Introduction

‘Chronic illness shatters our biography.’ These are the most poignant words that I have seen posted on social media since I joined X, (formerly Twitter.) Living with chronic illness changes us beyond measure. Most of our energy is spent coping with and managing pain. This slowly chips away at our identity and sense of who we are. This post discusses the ways in which chronic illness erodes our identity. It also explores how we can find positivity and meaning through our new identity, that emerges.

Our identity is who we are in our exterior selves; the part of ourselves that we project out to the world. Our identity can comprise of the job we do/our profession, our financial status, our marital status, the kind of home we live in, and the clothes we wear. Identity is the colour and texture of the bricks that make up our metaphoric house. Our identity is how people see us, and from which they form assumptions about our persona. This is why our identity feels like such a core part of who we are.

Loss & Grief

Grief is an inescapable part of living with chronic illness, (invisible illness or apparent) because there are many losses that we face. There is a loss to one’s quality of life; we cannot do the things that we used to enjoy doing. There is a loss of career for many. Some people cannot do the job that they used to do. With the loss of one’s vocation can come a loss of self-esteem. We are heavily defined by what ‘we do’ in the world, and with this loss of career can come a real splintering of our confidence.

Our self-worth collapses, as we question our value in society, to our family, friends, and even to ourselves.[1]

As we endure living with chronic illness, we can become less driven and ambitious, and with that can come an inability to see a future for ourselves. Living with chronic illness also involves the loss of relationships; some do not have the patience to stand by a person living with enduring pain, so some relationships can sadly die. All of these losses comprise the shattering of our identity.

Chronic Illness has gnawed away at my self-identity, self-esteem, and self-worth. A single diagnosis – antiphospholipid syndrome was an immediate confiscation of my sporty, tomboyish, tough girl persona.[2]

Self-Acceptance

It takes an enormous dose of self-compassion to allow oneself to grieve for the person we were before chronic illness made an appearance in our lives. We often associate grief with the death of a loved one, so it can feel indulgent to allow ourselves to grieve the loss of our identity. It was only on my fiftieth birthday, that I allowed myself to acknowledge that things have changed irreparably. I couldn’t even look at it before then. That moment was liberating, because the realisation brought with it a dose of self-acceptance. I am not the same as I was before my facial pain began, and that is OK. Finding self-acceptance can be tough, especially when we look and feel different to the person we once were. But with acceptance, comes relief and freedom.

There is a sense of peace that settles in your being, when you let things go and let things be [3]

A New Dawn

With every death comes a birth, and whilst chronic illness may steal our identity, a new one does slowly emerge. I can’t claim to have found my new identity. I am still coming to terms with the loss of who I was before my facial pain began in 2013. But I can recognise new qualities that I have inherited. These qualities are compassion and resilience.

Since my chronic illness began, I am not so dismissive of others, particularly those who are vulnerable. I write my blog at my local library. There are two men who use the library as a refuge. One is an alcoholic, the other visibly struggles with his relationship with himself and the world. Before suffering with a chronic illness, I would have dismissed these lads as rogues, but over the last six months, I have spent time getting to know them.

Patience & Compassion

One of the lads loves eighties music. In my breaks, we sit on the bench outside, and sing along to tunes on my Spotify playlist; mainly The Human League and Fine Young Cannibals. We talk. Many folks in the community dismiss him because he looks shabby, but under his reddened cheeks and his beer-smelling breath, I have found a deep thinking, kind person, who before becoming ill, I would never have spoken to. I am glad to be better able to find humanity in those whose true qualities are hidden under a rough exterior. It may be a subtle trait to have acquired, but this lad appreciates it. ‘I love you to bits, Phillip,’ he says. (He calls me Phillip, because he can’t say Felicia.)

Whilst my emerging identity may be more tired and less ambitious, these qualities of patience, compassion, and generosity towards others, are qualities that I am glad to have bequeathed. I also have a stronger alignment with my core values. Truth, integrity and kindness were always important to me, but now they are at the forefront of my value system. So, in the shedding of our former selves, we must look for the value in the new self that emerges, even if it is a quieter version of the person we once were.

Quaker Beliefs

These losses that comprise the shattering of our identity, are external. They are things that we place value on from the outside of who we are. Whilst not a devout worshipper or believer in God, I have found inspiration from Quaker beliefs over the years. ‘At the centre of the Quaker faith lies the concept of the inner light. This principle states that in every human soul, there is implanted a certain element of God’s own spirit and divine energy.’[4] The spiritual discipline of Quakerism allows for a place ‘of quiet where we clear our systems, and are more open to one another and to compassion for ourselves. Whilst there is a deep inner self, there is that of God in each of us. There is something bigger than me, some bigger reality, some reality that encompasses all of us.’[5]

I draw on these principles as an important reminder that our soul or spirit is still alive and intact, even if chronic illness shatters our identity. Our spirit is a never-ending source of strength to draw from, and even though our lives may have changed beyond measure externally, we can still find resource and inspiration internally.

A Chronic Voice

Sheryl Chan is the founder and author of A chronic Voice, a website and blog that is dedicated to raising awareness about the multi-faceted dimensions of living with chronic illness. She is a highly respected voice in the chronic illness community. Sheryl wrote a blog post, entitled What Never-Ending Pain Reveals to You. Her post woke me up to the silver lining in the cloud of living with a chronic illness.

‘The biggest realisation that dawned on me,’ she says, ‘is how fragile human beings truly are. There is a subtle arrogance when one possesses a body that is free of ailments. You feel invincible; that as long as you have enough willpower, you can conquer the world. This arrogance becomes a norm that permeates into every aspect of our lives. When you live with never-ending chronic pain, you come face to face with your mortality on a daily basis. You realise how little it takes to break the human body; yet you also realise how much life there is in one single breath. Chronic pain forces me to examine my mortality such that I can live with more purpose.’[6]

Small Moments

Sheryl’s words hone in on the fact that whilst having a chronic illness accentuates one’s fragility, it also pushes us to find life in small moments. These moments may be as simple as appreciating orange roses in full bloom, enjoying the sound of a child laughing, or relishing the taste of a luscious Greek salad. Whilst these moments may not be glitzy, they are still meaningful, and they are available to us if we allow them to touch us. Illness can definitely push us to live with more purpose. Since I started my blog a year ago, I have written 60k words. So, fragile though we may now be, it is still possible to find meaning within our limitations.

Having a healthy sense of self is to understand that every human being has inherent value, no matter who they are, or where they come from.

Sheryl Chan; A Chronic Voice.

A Chinese Idiom

I want to end this post with the Chinese idiom for crisis. A Transpersonal psychotherapist taught me this idiom when I was in my early twenties. The idiom has two characters. The upper character means danger, and the lower one means opportunity, or a crucial inflection point when something begins to change.

The danger with chronic illness is that we give up. We stop trying. These dangers bring apathy, depression and a sense of alienation. Some with life-limiting illnesses do choose Euthanasia. Some end their lives themselves. All of these dangers have been lurking during my11-year period of living with facial pain. There have been weeks and months when I have come close to giving up, because living with acute pain has felt too hard. But every morning that I wake up, I try and push the compass towards opportunity. I ask myself, ‘where is the opportunity in this? What change point is possible for me?’

I haven’t found the answer. However, I am certain that there is an opportunity in chronic illness. Maybe it is about prioritising our values and finding purpose in an alternative way. Perhaps it is an opportunity to discover meaning in small moments and to become more compassionate towards ourselves and others. Finding the opportunity in chronic illness is an ongoing enquiry for me. I keep asking the question. Maybe you can to?

It is worth remembering that the greatest gain in terms of wisdom and inner strength is often that of greatest difficulty.

Dalai Lama

Foot Notes

[1] Chan S; Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth, June 13^th, 2022, www.achronicvoice.com

[2] Quotation is taken from the same source as footnote 1.

[3] Quotation is taken from the same source as footnote 1.

[4] Weening H; Meeting the Spirit – An Introduction to Quaker Beliefs and Practices, 1995.

[5] Quaker Speak: Quaker Spiritual Disciplines, 2016.

[6] Chan S; What Never Ending Pain Reveals To You, October, 2016, www.achronicvoice.com

Photo Credits; Ansfoto, JaneB13, Congerdesign and Geralt on Pixabay. Dawid Zawila, Kazuend, Mike Labrum, Gordie Jackson and Giulia Bertelli on Unsplash. Pixabay and Miriam Espacio on Pexels. The photo of Sheryl Chan is copyrighted © to Sheryl Chan, 2024. It is not licensable. Sheryl granted me permission to use the photo for the purposes of this blog post only.