back, I have to do a chore, sit down for 15, 20 minutes and then do the next, which frustrates me, it’s like peeling potatoes, I can’t peel the carrots straight afterwards,” she said.

6. Support groups can be a blessing, but in moderation.

Throughout the pandemic, many people with long-term symptoms of the virus have sought solace and support online. But some stressed that it can be quite anxiety-inducing too.

A 34-year-old female patient said: “Initially it was very encouraging that I wasn’t on my own, and I wasn’t making it all up and I didn’t feel like I was the only one, but the more it’s gone on, it’s scary, so I try to avoid it now, it affects my mental health, and I don’t feel like I resonate any more with some of the stuff.”

Another female patient, aged 31, said of internet support groups: “Yeah on the Facebook groups that I’m on, I mean to be honest, I try not to read that group too much because it depresses me, makes me a bit anxious.”

7. Being listened to is a powerful thing.

Many of those still suffering from the illness simply wanted their voices to be heard – and for their experience to be recognized.

One 42-year-old female patient said: “I have to say it was a really powerful experience speaking to the GPs... just the experience of being heard and feeling like somebody got it and was being kind about it, but you know it was okay that they couldn’t do anything, I just kind of needed to know that I wasn’t losing it really and it was real what I was experiencing.”

Another said the same of her doctor. “She just listens a little bit more to what I’m saying and she’s much more willing to say, ‘Of course, we don’t really know what’s going on because it’s a new virus.’ She doesn’t try to pretend that she understands what’s going on, which is good.”

This story originally appeared in HuffPost UK.