Writing by Zara Saunders // photograph by Yuris Alhumaydy
The experience of chronic illness is unexplainable. There are truly no words to accurately convey the pain, fear and grief which swallow you whole. Chronic illness tends to creep up on you unexpectedly leaving in its wake confusion, loneliness, and self-loathing at your body’s limitations. Suddenly, with no warning your whole world is rotating around doctors’ appointments, tests, and hospital trips. Medical experts can explain your condition; however, the harsh reality and weight of chronic illness is only known by those who bear it.
Chronic illness entered my life when my heart began to race; episodes of palpitations, shortness of breath and dizziness consumed me. I was in my second year of university when my world came crushing down following the discovery of an extra pathway in my heart. I was diagnosed with Wolff-Parkinson-White Syndrome, a condition in which an extra electrical pathway in your heart causes episodes of arrhythmia’s. Nothing could have prepared me for the reality of living with a chronic illness. I began to experience regular episodes of palpitations where my heart would race along with a myriad of other symptoms which impacted upon my daily life.
It is devastating to lose your health. It brings a lonely grief that swallows you whole and is solemnly understood by those without it. Chronic illness touches every aspect of one’s life. You constantly wonder what you did to deserve this. The answer is nothing. Chronic illness does not discriminate. You can be like I was; active, healthy, and young when it sneaks up on you. It’s hard to believe one extra pathway in my heart could cause so much grief. I grieved my ‘old’ life. I grieved the loss of my body’s once full capacity. I grieved the future I hoped for but had been put on hold. I grieved friend’s milestones and the gatherings I missed.
Chronic illness brings with it a crushing loneliness. The simple question of ‘how are you?’ becomes excruciatingly complex. You want to be real and honest with your friends, but you do not want to be defined by your illness, or have the personal details become public knowledge. The constant tension between the “I’m fine” answer or confiding in those around you leaves you feeling alone. Chronic illness is unpredictable, you will have good days and bad days. The unpredictability isolates you. You feel like an imposter or a phony who is neither well nor sick, but caught somewhere between the two. The loneliness can intensify on your good days because people think you are better. It is hard as you know they mean well, but that’s not how chronic illness operates. You may be able to do something today that will be out of the question the next. You begin to feel like a broken record explaining your illness. It consumes your personality as people constantly ask; How is your health going? What are the doctors are doing? Or worse still, with the best of intentions, offering unsolicited “medical” advice.
While I grieved and experienced loss due to my chronic illness, I was able to grab hold of the mundane things many take for granted. I am thankful to be able to still study. I am thankful to have a workplace that were understanding and accommodating. I am grateful for the good health days where I am able experience the abundance of life. I am thankful for my faith keeping me rooted. And I am thankful for my friends who see me for more than my battle with health. My journey with chronic illness, like many others, has been a complex one. I was able to have a surgical procedure to remove the extra pathway. This surgery allowed me to gain my strength and many aspects of my life back. Unfortunately for me, chronic illness rarely appears in singular form, and this reprieve was short lived when illness fiercely and randomly struck me down once again.
These days I battle with my health without a clear diagnosis, which brings its own set of grief, pain, and loneliness as I wait in a perpetual and seemingly endless state of limbo to either get better or receive answers. Yet, in the uncertainty I am learning to grieve when I need and take hold of joy in the little things. My spirit may be a tad battered and bruised but I get up and keep going…