Think the battle is over after cancer? What happens when you're struck by Chronic Fatigue Syndrome right after? The writer wishes to remain anonymous as she bares her heart into this post
Four days ago I realised that I had met the person I will spend the rest of my life with. It came completely out of the blue and hit me like a tidal wave. Sleep since then has been erratic and my usually strict routine has fallen apart at the seams. Consequently, I am now facing a fatigue flare-up like I’ve never faced before. My body is racked with pain and muscle tension, I’m losing even more weight and I’m struggling to do even the simplest of daily tasks. Even just sitting up in bed is taking all of my strength. To all intents and purposes, it looks very much like finding love is spelling disaster for my precarious health-situation. The fear-dominated part of my brain is desperately trying to persuade me to walk away from this romantic entanglement while I still can. The logic behind this is very convincing: love = pain (physical, emotional, existential) and as someone already living with a pretty intolerable amount of pain in my life then why on earth would I choose to add any extra? The answer is simple: it is not a choice. I have had to accept that on this one I’m not in the driving seat. I try to control most things, which is common for chronically-ill folks; micro-managing each and every potentially exhausting or stressful situation so that it impacts as little as possible on our health is integral to survival.
Four years ago (almost to the date) I realised that I was seriously unwell, and was soon after diagnosed with stage III b Hodgkin’s Lymphoma. I underwent six months of chemotherapy which was thought to have brought about a remission, only to find out three months later that one of the tumours had returned. This meant facing three months of intensive, high-dose chemotherapy followed by a stem-cell transplant, all rounded off with three weeks of daily radiotherapy to seal the deal. As you can probably imagine, the aftereffects of such gruelling regime are pretty wide-ranging and can persist for a long time, some of them permanently. Which brings me to my current situation… Having recently embarked on a full-time Masters course in a new City, despite little improvement in my fatigue and chronic pain — which became a significant problem and meant having to stop work almost eighteen months ago (a sort of delayed reaction after all the treatment), I am continuing to struggle with low energy and increasingly painful joints as well as a whole host of other untreatable symptoms. I came here in the hope that by pursuing my academic/professional dream of working to promote wellbeing in the context of art galleries, I would be able to overcome the debilitating state of ill-health which had come to dominate my entire life and seriously impinge on my creative identity.
With the stress of trying to keep up with my studies, navigating unchartered intellectual territory as well as getting to grips with my new geographical location and new living situation, I couldn’t possibly imagine having any other challenges to contend with… Over the past few days, as I’ve wrestled with the possibility of accepting the idea of love at a time when I barely have enough energy to care about myself let anyone else, it’s become increasingly apparent that if I am ever going to achieve happiness in this life I am going to have to learn to be in love with chronic illness. Not just in love with another person whilst managing persistent pain and fatigue and all that comes with it, but in love with the actual experience of being chronically ill — I realised that the two concepts are inseparable, and being able to embrace both is the key to respecting my health-needs whilst at the same time embracing the miracle of an enduring romantic relationship. Perverse as it sounds, I have, at moments, found it possible to not only accept illness as part of my life, but even view it positively as integral to my spiritual growth and attainment of true happiness.
For the first time, since my initial cancer diagnosis four years ago, I have reached a point where I am no longer ashamed of my ill-health or the accompanying physical limitations. I have made peace with the fact that walking is incredibly painful and after only a few steps I am so worn out that my heart pounds and my head throbs and I start to feel faint and nauseous; I have accepted that I can no longer drink alcohol, or stay up late or perform at open mic nights; I no longer apologise when I need to ask for help; I finally feel that I am entitled to the benefits I receive and the motability car that enables me to attend lectures and doctor’s appointments. I had successfully assimilated this aspect of my identity, which can exist alongside other aspects of my personhood, such as my passion for music, contemporary art and my Buddhist practice to name but a few.
At least I thought I had.
As I write this it’s becoming increasingly apparent that the sense of self I felt I was steadily building up is looking shakier by the second. When something “good” happens; when you meet someone who accepts and adores every part of you, it soon exposes all those inadequacies you had been trying so desperately to hide from yourself. Whilst I am fully aware that love can flourish under the most trying circumstances, and have the happily married friends (some of whom are chronically ill) to prove it, there persists inside of me this notion that somehow I am unlovable whilst I carry all these physical and emotional complexities. It’s as if I want to protect him from the darkness of my daily reality, I want to spare him from the torment which I deem unbearable for anyone but myself to even conceive of, let alone experience first-hand. There are times, like today, when it feels like an insurmountable challenge to align my heart with another’s when I have to spend 95% of my time alone in my room to ensure that I get enough rest. Then there are other moments during which my mind expands and the sheer excitement of this new adventure carries my imagination up and beyond my chronic ill-health so that I am able suddenly to perceive that in matters of the heart there are no rules and, more importantly, no expectations. That’s the incredible thing about love — it’s the ultimate freedom from perceived impossibilities. Somehow, we will find a way. Trust is all I have to keep me hopeful — a state of being which is surely bound to benefit my health as well as my heart? Well, there’s only one way to find out…!