During my recent foray into revisiting my old posts, I came across this post from five years ago.

In the post, I talk about the importance of acceptance when learning to live with a chronic illness. It also made me reflect on my current decline in some of the symptoms I experience because of FND.

Revisiting this post since some of the #symptoms that I already constantly live with. Although it may be a flare, which is often temporary, there is always that fear it is a sign of a deterioration, leading us to the beginning of the five stages of grief once again #ChronicLife https://t.co/skmwcBaAHx
— Rhiann Johns (@serenebutterfly) September 17, 2018

Once again, the trembling in the legs has worsened.

Significantly worsened in fact.

The Saga of Pain and Trembling Legs

Every day, my legs have felt incredibly unstable and weak, amidst the severe pain that already wracks them. There is a persistent feeling of incredible stiffness and heaviness. A heaviness that makes it feel like I am attempting to walk through thick mud. But, juxtaposed with this heaviness and stiffness is an immeasurable weakness.

A weakness so severe that it continually feels if my legs are going to collapse from under me.

The trembling and this general weakness that exists within my lower limbs is not a new symptom. So, you would think that I would be used to it by now. But when confronted by worsening symptoms; they feel anything but familiar. With worsening symptoms, we are once again thrust back into working through the cycle of grief.

"But when confronted by worsening symptoms; they feel anything but familiar. With worsening symptoms, we are once again thrust back into working through the cycle of grief." Share on X

Directions of Grief — Five Stages of Grief – Denial, Anger, Bargaining, Depression and Acceptance via Shutterstock

Denial. Anger. Bargaining. Depression. These are the key elements that we battle through alongside the fight we face with our symptoms before reaching acceptance.

"We need to battle through denial, anger, bargaining, and depression before reaching acceptance." Share on X

Accepting a ‘New Normal’

But, before we can arrive at acceptance, we must first deal with the psychological fallout that worsening symptoms create. Since the trembling has worsened, it has also significantly affected my mobility. Standing and walking is problematic as the shaking feels incredibly violent. Anxious that at any moment, I will collapse to the ground. As a result, I have lost confidence, particularly when out of the house, the fear of having a fall never far from my mind.

It feels that I am drowning. As though my days are about surviving rather than living. Every day I am tormented by symptoms beyond my control.

"My days are about surviving rather than living…tormented by symptoms beyond my control." Share on X

Symptoms are so severe that I am no longer able to function within the world around me. People assure me of my bravery and resilience in the face of illness. However, it’s during such flares that words such as bravery and resilience cease to have any meaning to me.

The Unpredictability and Isolation of a Chronic Life

Ask anyone living with a chronic illness, and they will tell you how unpredictable life can be. Unpredictability is the very hallmark when living with a chronic condition. Every day we wake up never knowing how the symptoms are going to impact the new day that awaits us. When symptoms worsen, we never know whether it is due to deterioration in our condition, or just due to a flare. And when symptoms do become worse, the fear that it is due to a decline becomes very real. We already had to come to terms with a diagnosis and the new normal that comes with it. And with worsening symptoms, we again need to adapt and find another new normal.

"When symptoms worsen, the fear that it is a decline with our health condition becomes very real." Share on X

The Effects the Physical Has On Our Mental Health

Furthermore, when symptoms do worsen, we can often isolate ourselves. The isolation may be as a result of the symptoms themselves, or because of the emotional consequences, it has on our mental health. I have recently had experiences of isolation. Due to the severity of this recent trembling, it has affected every facet of my life, most notably my mobility. As a result, I have been unable and afraid to go out much, and when I do, I tend to go to familiar places; places where I know where I can quickly sit down if I feel they are going to collapse.

When living with such symptoms, especially when they are invisible, itself also causes isolation. We often hide behind a mask; suppressing our pain and fatigue behind a smile. The pain, fatigue, trembling, and dizziness does not manifest themselves physically. No one can see or understand the torment that our bodies withstand. And that can be incredibly lonely.

"No one can see or understand the torment that our bodies withstand. That can be incredibly lonely." Share on X

By not being truthful about the reality of our current situation, we begin to isolate ourselves further. Recently, I have become quite withdrawn, choosing to turn inward, becoming lost in a descending fog of hopelessness and despair. Stress and feelings of sadness is a consequence of the physical toll that living with illness has on our bodies and minds. Stress, however, can also exacerbate the symptoms, potentially causing a flare or making one much worse.

"By not being truthful about the true nature of our health we are further isolating ourselves." Share on X

Arriving at Acceptance

Reaching acceptance, although the journey is long and arduous, makes coping with chronic illness more manageable, arriving at acceptance, however, is difficult.

For many, it means resignation or giving up.

Acceptance instead is more about learning effective ways of coping with this new reality and quietening negative thoughts and feelings.

Acceptance and having a positive attitude isn’t a cure for chronic illness, but they can help make it easier to overcome the challenges and limitations that we may encounter.

"Acceptance and having a positive attitude isn't a cure for illness, but they can help make it easier to overcome the challenges and limitations that we may encounter." Share on X

One thing I have learned along the way, however, is that achieving acceptance is difficult. When we think we’ve accepted everything about our illnesses, something happens such as worsening symptoms, and once again, we find ourselves back to the start. Much like a revolving door, we often travel round and round the different stages until we locate the exit and reach acceptance.

Perhaps, when living with a chronic illness, there is no such thing as ‘complete’ acceptance. If recent experience has taught me, coming to terms with a chronic illness involves a continuous journey between denial and acceptance, and so many other emotions.

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arriving at harbour after storm — Reaching acceptance can feel like arriving at a safe harbour after a storm

And as I now find myself amidst a torrential storm of pain and trembling, and days spent trying to survive the impending floods.

But, I hope soon that I once again find a safe harbour that is acceptance.

In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’. In the book, she introduced the now famous ‘Five Stages of Grief’. Her theory suggested that there are five stages of adjustment after a loss, which are:

Denial
Anger
Bargaining
Depression
Acceptance

The theory described the five stages of grief concerning the mourning of a loved one. However, these five stages have also been used to describe many areas that involve a loss.

These five stages of grief can also apply to a diagnosis of a chronic illness or the onset of a progressive disability. Mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis. And for the activities that we once enjoyed but which may be prevented by the symptoms of the chronic illness or disability.

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An example of these stages in action can be as follows:

Denial

We immediately are in denial of the new situation and cannot accept that it is true. Regarding chronic illness, we may question the doctor and ask whether he is confident that the diagnosis is correct. A request may be made for further investigations as we cannot accept the diagnosis as fact. We may also not be open to new medications or treatments suggested as that would mean the condition is real.

Anger

Like many others, anger is a normal feeling when living with chronic illness. We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. We are often angry at people around us who are still able to do all the things that we are no longer able to do. Anger is one of the five stages that those living with chronic illness reverts to, especially when symptoms are particularly severe.

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Bargaining

Although anger stays for a while, we eventually progress to the third stage which is bargaining. Often, when living with a chronic illness, we become lost in a world of “What if” and “If Only” statements. We want to return to the life we had before illness, so we attempt to bargain with our bodies.

We promise that we will take all our medications correctly, and keep to a healthy diet in exchange for the condition to disappear. A promise is made to do anything in exchange for a cure and to be able to return to a normal life.

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Depression

As times passes; we slowly realise that bargaining isn’t working. As there is no sign of a cure or a return to our old life we begin to lose hope. Often, we slide into a depression. The depression isn’t a sign of a mental illness however but a response to the loss of our previous life. We turn inward and withdraw from life, and get stuck in a fog of sadness, despair and hopelessness.

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Acceptance

The move into acceptance is a slow and gradual process. To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.

However, this is not a single process. These five stages of grief are linear and one in which we often regress to previous steps. The need to work through them all over again, especially at times when the condition gets worse. As we worsen we return to the first stage of denial and we need to work through all the stages just like we did after the initial diagnosis. As our health deteriorates, we are essentially mourning the loss of another piece of ourselves.

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The importance of acceptance can be brilliantly summed up by a famous quote by Joseph Campbell:

This post is about acceptance – to acknowledge the changes in our situation and declining health. It is not about being completely fine or deliriously happy about the illness or disability. Acceptance is about finally recognising and acknowledging the permanence and reality of life after diagnosis.

To learn to readjust to our new reality we need to embrace the life we have now. Acceptance is not about giving up.

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I thought about the ‘Five Stages of Grief’ recently after a day out with my carer. As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.

Last week, my carer commented on how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more. A reason for this is because I am in the wheelchair, I am not always on edge that my legs will give way, or on the days when the weakness is severe, I am not waiting for my legs to collapse.

However, as I also live with constant dizziness and regular bouts of vertigo and as a result of the continual movement while in the wheelchair, it was challenging for me to use it. So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?

accepting the need of a wheelchair when living with a chronic illness — Accepting the need for the wheelchair has made going out so much easier and more enjoyable

One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair. Perhaps, I have finally moved through these five stages and now accepted my new reality. Before, I became worried not only about the wheelchair’s effect on my vestibular system but also with the judgements of other people. That however no longer is a concern of mine and happy to be in the wheelchair.

Perhaps, it is much easier to live with a new situation when we have reached acceptance. We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon our lives.

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