4 Downsides (and Bright Sides) of My Illness

As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on some of my worst experiences of living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), I want to highlight the empowering, edifying, and downright funny aspects of life as a spoonie.

1. Downside: I’ve had my dignity stripped from me by being showered by nurses and having them inspect my everything — from the toilet bowl to sanitary pads to the food left on my plate. Nothing will take away the memory of having a nurse prod and and poke at my business in the toilet bowl, nodding approvingly.

Silver lining: Hey, with no dignity left, I have nothing to fear! Public nudity? No problem! Clothing malfunction? That’s a laugh. Even the most uncomfortable of doctor’s tests is a breeze now. The most painful procedures are nothing compared to the awkwardness of having a cannula inexpertly inserted, or a tube put down your throat.

2. Downside: “True friends are like diamonds, precious and rare, fake friends are like autumn leaves, found everywhere.” As trite as this quote seems, it perfectly illustrates the nature of friendship when you have a chronic illness. Friends slip away at an alarming rate when you are sick: plenty are shed at first sight of a diagnosis, others endure a bit longer but eventually become weary of being friends with someone who is always ill. Nothing quite matches the heartbreak of unanswered messages, lonely days and nights, and the memories of those who no longer wish to be in your life.

Silver lining: Who, at the tender age of 26, can say that all their friends are true? I often think that my struggling is worth it, merely for the fact that all my false friends are long gone. Those who remain are true friends, who wipe away my tears, celebrate my triumphs, and understand that I can’t do things most able-bodied people can. Their number may be few, but the joy they bring to my life is unquantifiable.

3. Downside: Today, my biggest challenge was having a shower. Undressing, standing, feeling the water on my skin: they all drain me of precious energy. Washing my hair means struggling to lift my arms above my head and hoping I don’t faint from the effort. Once I dry myself off and dress again, I am wrecked. They sure aren’t joking about the “fatigue” part of chronic fatigue syndrome! Everyday tasks become mountainous obstacles, and actions able bodied people could perform without thinking – opening a jar of jam, putting socks on – are complex challenges requiring an extraordinary power of the will.

Silver lining: Because this illness requires so much of me just to perform the simplest tasks, my conception of “tired” before becoming ill has been thrown out the window. Healthy me would toss and turn in bed due to insomnia, sometimes going days without a wink of sleep. I could barely function on no sleep before, but now? Lack of sleep is no problem! A bad virus left me shivering and shaking on the couch for a week, and bemoaning my fate. Those symptoms are now part of my “good days” and something for which I am incredibly grateful! I even yearn for the good old days of having only glandular fever, and not the complex, neurological disease which now consumes my body. We spoonies are stronger than anyone thinks.

4. Downside: I am facing the abyss. Trying to make sense of what has happened to me, the pain I have experienced, is too much for my feeble mind to handle. My eyes stare at the prayer on my phone, my lips recite it over and over again, but even my faith can’t explain why life is just so awful for not only myself, but so many others who are struggling. Tears well in my eyes. Sometimes, I think, I wish I could go back to how I was before — ignorant of what suffering meant, healthy, able-bodied and guileless.

Silver lining: Living a charmed, healthy life, it can be near impossible to understand just how terrible life can be. As hard as I tried to be empathetic to the sufferings of others, I couldn’t possibly understand what they were going through until I experienced a life-shattering moment myself. My psychologist calls this “the moment you realize the world is not safe,” and although it has hurt me more than I can say, it has also made me more understanding to those who have experienced that same moment.

I still recall meeting a school friend at the train station in our nearest capital city, years before my illness. She told me she had just visited her dad in the hospital, as he had leukemia. After our brief conversation ended, I rejoined my mother, sister and friends at the other end of the platform, thinking nothing of her troubles. In my mind’s eye, I can still see that girl, standing alone at the other end of the platform, facing a four-hour train trip home with only her thoughts as company. It literally never occurred to me that she may want companionship in her most difficult of times. She was fighting a battle that healthy me couldn’t possibly hope to understand.

The sick me would never have left that girl alone. And I have made it my mission to reach out to as many of those in pain as possible. Some of my best friends are those who I’ve met in hospital and through chronic illness communities. I may have to struggle, and so may they, but we will not struggle alone.

As I come to accept that this illness may be a lifelong companion, I also have to accept the experiences it has brought me, good and bad. I hope other chronic illness warriors can share their own stories and lessons, and cling to the good in a life that often seems uncertain and painful. For though chronic illness has changed me, the new, sick me is a far more understanding, kind and strong person than I ever was before.