What was the process like?
My lungs relapsed and I was sofa-bound and bed-bound for months whilst creating this project – it was emotionally and mentally the most gruelling work that I’ve undertaken, yet equally the most purpose-filled and fulfilling.
I didn’t even know that I was suffering from PTSD back then but I recognise what it was now, and as a result, I was living my own trauma plus feeling the pain of every sufferer’s story. I cried after reading every story – there were 320 messages altogether so you can imagine! I had to take many breaks because it was just too painful and distressing but I finally got there, thanks to the amazing support of the community and loved ones cheering me up.
In Punjabi culture, we have a saying that ‘one person is alone but two people are the strength of eleven’.
Seeing stats is one thing but reading about what Long Covid had done to people’s bodies, mind’s and lives in their own words was another. And seeing all of our stories put together created an overwhelming sense of this crisis that was unfolding – our reality.
I wanted to show their names and pictures to prove the authenticity of the stories too.
I shared a call out on social media and asked sufferers to include their age, their symptoms, when people first caught covid, their previous fitness level and what they were unable to do now, their experience with getting medical help and how it affected their life and mental health.
It was important to me to show a wide representation of sufferers – highlighting the effects on children (which I found the most heart-wrenching), doctors and nurses and people who were very physically active. Medical professionals with Long Covid risked their lives to treat others and now they themselves were severely debilitated. Plus, hearing stories from them gave the project greater ‘validation’ – as if people ‘believed’ it more if it came from a doctor or nurse.
This project was essentially built on trust. It takes a lot for someone to open up and share their story – I know, because I did it many times, plus we’re experiencing the trauma in real time and communicating that with words when you can’t think of the words is no mean feat. I felt a deep sense of humility and gratitude that they trusted me.
The project has a trigger disclaimer before people read it – I knew that the project was likely to cause emotional distress from reading other’s stories and also seeing what happened to me was alarming for fellow Long Covid sufferers. I didn’t want to insinuate that all Long Covid sufferers had blood clots so I needed to be careful with my words. However, it was an issue that would affect some (and even doctors weren’t aware of it at the time) which is why this awareness needed to be raised, urgently.
The tagline of the project is “you never think something like this will happen to you, until it does” – I wanted the public to understand just that - this could happen to them too. The majority of us were very fit, had ‘no pre-existing issues’ (many share the misconception that we didn’t get better because we had ‘issues before’ which simply isn’t true). Even if we did, that’s not the reason why we didn’t get better.
I had something that most long haulers didn’t have – evidence of a new medical diagnosis. I was one of the lucky ones to have found a specialist that believed me and carried out extensive testing with the results defying respiratory medicine.
For the many that were still being disbelieved, I felt a duty to use my story to educate people. It shouldn’t be this way – I shouldn’t have to ‘use my story’ in the hope that it can educate medical professionals treating other Long Covid patients, but this is the stark reality that we were living in then – and one which we’re mind-blowingly still living in now.
The project had five main aims:
1. For long haulers to use the project as a tool in their advocacy for further testing.
2. To show long haulers that they’re not alone
3. To inform doctors and researchers about our lived experiences.
4. To raise public awareness of what it feels like to have Long Covid and the disastrous impact on the quality of life, particularly in non-hospitalised patients.
5. To help the #CountLongCovid campaign.
Also, I couldn’t talk because of the fiery sensation in my chest and severe breathlessness, so trying to explain to loved ones what was going on was hellish. I knew for others it would be the same. They could send this project to their loved ones to show them: ‘Look I’m not the only one suffering – the severity of this isn’t in the news yet but it’s very real.’