Chronic illness. What do these two loaded words mean?
Lifelong. Most days being too sick to function, yet not ‘sick enough’ to be hospitalised. The common misconception is that if you are facing a serious and debilitating illness, you will be treated as an inpatient in hospital. It is a romanticised fairytale for those with chronic illness, to enter the hospital unwell and leave healthy. In severe pain and staggering with exhaustion you will be told over and over, that if you are “that sick” you “should be in hospital.” What these mean-well-ers do not understand, is that this is the new normal of your life and you cannot spend every day taking up a highly coveted hospital bed.
The medical system is trained to bandaid symptoms, and as someone who is overexposed to doctors’ offices it is likely your body is becoming too sensitive to cope with a heavily medicated life, yet too frail to cope without assistance. You feel terrified from the inside out and are willing to try anything to grasp at the strings of a positive quality of life that always seems just out of reach. You take pills to ease your symptoms, and more pills to stop the side effects. Some days your medication requires more swallowing than your meals. It is a constant cycle and medical merry-go-round you are not enjoying the ride of, yet you are too scared to jump off and be dancing hand-in-hand with your illness. Your illness is like a shadow – forever attached to you and no matter how fast you try to run from it, every morning when the sun rises it will appear again.
You run into people who claim alternative and natural medicine holds the answers for you, yet as soon as you open that door the western medical system writes you off as one of “those people” and becomes reluctant to care for you – blaming the naturopathy treatment for your most recent flare up. You are just desperate for a solution and want to pursue each avenue with support rather than judgement.
Your pain and symptoms are rarely justified, and hypothetical diagnoses come and go if you are ever fortunate enough to receive them. There is an unexplainable feeling when the cause for your pain cannot be identified, when your FBC returns clear and no one can explain the state you are in. Worse, when your results show abnormalities in bold on blood test reports that you stumble across when digging through medical files trying to draw your own conclusions. There was an avenue that time-pressed emergency departments didn’t have the resources or interest to explore, instead telling you that there is “nothing wrong with you”.
When the search for answers turns up dry, you are referred to psychology. Your palpitations must be from anxiety, and black-outs from stress. You break down in tears in the specialist suites because you are told that your latest test results were ‘normal’. You are fighting to hold back the scream that can express how you just want answers. You have to endlessly repeat, explain and defend what you are experiencing. If no one has told you this yet, allow me; normal test results do not mean your symptoms or illness is just “all in your head”. I know that look you get from your doctor, who stares back at you blankly as tears stream down your face. You appeal to every sense of humanity within them, begging them to do anything to save you from the pain you experience day in and day out. They are just as lost for words as you are.
Chronic illness is the uncomfortable middle ground where you would be turned away from the emergency department with more confusion and fewer answers than when you presented. Each time the words, “there is nothing more we can do to help you” solemnly slip from a doctor’s mouth, the crushing feeling returns to your chest and tears begin to burn your eyes. You are too 'well' to be in hospital yet too sick to engage socially, educationally and economically in society. You are alive yet feel too unwell to live.
Chronic illness is losing hope that the medical professionals can enhance your quality of life. Chronic illness is going to sleep each night not knowing the condition you will be in when you wake up. Chronic illness is having to take each moment at a time, as you are never sure what the next moment will hold for your body and mind. Chronic illness is an existential crisis. Chronic illness means management, not treatment. Chronic illness means coping not fighting. You know that the fight is a battle that expends energy you cannot afford to lose. Energy you need to conserve to continue to get out of bed each morning. And if one morning you cannot get out of bed, you continue to conserve every molecule of energy for another hopeful morning when your greatest desire is just having the energy to shower.
Chronic illness is chronic. This illness has been testing you for what feels like a lifetime, yet you have never given up waking up each morning with the hope for a better future. You are likely to have never been acknowledged for the battles you fight each day between your mind and body. That acknowledgement may never come, as it is difficult for anyone to understand the path you have walked and mortality you have faced. Your ability to smile and bring light to those around you gives you a healthy glow. This glow shines brighter than your illness and you are greeted after getting out of hospital with, “wow you are looking so healthy!” when you owe that appearance to your resilience (and usually makeup!).
Don’t be deceived, your mentality shapes your life rather than your life shaping your mentality. You have the power to choose your thoughts, beliefs and emotions, even though you may not have the power to control your illness. Do not give up now.