Today is my 12th month Covid-versary. Sarcastic yay! This time last year I had chills and fevers for a day, the next day the dry cough started……..
A huge amount has happened to me, indeed the world, in this last year and I wasn’t really sure how to even start writing a blog about it. Or if even to write a blog- should I just let the day go un-commemorated? Plenty have. It's nothing to celebrate. But I feel the day has to be marked somehow as this tiny nanoparticle has turned my, and many others, world's upside down. Please be aware that these are my own thoughts and may not represent those with Long Covid.
Having Long Covid is a loss. It is not the same as losing a loved one, or a divorce, or having cancer. For some it is not as awful as those but for some it is worse. For others it maybe the first loss they have encountered.
Swiss psychiatrist Elisabeth Kübler-Ross explains the psychological process one goes through when they experience loss as the five stages of grief. These can be applied to chronic illness. They are:
Shock & Denial
Now psychologists would have us believe that we work through these stages in some orderly fashion whether it takes days, months or years. I would argue that for Long Covid this simply isn’t true. I may have accepted that I have Long Covid but every once in a while anger at my and others situation will be very prominent. I swing between them all. Much like the Coronacoaster of Long Covid one day you feel you are improving and go for a walk only to find yourself in bed the next.
Maybe this is because many of us haven’t been formally diagnosed, are still awaiting appropriate investigations, or a successful treatment. We have no starting point to work from.
Today I thought I would touch on the first of the five stages Shock and Denial.
"The most familiar stage of grief that people often struggle with is denial. During the denial phase of grief, the person who has experienced the loss may deny that the loss even happened and refused to accept the reality of the event. It is normal to experience this stage because it is a coping mechanism to combat the overwhelming emotions".
So in chronic illness when the shock at being diagnosed subsides thoughts turn to “this is not happening to me” or “I can’t be sick, the doctor is wrong”.
However for long haulers this SHOCK has been completely turned on its head. For us it was:
“Why am I still sick?”
“Chris Whitty said that it was a 2 week mild illness?”
“Why am I the only one who is still ill?”
“Why has no-one else I know got Covid-19 - if indeed it is that as I can’t get a test?”
“What’s wrong with me that I have got so unwell?”
However we KNEW that we were not right, we knew our bodies well enough. We knew at 4 weeks, 6 weeks, 8 that something was amiss.
And then when we joined support groups and realised we were not alone. We diagnosed OURSELVES and drew strength and support from strangers also going through the same thing.
The DENIAL however came from loved ones, our peers and our doctors. Not us.
We were denied validation, acceptance, investigations and treatment from some of our doctors.
Our peers didn’t understand us as they had no-one to compare us to. Were we depressed, anxious, work shy or just lazy?
Our loved ones tried to encourage us back to our normality. How many were told to “man up its just the ‘flu” or “you really should be better by now?”.
The biggest thing we did however was to deny ourselves.
We told ourselves we should be better and so did all the things to prove it -long uphill walks, running, undertaking all the childcare and domestic duties, going back to work whilst still exhausted.
We denied ourselves time to heal.
Through this denial from all around us we have managed to keep strong. We have advocated for ourselves, and others, and we formed patient-led diagnosis. We have done interviews to newspapers and TV to share knowledge and increase understanding. We have been involved in establishing health guidelines, been patient participants in research and even undertaken our own research.
Interestingly the psychologists say when we are at the “shock and denial” stage we should:
“ Do everything you can to learn about your disease. Research treatment options. Explore the internet for some information, but don’t rely entirely on the internet. Seek out others who have gone before you and can offer their advice and support”
“Filter out internal negativity by surrounding yourself with positive people”
“You don’t have to go it alone. You and the people close to you are in this together. Look for a support group for people with LC. If there isn’t one near you, consider organizing one yourself. Chances are good that there are people in your community who would gladly participate if you get things going. Don’t give up hope!”
I would say long haulers have gone above and beyond this despite their own ill health.
For some when they experience loss their mind and body can go into a physical state of shock. When a person experiences shock they may have numbness or tingling in their extremities, feel dizzy or faint, and in severe cases they may not be able to move or speak for some time.
The lasting effects of shock can leave a person feeling mentally and physically incapacitated and interfere with everyday activities like going to work, taking care of daily responsibilities, and even taking care of yourself. Shock can last from just a few minutes to indefinitely and depends on the person who is experiencing it. Please seek the advice of your doctor and/ or mental health therapy for someone who is experiencing the effects of shock as the result of loss or trauma.
It is important for us to understand the emotions we are feeling if we are to work through our grief. It may not be a linear recovery, both physically or mentally, but I am ever hopeful we will reach the end when the carriage stops, we can remove the body restraint and step off the ride.