As I sat in the neurology waiting area, I felt a big ball of anxiety grow in my stomach. I looked at my wife Rachel and squeezed her hand, pleased she was with me for moral support. The NHS waiting room was tired, and lots of people with identity badges were running around trying to herd people into the correct area. I wondered how many of my fellow waiting room attendees were seeing the same neurologist today and what they had come to discuss.
My appointment had been two years in the making. Since I tested positive for COVID in January 2022, I spent the past eighteen months being passed from doctor to doctor. I was subjected to a barrage of tests to explain my symptoms that never went long after the infection.
They included a ‘foggy brain’, mobility issues and a crippling fatigue that had left me unable to work in any meaningful sense. All tests had come back clear and each time they did a doctor would look at me, shrug and suggest that there was nothing wrong with me.
The thing is, there was something wrong with me, and I knew it. In addition to my physical symptoms, I intuitively felt my body had changed. I was struggling to cope with everyday life, and the smallest issues felt overwhelming for me.
I had purchased a wheelchair so that I could at least leave the house without paying for it the day after, something I later found out was called ‘post-exertional malaise’. I had to get answers and find out what was happening. I had heard that other people were struggling post covid with the same symptoms as me. Facebook groups began to spring up full of people struggling, having the same clear tests and being disbelieved by friends, family and medical professionals.
In my darkest moments, I wondered if it really was real, if somehow my mind was manifesting the physical symptoms. My family kept me going, reassuring me that this previously energetic and driven Vicar was not going mad, that there was something else going on.
It took me eight months to get a referral to the newly formed Long COVID clinic, so I waited for the doctor's call that day with expectation. I was looking forward to speaking with somebody who understood and believed in my condition.
When the call happened, it was the first biggest letdown in the process. The doctor asked a few questions and, in the end, asked about my sleeping patterns. I explained that despite being exhausted all the time, no matter how much sleep I got, it was sometimes hard to sleep for longer periods at night, and I was waking every few hours. After hearing this, he abruptly told me I just needed more sleep and quickly ended the call. I was devastated.
That was it? I just needed more sleep?
My painful joints that hampered my every step, was down to lack of sleep?
My foggy brain, being regularly confused by the simplest of tasks, was down to lack of sleep?
My hands that uncontrollably shook for hours was down to lack of sleep?
The crippling fatigue that left me crawling upstairs was seriously down to not getting a good night's kip?
I had so many questions and spent the next few days in a deep depression. During that time, the Facebook groups were my saviour as they were full of people in the same situation as I was in. The NHS was overwhelmed, struggling with the aftermath of a pandemic and unprepared for the vast influx of people struggling, such as I was. As the months rolled by, I used whatever determination and energy I still had left to get answers.
I made doctor's appointments and explained my symptoms again and again until I finally found a doctor who listened. They suggested that my symptoms might be neurological and referred me. I raced home and furiously Googled various neurological conditions. Maybe I had MS not long COVID? Maybe I had something that actually has a name? Maybe I will be believed by the medical profession and that bloke over the road? I was fed up with people telling me that I just needed to sleep, exercise or ‘get over it’. Maybe finally I can tell them all I had something.
That is why it was a big deal to be sitting in that waiting area two years later. My symptoms had gotten progressively worse over that period, but I felt like I was on the cusp of a breakthrough, a diagnosis of something that would have a recognised path of treatment. My desperation to be recognised and validated overcame fears that I might have had something far worse than what Covid could ever throw at me.
It turned out that the neurology appointment was a breakthrough moment, a turning point in my struggle with this chronic illness, but most definitely not in the way I thought it would be.
From the moment I staggered into the consultation room, assisted by Rachel, it was clear that I was wasting the neurologist's time. Neurologists' time is precious, so I had come prepared. I wrote a timeline of my symptoms in case my ‘COVID brain’ forgot something. She dismissively rattled through the list and declared that my symptoms could be down to anything. I didn’t know what to say, of course they could that was true, but I was there to explore possible neurological explanations. I told her that my doctor had referred me and bravely asked if she would be prepared to do an examination. She reluctantly agreed.
There then followed a two-minute examination, which consisted of a soft hammer and polarising questions. As she used the hammer quickly on key parts of my body, she would ask me questions like,
‘Is your eyesight fine, or do you go blind in one of your eyes?’,
‘Can you walk fine, or are you bedridden all the time?’
As soon as I tried to interject and explain that it was more complicated than that, she raced on to the next question, dismissing me like a naughty child in a biology lesson. In the end, she asked me if I had any questions. I sat there next to my wife, completely stunned. I didn't know where to start. Sadly, the neurologist took my silence as ‘job done’ and asked her silent assistant to see us out of the room.
I was so pleased that Rachel went in with me that day. As I walked out to the car my mind was racing. I immediately began to wonder what I had done to upset the neurologist. Maybe I had got it wrong, and she was correct in that I should not be here, in this hospital, wasting her time. Maybe my list was perceived as too pushy. We sat in the car and Rachel said to me ‘I am so sorry you had to put up with that, what was her problem?’
I felt all the stress and anxiety gush out of me at that very moment as I realised it wasn't me and it wasn't my fault. In the following days, I returned to those same Facebook forums and found stories of people who had also visited grumpy neurologists and were dismissed with nothing. It turned out that neurologists were getting fed up with hundreds of long COVID referrals and were taking it out on us.
When the dust had settled, it became a turning point in my journey. I finally concluded that I didn’t need validation from absolutely everybody, even the medical profession. Plenty of people were supportive and helpful, and I needed to focus on them. I did not need validation to know how I felt and lived this illness every single day.
I eventually found people who would help me manage the condition, even if there is no cure yet on the horizon. Most of all, in a sea of people who do not believe in Long COVID (and even in COVID itself, I found out), I became determined to help other people navigate those choppy waters. I started a podcast, which has been well-received. Its one remit is to let folks know they are not alone.
If you are struggling with symptoms relating to Covid sometime after the infection or know someone who is, know there are a lot of us going through the same thing. We are also trying to make sense of it all and come to terms with what it is like to suddenly rely on mobility aids and family members for simple tasks. Most of all, in the face of medical professionals, friends and family members who do not believe that you are ill, we can assure you that we get it, and we validate you for who you are and the struggles you face.
