Everyone Is Amid A Pandemic
The world has found itself amid a pandemic. Coronavirus, specifically COVID-19, has wreaked havoc on the world, and life is no longer what it once was. Much of the world is now on lockdown, only able to go out for one of several reasons such as going shopping or exercise, for example.
As such, loss has become an intimate component of this new dystopian reality. The loss of being able to go wherever you want, whenever you want. As the supermarket shelves are empty due to panic buying, there is also a loss of what we would typically eat. And a loss of normality.
"Loss has become an intimate component of this new dystopian reality. The loss of being able to go wherever you want, whenever you want. The loss of what we would typically eat. The loss of normality." Click To TweetThe path that we would usually find ourselves on has now become overgrown and unrecognisable. As a result, losing our way and finding ourselves on a completely different road, no longer able to find our way or even know what direction to take next.
The Pandemic Through The Lens of Chronic Illness
For the chronic illness community, however, it feels that life has not changed. Thanks to the chronic life, we already spend a significant amount of time stuck at home, and as a consequence, we are more isolated than we often realise.
Furthermore, the feeling of loss is all too familiar. Loss often becomes another feature of life with a permanent condition, as much as the symptoms that accompany it. It becomes an old friend, making its presence felt when our body once again redefines itself. And as it does, yet again, we lose something else precious to us.
"Loss becomes an old friend, making its presence felt when our body once again redefines itself. And as it does, yet again, we lose something else precious to us." Click To TweetThe loss of mobility. The loss of independence. The inability for spontaneity. The loss of friendships. And the loss of control. When living with a chronic illness, the deficits can be infinite and extensive.
With regards to the current pandemic, the only silver lining that we can hold onto that it will not be forever. It too will pass, and eventually, life will return to normal. And everything that was lost will be recouped.
For those like myself, living with a long-standing health condition, however, we are not as lucky. The losses that we accrue as a consequence of them, we cannot reclaim. For us, it will never pass, and life will never suddenly return to normal. The reality for us is that there will always be further loss just around the corner. It continually lurks in the shadows, ready to strike at a moment’s notice, and prepared to steal something else from our lives.
"For us, it will never pass, and life will never suddenly return to normal. The reality for us is that there will always be further loss just around the corner. It continually lurks in the shadows, ready to strike." Click To TweetThe Continuing Grief of Loss And Chronic Illness
When diagnosed with a chronic illness, you never expect to feel such regular periods of grief. Nor do you foresee to grieve so intensively. And never can you imagine that the need to grieve happens with considerable frequency.
When living with a chronic illness, unfortunately, there is no getting better or being cured. Instead, your previous self, your old body has been lost. And with it, emotions such as grief, anger, and shame accompany this new life. Often, these emotions become as much a part of the illness as the physical symptoms. And they also attend the many changes and losses in and around us as we navigate life in a chronically ill body.
"Often, these emotions become as much a part of the illness as the physical symptoms. And they also attend the many changes and losses in and around us as we navigate life in a chronically ill body." Click To Tweet
My experience has taught me that as when new symptoms emerge or existing symptoms worsen with alarming regularity, there is a further loss. As such, the grieving process starts again.
The Losses From Living With FND
I can no longer remember what it is not to experience such strange, severe and relentless sensations throughout my legs – those such as crippling pain and constant and debilitating trembling. I have lost the normality of what it is to live in a healthy and fully functioning body.
"I can no longer remember what it is not to experience such strange, severe and relentless sensations throughout my legs. I have lost the normality of what it is to live in a healthy and fully functioning body." Click To Tweet
For so long now, I have lived with such unpredictability regarding the functioning of my legs. Of never knowing when my legs will suddenly give way. Events that and leave me lying in a heap on the floor, unable to get back up. And so, I have lost and must grieve the inability to trust my own body.
When living with a chronic illness, any chronic condition, especially those culminating in mobility problems often results in a loss of independence, of some variety—a loss of freedom and spontaneity.
The Loss of Freedom and Spontaneity
A loss of being able to spontaneously decide to for a walk when aimlessly sitting around the house; one with there is no final destination in mind but one to see where you will end up. And no longer will be able to navigate long walks with steep hills, or plenty of steps to climb up and down. Now, going out requires careful planning and consideration if symptoms suddenly surface, becoming too disabling, and prohibiting us from continuing any further.
No longer able to go out into the world without the worry of how we are going to that final destination. Or the ability to stay out as long as we want, without the fear of pain or fatigue ruining the spontaneous trip.
"We are no longer able to go out into the world without the worry of how we are going to that final destination. Or the ability to stay out as long as we want, without the fear of pain or fatigue ruining the spontaneous trip." Click To Tweet
No longer can I remember the last time I felt the house on my own. I do know that it has been years. Since then, I’ve had to rely on my parents. Or my carer to drive me to the places that I wish to visit, or relying on a taxi service to take me where I’ve needed to go. FND, and its accompanying symptoms robbing me of the freedom and independence of my previous life; the life I lost when illness claimed me as its victim. Living with a long-term condition can make you feel that you are at the mercy of others.
"FND, and its accompanying symptoms robbing me of the freedom and independence of my previous life; the life I lost when illness claimed me as its victim." Click To TweetFor The Chronically Ill, This Is Our Normal
I know that I have a lot to be grateful for; I’m still here and have much going for me. But, I cannot help but imagine what life would be like if I had never gotten sick. At times, I envisage the life I could have led if FND had never entered my life; the potential I could have realised if not so affected by the debilitating symptoms that I have now considered to be my normal.
"I cannot help but imagine what life would be like if I had never gotten sick. At times, I envisage the life I could have led if FND had never entered my life; the potential I could have realised." Click To TweetGrief and acceptance are not linear, often coming in waves, returning again and again. When experiencing such emotions, it is natural to imagine the what-ifs, or old lives, desperate to return to it—something, which I guess a lot of people are doing as they grieve the losses incurred.
Although, in some ways the losses has not been extensive as those experienced by the chronically ill. Missed holidays and events such as concerts can be rescheduled, for example. Innovative ways to allow people to work from home, or enjoy the latest cinema from the comfort of our sofa are now available to the masses. Technological advances that would have significantly benefited the chronically ill and disabled population, but have previously deemed unnecessary or difficult to implement.
There are published articles of tips on how to stay sane and entertained during the long periods of isolation. Or tips on how to cope with illness, if it were to happen. Things which the chronically ill and disabled have had to navigate own their own.
It Will End For Many, But Will Still Continue For Those of Us With Chronic Illness
But, this pandemic will end, and life will return to normal. But for those of us living with chronic illness, our lives will continue as the same as is now. For isolation, uncertainty and fear are our norms because this is how we live our lives regularly. And when the current social distancing measures end, there I am sure will be much celebration. But for me, it will also generate some anxiety. Before, the pandemic, I had lost self-confidence in going out due to the worsening in my symptoms. And so, there is some anxiety that I will have further problems regarding my confidence when returning to the outside world as I become all too familiar with staying indoors.
I hope that after, the current pandemic ends that the abled body remembers that although they have regained what they had lost, there are many out there who will still experience loss and the grief that accompanies it for the rest of their lives.
