Patient stories

Here you will find a library of Long COVID patient stories to shine a light on lived experience of Long COVID, capturing things such as:

  • The symptoms patients have experienced 
  • The impact Long COVID has had on them, their family, friends, work.  
  • The support they received from healthcare settings like the Long COVID service
  • The tools and strategies that helped them the most  
  • Personalised top tips for recovery  
  • Current versus previous wellbeing status, functional capabilities, employment status  

We hope that these stories will help to validate  and reassure other Long COVID sufferers (and their loved ones/carers/employees) of the help that is available and that with support, implementation of tools and strategies, that improvements can be made.  

Nicola's story

Nicola, 46 and a mum of two from Havering, recalls her experience of having Long COVID following her initial COVID diagnosis in September 2020.

“After the initial set of symptoms, I was ill for ten days. But after the infectious period had passed, the symptoms started to affect me more and more and some even persist today. Although I wasn’t infectious ten days after the initial Covid diagnosis, I had a temperature every day which lasted for nine months, which was odd. The doctors thought it may be my immune system fighting the range of symptoms I was experiencing.” 

Her other symptoms included extreme fatigue, disturbed sleep, joint and muscle pain, brain fog, breathing and gastric issues:

“I noticed I couldn’t function well enough on a day-to-day basis. I remember my driving being very erratic and I didn’t feel my responses were quick enough. For example, I remember at the traffic lights, as they turned green, it wouldn’t register in my mind that I should go. I’d usually class myself as fit and well yet my health was having an impact on my family life too.”

As a mum, Nicola also recalls the impact it was having on her children:

“The kids suffered too because we weren’t able to do the joint activities we loved so much…so they missed out too.”

Nicola, who works in a school recalls the impact it had on her job:

“My employer was very accommodating and they referred me to the Occupational Health team after I’d been signed off sick. I haven’t been able to go back to teaching full time so I now do three days per week in a desk-based role. However, I still feel anxious about my symptoms and am continuing to wear a mask at school.”

She speaks highly of the support she received from the NHS:

“Although I wasn’t hospitalised with COVID, I did get good support from my GP over the telephone who was sympathetic. I was referred to the Long Covid Clinic at King George Hospital in March 2021 and was seen in May. Following an initial consultation with the doctor I was referred to an occupational therapist and a physiotherapist, both of whom were great! They both visited me every few weeks and the physiotherapist also referred me to exercise classes which I’ve recently started.”

Nicola was also referred to online Cognitive Behavioural Therapy (CBT) for the anxiety she was suffering from, through Talking Therapies. She still suffers from some nerve damage in her back and the brain fog is still there. Generally, she feels her symptoms, including her sleep patterns are improving, albeit gradually.

X's story

Patient X (who wishes to remain anonymous), a retired teacher and mum of three from Hornchurch, recalls her experience of Long COVID and her journey to recovery.

“I became ill on 26 December 2020, together with many other members of my family. I recall feeling unwell and although I had no cough or cold symptoms, I just felt out of it. After testing positive for COVID, the initial set of symptoms lasted for around two weeks.”

Recalling her experience, she says:

“Things really came to a head two weeks after that diagnosis, when my family had to call for an ambulance. Looking back, they told me that I just didn’t look right and had become unresponsive and was making ‘grunting’ noises. I also remember passing more water than I usually would. After being transferred to Queen's Hospital in Romford, the NHS staff looking after me told me I had low blood oxygen and I was in hospital for two weeks under the care of the various NHS staff who looked after me. I came very close to being put on a CPAP machine. (A CPAP machine delivers a stream of oxygenated air into your airways through a mask and a tube.)''

Her symptoms began to slowly improve and shorty after she was transferred to a COVID ward, where her oxygen levels slowly began to recover. Since being discharged from hospital, many of the symptoms have persisted and she was formally diagnosed with Long COVID by her GP. Long COVID is diagnosed when symptoms from a COVID infection continue after 12 weeks and cannot be explained by an alternative diagnosis. Symptoms can vary a lot, fluctuate over time and may have an impact on your ability to do your day-to-day activities. She says that she is around 85% back to her usual pre-COVID self.

“Ever since I was diagnosed with COVID, even today I am not fully recovered. I’ve had issues with my memory and brain fog and can’t remember the times my family visited me in hospital, despite being awake and responsive. I also get tired easily and suffer from fatigue. My day to day has changed I would say. I can’t do things I used to do like going to the park for the day or going on shopping trips. My family also gets annoyed sometimes because I repeat myself in conversations as I forget the details of chats we’ve already had. I’ve had a good experience of the Long COVID clinic and feel honoured to have been able to access these services. Initially, I had 2 or 3 telephone consultations with the doctor, followed up by care from the occupation therapist and the physiotherapist team which has helped. The occupational therapy in particular has been the helpful as it’s taught me to pace myself and they provided me with mental health support. I have also been referred to the NHS gym membership programme and hope to continue with this so I can I feel stronger.”