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Identity Crisis: Am I Defined By Chronic Illness?

The Identity Crisis: Am I Defined By Chronic Illness?

Often chronic illness sneaks into your life, like a thief in the night. It takes everything that once defined us; stealing our identity and imagined futures. For those, like me who have suffered from symptoms associated with illness for most of their life, it is hard not to think of the person I might have been if FND had not become a permanent and prominent part of my life.

When living with a chronic illness; continually feeling the effects of can often makes us wonder “Who am I?”

When living with a chronic illness, we are often told not to let it define us. Advice that may seem constructive and wise, but which often feels that it woefully disregards our experiences of living with a chronic condition.

The Truth Is That Sometimes Chronic Illness Does Define You

Why? Because the truth is, that if living with a chronic illness, then it might define you, becoming an important part of your identity. How can it not when such relentless and disabling symptoms often prevent you from living a ‘normal’ life. Illness and all of its accompanying baggage is not just a small detail of our life story. It becomes a crucial aspect of life.

"The truth is, that if living with a chronic illness, then it might define you. How can it not when such relentless and disabling symptoms often prevent you from living a 'normal' life." Click To Tweet

It seems that illness is nevermore a defining, part of our lives when the symptoms are at their worst. When severe and disabling symptoms surrenders you bedbound, and which everything feels like a monumental struggle. It is during these times when everything that defined us, such as the activities we enjoyed, or the hobbies that meant so much are forgotten and discarded as debilitating symptoms leave us unable to achieve, well anything.

Becoming Lost Within Chronic Illness Itself

These weeks and months of becoming disabled by such severe symptoms, it can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself.  The loss of that which defines you, as well, you.  And the loss of the ability to do those things which make you, you.

Silhouette of woman in dark
During the worst times when living with chronic illness, it can be easy to become lost within it and to begin to see that is all we are. Photo by Kevin Jesus Horacio on Unsplash.
"It can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself.  The loss of that which defines you, as well, you." Click To Tweet

Often, you find yourself no longer being able to do things you once were able to do. Or no longer have the same opportunities as before illness crept it’s way into your life. Suddenly becoming ill, or the sudden deterioration of symptoms can often feel that the person we once were replaced by a weaker and frailer version of ourselves. We no longer feel like the same person we used to be. And so we begin to grieve for that old version of us.

The severity and intensity of illness and subsequently becoming incapacitated, life and we slowly become defined by what’s wrong.

When living with constant and relentless symptoms, it can often feel that life and ourselves become defined by what’s wrong. The quote is taken from the blog post ‘Chronic Illness: A Harbinger of Shame & Guilt

But Chronic Illness Should Not Be The Defining Factor of Your Life

That said, however, chronic illness should not become the defining factor of your identity. Chronic illness and all its baggage is not the only part of you and is not the most crucial part.

"Chronic illness should not become the defining factor of your identity.  It is not the only part of you and is certainly not the most crucial part." Click To Tweet

When diagnosed with a chronic illness, our old identity does not become suddenly erased, nor does a diagnosis become a replacement for our name. Nor does it have to be the first thing you broadcast when being introduced to people. I have since learned the importance of being able to talk about other things apart from your diagnosis. And being able to recognise your own identity beyond that of ‘patient.’

"I have since learned the importance of being able to talk about other things apart from your diagnosis. And being able to recognise your own identity beyond that of 'patient.'" Click To Tweet

So Am I, Or Am I Not My Illness

So, am I, or am I not my illness? Maybe. Maybe not. Indeed, my ongoing struggles as a result of FND is a constant reminder that it is a massive piece of who I am. The continued severe and debilitating symptoms that affect every aspect of my life reminds me of its dominance; stressing that it and its symptoms are often stronger than I am.

I am not the same girl I was before I got sick. Or at least before the symptoms worsened and becoming a very significant part of my everyday life. Sure, I’m still mostly “me” but a different version of who I was before FND impeded my entire life.

"Sure, I'm still mostly "me" but a different version of who I was before FND impeded my entire life." Click To Tweet

Certain qualities become amplified, priorities become reorganised. And how we see the world becomes viewed through a different set of lenses. But illness not only changes who we are as a person but also how we live. Every choice we now make defined by chronic disease and disability.

Redefining Yourself Through Illness and Disability

But although illness starts to define you, and the choices forced upon you with regards to your illness or disability, it is also through them that you can begin to redefine yourself.

We make the most of the times we are feeling relatively well by taking part in activities and interests that distracts us from the pain and other symptoms of chronic illness. Those that help give us an identity beyond that of a patient, or someone as being chronically ill.

Woman taking photograph
But illness and disability do not have to define us; it can be a stepping stone to help redefine us.

Being ill has also redefined the way I look at how I take advantage of what is out there in the world beyond my comfort zone. Due to my condition, and how it affects me, I have become limited to places in the world I can travel, and also the method of transport I can use. But I still go when I am able and have since found a love of cruising, which I may not have found if I was not sick and limited by FND.

How Illness Has Made Me, Me

I would argue that having to live with illness has made me much more emphatic and compassionate. That is not to say those who aren’t living with illness or disabilities cannot be those things, but I know what it feels like to experience struggles and adversities through my personal experiences of being sick.

The experiences I have accrued since living with the permanent effects of living with a neurological disorder has made me a stronger person. Being in constant pain, forced to continually adapt as it refuses to work the way I want it to have made me learn to fight in ways I would never have had if I weren’t ill. It has made me more determined to weather the painful and challenging moments to achieve what I want to do or go to places that make me feel uncomfortable due to unpleasant symptoms associated with FND.

"Being in constant pain, forced to continually adapt as it refuses to work the way I want it to have made me learn to fight in ways I would never have had if I weren't ill." Click To Tweet

I am not my illness. But my illness is a part of me.

I am not my illness. But my illness is a part of me

I have since concluded that I am not my illness. But my condition is a part of me. And a part of me that has shaped me into the person that stands before you today. Certainly, a life without FND and all the baggage that accompanies such a condition means I would have led a very different life without it.

I am never going to experience what it is to be a fully functioning, ‘normal’ human being. Still, the experiences gained from living with chronic illness has helped redefine me, and not always negatively.

It has helped make me, me.

"I am not my illness. But my illness is a part of me. The experiences gained from living with chronic illness has helped redefine me, and not always negatively. It has helped make me, me." Click To Tweet
  • Caz / InvisiblyMe

    “The severity and intensity of illness and subsequently becoming incapacitated, life and we slowly become defined by what’s wrong” – so true, and as you say, when symptoms are at their worst it becomes all consuming. I also think there’s a degree of build up, the more you feel annoyed or regretful or resentful of the person you used to be and the things you can’t do anymore, it builds up. Chronic illness does change things, it inherently changes us and sometimes it does define us to a degree, as much as it sounds better to say “it doesn’t define you!” It’s about trying to work around it, remember the person you are underneath and beyond illness and/or pain, to focus on what you can do and make sure there’s still a life and personality and interests to make you YOU, chronic illness or not.

    Another fantastic post, Rhiann!

    February 2, 2020 at 12:18 pm Reply

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