Patient experiences of COVID-19
People who had experienced COVID-19 speak about the severity of the symptoms of coronavirus being wide-ranging. We know that there are factors associated with coronavirus which mean some people are statistically more likely to catch the disease than others - people who are overweight, have underlying medical conditions, who are older or who are from a Black and minority ethnic (BAME) background appear more at risk. However, we also see a number of patients among younger people who are fit and healthy also suffering from symptoms of COVID-19.
Some people with COVID-19 are admitted to hospital or an intensive care unit, while others recover at home. Some people may have the disease but are asymptomatic - that is to say, they have tested positive for COVID but do not show any symptoms of COVID-19.
Some people in the UK recover well post COVID-19 while others experience so-called Long COVID, experiencing symptoms of chronic fatigue, anxiety and depression, weakness and weariness.
Here we share some individual stories from people who have experienced COVID-19.
We are endebted to Simon from the West Midlands, who shared his COVID-19 recovery story after being in the Intensive Care Unit in the Queen Elizabeth Hospital, Birmingham (part of University Hospitals Birmingham NHS Foundation Trust). Simon was speaking as part of an event for healthcare professionals hosted by Circle Rehabilitation and the West Midlands Academic and Science Health Network in July 2020.
In his own words:
I'm not medical at all, so excuse me if I get terminology wrong or get things mixed up. I'm a technologist at heart; I'm a technology consultant for a boutique consultancy in London.
I got COVID on what it was around the 6th of March. I was skiing in France at the time with some friends. There were ten of us. I fell ill actually on the way home. Under the guidance at the time, I self-isolated for just over 10 days. My wife, who has a medical background, was very concerned with what was happening, so she asked me to get a test done.
We rang 111. The ambulance team came round in full PPE equipment, took me to the Queen Elizabeth Hospital, gave me a swab test, brought me home. I then waited a further five days for the test results, during which time my symptoms got a lot worse and felt very, very real. A crushing chest pain, a really bad cough. I could hardly breathe. My wife rang 999 and got an ambulance there. I think if she had not, I probably wouldn't be here today, to be honest. They came and got me, took me to the QE. I had x-rays, blood tests, lots of prodding. And then after about five hours, they said to me: look, we think we need to intubate you very quickly.
I was in intensive care – 11 days I was on a ventilator, in a coma for nine days. And then once I got out, I spent a few days on the ward, then came home. It took a further probably nine to ten weeks of recovery.
There was a 12 week test after I come out of hospital in terms of my overall fitness. I had a cardiogram, ECG. I had X-rays, blood tests.
I'm probably still slightly in recovery, to be honest. I think the key things for me were, never being in ICU before, I struggled mentally as well as physically.
So I think the key the key thing for me in terms of rehabilitation is that it’s not only the physical rehabilitation, but mental rehabilitation.
My wife found out about certain sorts of mental support for me in terms of healthy minds, the support group ICU Steps – I joined the Chester group actually – we also looked into materials educating me around some of the after effects of ICU.
When I came out of hospital I was short tempered and I had short term memory loss. I was getting frustrated very quickly.
Because of the psychotropic drugs that were in my system, I had hallucinations, which I felt were real. I knew they couldn't have been real because of the circumstances, because of what I saw, but actually, it's not a dream; these are things that you believe are actually happening to you. So you've got all of these aftereffects coming out of ICU, which I've never heard of before, because I've never had this kind of experience before but I tried to understand and appreciate them. The first step to my recovery was accepting that they were not real. Then it was learning from the fact they were not real and applying that to how I understand them and piece of the puzzle together; for my mind to try to make sure it was right. I used exercises and use learning techniques to try to then improve that.
There were a number of things for me that I had to understand. Not being medically minded didn't help. And there wasn't a lot of support for me in that area when I came to hospital, and I was worried ‘would I get it again?’ I still haven't had an antibody test. I don't know if I am immune. I couldn't give plasma because I haven't been fully signed off in terms of recovery. I wanted to give plasma, but I couldn't.
So actually, there is a lot of learning in terms of people's psychological fears and state that need to be applied.
I think in terms of COVID recovery, I think there's a tidal wave coming of people that are going to need this support and help going forward. People are trying to just manage patients while they're in hospital in care and I think there is going to be a shift at some stage to move into that.
I think also for me, again, it was a scary experience, but actually I've had more fear post-COVID than during the actual event because adrenaline and other things keep you going.
Actually in the last few weeks, I've probably had more of a wobble than when I came out of hospital almost 19 weeks ago.
In hospital your mindset is just about your physical recovery. It's not about ‘what I do if I travel there?’ or ‘what if I get a train?’ or ‘what if I do if I go out and have a public event or see people?’ And actually, I think that it's a bit like grief. It takes a while for your psychological state to warm up to the fact of what you're going to do in the future. So, again, that that's pretty much my experience as it stood at the time.
I've signed up to a 12 week course of healthy minds, which is personal counselling.
Obviously, physical support is important in terms of keeping yourself healthy and everything else, so I and 13 of my friends are doing a 100-mile charity cycle for the Queen Elizabeth Hospital for the physiotherapy department, for Ward 515 and for the ICU ward. So I'm training for that. I think also you've got to give yourself time as well. It's not a plan as such, but I think you've got to give yourself time to adapt and you've got to not push yourself too hard. So, for example, with work, although I'm doing work, I'm not working a 70-hour week, which I probably would have been doing before this. I'm doing bits and bobs with clients, but I'm not spending loads of time and travelling loads of places because I know mentally that's quite tiring.
So I think you've got to give yourself time to adjust and to get back into normal life. It's really important.
I had flashbacks after I came out, actually probably about three or four weeks after I came out of hospital then the flashbacks stopped. For example, I was watching Holby City one night - my wife loves that show- I got a crazy flashback flashback during that program. It was quite strong and it was quite vivid; I think certain things tend to trigger them as well. But actually, recently I've not had any, to be honest.
People need to be given the right options of people to speak to as part of that recovery process – the one thing is around education. I'm lucky that I've got access to my wife and to her colleagues and to her friends to access those things. I guarantee that a large percentage of the population won't have that access and probably won't find that information out. So I think we need to be mindful of giving people the opportunity to find out resources in an area that they can get their own recovery as well and help themselves. That was huge for me.I don't think there was anything that was given to me. We had to find it all out.
Ongoing symptoms? My wife thinks I'm a little bit supercharged. She thinks I'm a little bit of a hyper version of myself still, and I still haven't calmed down, which is probably true. So I think although I've had a checkup and there's no actual long term damage, I think mentally there are still things that I need to take on board and understand.
I think I'm still a little bit wired and I tend to rush things quite a lot. So I think for me it's more around the mental state. That's probably the ongoing symptoms. But not physical.
I joined the ICU Steps, which was a group of people who had all been through an Intensive Care Unit. Unfortunately, at the time, because I was quite early on in my experience, there wasn't the flow of people coming into that community. I think if I'd gone into it now, there probably would be a lot more people in that kind of support group. And although it was helpful, I did struggle a little bit because a lot of people in that group had had experiences two, three, four years ago and they were still helping and asking for support. And I got the feeling that people were using it as much as a support group socially as much as it was in recovery. I think now if I'd gone through that experience, I probably would go back to that group again. So ICU was really good and the guys that organised that were lovely.
I think the ICU Steps forum was really good. If they have enough people from COVID in there now, I don't know.
I haven't got a big extended family, but I'm quite lucky in the fact that my wife was there. She could answer questions. She could talk about my condition and advise people. But I think if I hadn't got that advice, I would have struggled. And I feel I hadn’t got her help I would have struggled.
I'm quite lucky that we've got a good relationship with our GP. We've known her a long time our local surgery is a teaching surgery for the Queen Elizabeth Hospital and people are quite educated in terms of what support was needed. So my GP was ringing me regularly. We've had four follow up appointments since I was out and she referred me to have an echocardiogram as well.
I think in terms of finding resources, my wife's the best person to answer that question. But she spoke to people at work. We spoke to ICU Steps through Twitter and we referred to that through again through one of my colleagues. So I think a lot of the information, the materials we found was just through people my wife knows and I've spoken to and through the consultants that treated me at the time.
At the time there wasn't a lot for me to find out on the internet apart from the NHS sites and some of the normal sites that people would go to.
I was in hospital for about 38 and a half days, so I was discharged relatively quickly after I came out of ICU. I was on ICU for 11 days.
When I came out of ICU, I was actually just at the crest of the wave starting of people coming into hospital. The Queen Elizabeth Hospital had been locked down. People weren't allowed in. It was military operation precision in terms of preparing wards. I remember being half awake in ICU, and seeing all the equipment beds coming in, and they were obviously concerned it was going to be a massive rush of people coming in. And I think they just needed a bed.
So I had some physiotherapy support when I was there. Two of the physios came to see me a number of times, and they tested me helped me to stand, helped me to walk and just some breathing exercises. And to make sure that my oxygen levels were right before they actually let me go. But again, it did seem quite fast that I was only on a normal ward for a couple of days and then I was discharged.
I think it comes back again to the psychological aspect because I didn't know any of the issues until I got home, until probably weeks into my recovery at home. And no one had really warned me, apart from the odd comment around ‘you might get a flashback’ or ‘you might be a little bit of a short term memory loss’. There wasn't really a lot of initial support to help me understand the impact of how traumatic it would be on going after I'd come at a hospital and none of that was explained. I wasn't really understood.