I have consistently struggled with my identity since I first became ill and lost the ability to do so many of the things that I considered to make up who I was: fatigue made socialising difficult, brain fog made it hard to read and write, pain affected my mood, and paralysis meant I could no longer walk (let alone run). Over time, some of those issues have been reduced, some ebb and flow from day to day, whilst others have remained unchanged. When barriers are put up to aspects of your life you had previously taken for granted – that you had relied upon – it becomes very easy to see only walls: to focus on what you’ve lost. Accepting – and believing – that I am still the same person I was before, that I still had my identity, that I was not my illness, was a steep (and often painful) learning curve. So, when there is so much more to me than my illness, why write about being sick?
No matter who I am, or what else I do, living with chronic illness has made it necessary to adjust the way I live in order to push forwards. I have had to make changes to my life, to change the way I do things, in order to get anything done at all: to move forwards, to achieve the things I still want to achieve, to be happy. To have any hope of finding fulfilment in these areas of my life I had to adjust to accommodate the fact that by body no longer worked the way it once did. The way I parent, the way I love, the way I work, and so much more, have all been adjusted to allow me to get the most out of every aspect of my life.
After I first became ill I was determined to plough on regardless, to continue to live as I had always done: I didn’t want to adapt. I saw adjustment as ‘giving in’ to my illness. In reality, attempting to live as I had prior to becoming ill inhibited and limited me far more that any acceptance and change ever could. Being realistic and working with the resources I have available to me has helped me far more than stubbornly digging my heels in (something I am very prone to doing) ever could. That is what I want to share; that is why I want – no, need – to write about being sick.
Chronic illness is, by its very nature, isolating – both physically and emotionally. Chronic pain, relentless fatigue, or any multitude of ailments may force someone to physically withdraw; while the emotional isolation of feeling alone in your experience can be overwhelming. But we are not alone in this journey. We don’t have to learn how to adjust and live with our illnesses on our own. We can talk. We can learn from the experiences of others. We can share our stories. We can help each other: that is why I want to write about being sick.
I am not my illness, but it is a part of me: it does affect my life, and to say that it doesn’t would be – to put it kindly – disingenuous and – to put it honestly – a lie. But, there are things I have learned, things that I wish someone had said to me when I received my first diagnosis and my world was turned upside down: so I am going to say them. And I am lucky enough to know some incredible people who are living – and kicking ass – as they live with chronic illness: I want to share their stories, too.
I’m writing about being sick because it is only by telling our stories that someone suffering might realise they are not the only one feeling that way. It is only by sharing our experiences that people who aren’t ill might begin to understand what it is like to live with a chronic illness. It is only by sharing things we have learned that we can help each other, not only to live, but to grow and thrive alongside our chronic illness.
I write about being sick because words are the sledgehammer I use to knock down the barriers erected by my illness.
I write about being sick because I hope that, by talking and sharing, others will be able to knock down the walls put up by theirs.