Ironically, due to chronic illness, it has taken me several months to finish this blog. Waking up every morning with a chronic illness is like being trapped in a continual cycle. There are several stages within this loop that are akin to grief. It is mourning the loss of your health and it is completely normal to be devastated – a chronic illness has such an impact on your life.

They say that grief changes shape but never ends. This is true of chronic illness as it is with death. The repetitive cycle of the 5 stages of grief are:

• Denial – that you have the illness or pain, or that it is not that bad;
• Anger – that you have been dealt this card and have won the chronic illness lottery;
• Bargaining – starting to make deals with yourself (or a higher being if you believe as such) about the illness;
• Depression – the emotional toll that chronic illness has;
• Acceptance – accepting the condition and looking at coping strategies to help.

Like any form of grief – the stages are interchangeable and can be repeated. Grief is overwhelming and seems to be no escape. It is common to often feel helpless in the face of grief. It is combined with a perpetual fear – a fear of physical pain, the emotional or mental toll, and the social and financial impacts.

Physical

The obvious observation is the immense physical toll that chronic illnesses can have on the body. Pain can also impact sleep – either getting to sleep, achieving REM and/or staying asleep. All of these canlead to lack of concentration, and fatigue.

Due to potential lack of movement, as well as any pain that may be experienced, there may also be changes in heart rate and blood pressure, but also stiff joints due to lack of movement and potential weight gain. These could all potentiallylead to other conditions or health concerns. 

Mental

Many have heard of the spoon theory – an analogy to explain how energy is exerted for certain tasks when you experience a chronic illness. This is true of both physical and mental energy. It takes a lot of mental energy to deal with pain – there are clearly evidenced links with physical pain and mental illness such as depression and anxiety. There may be days when there is no pain. However, no pain days are rarely a break. Individuals are often in a state of limbo, living in fear by wondering when the pain may return. 

Social

The social impact of chronic illness is 2-fold. On one hand, you may fear going out due to symptoms or flare ups that may happen. On the other hand, you may feel that people exclude you from social situations due to your health. It really feels like a double edged sword and that you feel punished for prioritising your health. Social interactions may feel like they take a back-seat to your condition meaning that you find it difficult to accept invitations that come your way. It may also be coupled with a fear of rejection from others. Friends and family may be supportive but they may feel overwhelmed on how to support you.

Emotional

There are often daily reminders of what has been lost – the ‘before’ times. What it was like to not experience these symptoms or have them dictate your life. Another is that the diagnosis may make you wonder what would have happened had you known about it earlier, could additional support have shaped your life differently where you didn’t have to struggle. Now you may find that you have different priorities and that you are losing part of your identity as you can’t manage things that you enjoyed before your diagnosis. This may impact the way you see yourself and how you think others may see you. 

Financial

There are several financial impacts to consider when it comes to chronic illness. It may be that you incur additional costs to help manage your symptoms. For example, alternative treatments such as acupuncture, massage, and diet changes. Career possibilities may have disappeared in front of you because you are unable to work due to your health. This may have resulted in low income or receiving benefits.

All these losses become multiple and repetitive. I began writing this blog when I was the owner of one disability – I now have another diagnosis which adds to the collection, but it also starts the cycle of grief all over again. For me, this diagnosis has made me look back at signs that my body was not ok. I also experienced intense guilt – did I do something to cause this? Ultimately, after being put through the spin cycle of emotions I made a decision that I want to try and move forward. I found that it can be helpful to focus on the dual process model (DPN) in grief.

Dual Process Model (DPN)

This is often split into 2 categories: loss-oriented stressors (focus on the loss and living with the symptoms), and restoration stressors (how to manage your new life and how to cope). Essentially, it is important to acknowledge the loss, to sit with it and feel it. But then, to look at moving forward and how that can be achieved.

Moving Forward

It is important to look at this from a problem-solving point of view. After acknowledging the loss, the focus needs to shift to what can be rather than what has been lost. This will assist in building a new life structured around a new routine. There will be a new normal, potentially with new interests to replace the old. Congratulate yourself for taking the time to rest and look after yourself. Self care can be a difficult practice to accept and master so this is worth acknowledging too. 

Hold on to these feelings of loss like passing clouds, study them and let them pass you by. I know this practice is easier said than done but gets easier with time. 

It is a practice in managing your life to cope – leaning into these life changes and embracing them. Distracting techniques can also be beneficial if you are feeling overwhelmed and is a genuine coping strategy.

When you feel able to, it can be beneficial to connect with others. Reaching out to friends, family or colleagues when able is important for building meaningful connections and sharing experiences. It may also be helpful to reach out and help others as this shifts the attention from yourself and may have a beneficial impact on your psyche.

A river only flows in one direction, we may not be able to go back upstream but we can go with the flow of the river and be carried downstream to another part of the riverbank, to create a new ‘normal’.

Written by Katie Ingram

Blogger @Poemstellium

Instagram: @katieingramauthor