Actually, my illness does define me

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For many people, illness has a narrative: a clear beginning, middle and end. If we’re lucky, the ending is actually a fresh start where the illness is gone and our hero is returned to normal life, changed but stronger because of their ordeals. In the lives of those with chronic illness, however, those lines are blurred; our descent into illness may have been gradual and there might be no end in sight.

Man sitting on couch (Dermot Conlan/Getty Images)

About three years ago, I remember lying on my couch. I was convinced that I was dying. There was no other reason, I thought, for why I could barely bring myself to stand up and do basic tasks like shower or go the toilet.

At that stage I had been experiencing marked fatigue for well over six months and no doctor could tell me what was wrong. Despite committing myself to a fresh start by seeing a dietician for nutritional advice, deliberately losing weight, and improving other aspects of my health, the unexplained fatigue wouldn’t resolve. I briefly believed that one day soon doctors would find a tumour or pathogen, but only after it was too late to save me.

That catastrophising passed quickly, but I tell you this story to illustrate just how damn sick I felt.

Recently, I heard and bristled at what I have since learned is a common platitude in the wellness-sphere. It goes something like: ‘Your illness doesn't define you.’ Though I appreciate the sentiment — my sickness does not erase the fact that I am a complex individual — it's a platitude that downplays the impact of chronic illness on my life.

Sufferers of chronic illness (particularly invisible chronic illness) often face an uphill battle for empathy; those with factory-standard bodies don't understand why we are so fixated on what ails us. Even medical professionals struggle to interpret our vague symptoms, and many put us in the too hard basket.

 

'I used to subject myself to guilt and shame around my limitations. I believed I was a bad friend, a bad employee, and self-flagellated after decisions that I now realise were not truly choices. I now know that it shouldn't be up to me to change what I cannot.'

 

While our friends and family want to be supportive, most just don't understand the soul-crushing burden of unrelenting sickness. Clumsy attempts at providing emotional support often come out as patronising, or unintentionally minimising our struggle. Saying 'your illness doesn't define you' does exactly that.

I have chronic fatigue syndrome (sometimes called myalgic encephalomyelitis). Its impact is pervasive and, at times, all-consuming; there is no aspect of my life that it does not influence or ‘define’.

In describing chronic fatigue, it's important to make the distinction between chronic fatigue and regular tiredness. The term 'chronic fatigue' is actually quite controversial with many who experience it, as the name frequently leads people to dismiss 'fatigue' as simple sleepiness. With chronic fatigue, sleep is not replenishing, and rest does not resolve the symptoms. Exertion (both physical and mental) leads to disproportionate exhaustion. Hormonal dysregulation, cognitive, and mitochondrial dysfunction are also often present. The seriousness of this condition cannot be downplayed; research has indicated many with chronic fatigue syndrome have a lower quality of life than those with terminal cancers.

While the past few years have seen an improvement in my fatigue management, every decision I make to exert myself must be meticulously calculated lest I exacerbate my condition. When that happens, I find myself back on the couch, feeling like death is coming for me. Subsequently, what were once insignificant decisions — 'Can I go upstairs to get the laundry basket?' or 'Should I shower before bed?' — are now carefully considered.

The practical effects of my illness are wide-ranging. The most obvious is that I am not currently able to work full-time in teaching, the career I trained for and love. The confronting reality is that I may never be able to return to full-time work. This has a ripple-effect for my potential career path, livelihood and financial security. Work was not the sole defining feature of my life, but a lot of my identity is tied up in my role as a teacher.

On a personal level, my fatigue has redefined all of my relationships. Previously an extrovert, I was reduced to a social hermit at my worst. For nearly a year I vanished from the radar of all but the most persistent friends. Fatigue means that I have become a notorious 'flake', though I have fortunately distilled my friendships to mostly include people who understand my limitations and don't take this personally.

While it is a more esoteric point, my spirituality — which was previously a huge part of my life — has also taken a hit. Unlike many saintly figures, I have found no nobility in my suffering. It has become hard to maintain faith in the face of unrelenting, seemingly senseless, sickness.

The uncertainty about whether recovery is possible leaves me, like many people with chronic illness, in a kind of existential limbo. By definition chronic illness may never resolve, so management is the best some can hope for. For others there is a possibility of recovery, but in many chronic conditions the specific causes are multifactorial and poorly understood. This means that the approach of doctors usually involves throwing spaghetti at the wall and seeing what sticks. This takes time and persistence, which is a lot to ask for from people whose resilience is already low.  

Planning for the future, and thus making plans for living a life that is meaningful, is a real challenge. Three years ago, if you had asked me about a five-year plan, I would have been able to give you a general life trajectory. Now I can barely predict what my life will look like in six months.

All that said, I'm luckier than most. After a lot of effort put towards management of my fatigue, I am usually able to work a few days a week and mostly support myself. I also have a family who is both willing and able to assist me during the leaner times. Some with chronic illness have it a lot worse, and are forced to utilise their limited energy fighting a welfare system that is deliberately hostile to its users.

While it might seem defeatist to accept that so much is beyond my control, in a way it is also empowering. I used to subject myself to guilt and shame around my limitations. I believed I was a bad friend, a bad employee, and self-flagellated after decisions that I now realise were not truly choices. I now know that it shouldn't be up to me to change what I cannot.

I realise all of this sounds like a bit of a whinge. My point, however, is not that everything is dreadful. Rather, I would say I have a lot going on in my life that is good and enriching, but nearly everything that could be feasibly described as ‘defining’ me is affected by my illness. My personal relationships, my career, and even my faith have all been subject to radical change in the past three years as a result of my chronic fatigue.

So next time you go to offer a chronically ill friend advice, remember that acknowledging our virtues doesn't necessarily involve minimising our illness. Those of us with chronic illness can be good friends, good colleagues, and good citizens despite being sick, but our illness undeniably shapes how we interface with the world.

 

 

Tim HuttonTim Hutton is a teacher, masters student and freelance writer based in Brisbane. He writes on politics, education, media, societal issues, and the intersection of all of the above. His writing can be found at www.timhutton.com.au

Main image: Man sitting on couch (Dermot Conlan/Getty Images)

Topic tags: Tim Hutton, chronic illness, disability, ableism, chronic fatigue

 

 

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Existing comments

Thanks for the honesty and courage, Tim. My wife has had a chronic illness with crippling physical effects for 40 years, so we hear you. As a health professional I became increasingly pissed off with the vacuous and unrealistic 'don't let the illness define you' and 'internal/external locus of control' and 'self-manage your illness proactively' dogmas of modern therapy. Some people understand what it's like having every moment limited by a body that doesn't work properly, the practical/emotional/spiritual/existential effects, and the chronic grief of knowing it will never get better, but most people only understand the concept of an acute illness, which gets better. The human spirit is surprisingly resilient, but it doesn't take much to scrape the scab off the sore.
Peter Schulz | 01 October 2020


You have hit the nail on the head, Tim. I have had chronic fatigue for over 40 years and like you, was a teacher. It was so hard being regarded by my peers and family a as a malingerer or just too lazy to move out of my own way has been very hard to live with. As a person living on my own, I find it impossible to maintain a routine of daily living - sometimes even the washing sits in the machine for a couple of days before it makes its way to the dryer. I know my couch is killing me, but it seems there is little alternative as a day's activity can set me back on another downward spiral. My brain is similarly affected and fatigue clouds my thinking processes as well as disrupting connections to my feet so that I have frequent falls and trips. Congratulations on your article - it was articulate and lacked self pity; just stated what life is like for your fellow cf sufferers. Thank you.
Judith | 02 October 2020


Not experiencing any chronic illness, Tim, I do not offer advice. No advice, but a request - please keep on writing. I enjoy your work.
Ian Fraser | 02 October 2020


Thank you, Tim. I resonate personally with everything you say here. (Though the line about the laundry basket resonated most sharply)! Professionals blame us (‘Your body is carrying too much weight” and friends patronise us ‘ But you’re still able to ring people and that’s very important’. I’m grateful for the kindness of both, but I’m still unpleasantly resentful of the loss of my fairly simple pleasures, like visiting friends with steps to their houses. Your article, however, demonstrated that you still have meaning in your life, and it’s a meaning of service to others. Thank you for the encouragement!
Joan Seymour | 02 October 2020


Interesting, suffering from a chronic illness. I still have prostatitis, a chronic inflammation of the prostate, but it is, after 40 years, finally under control. What a relief! I hope, one day, they will find a cure for chronic fatigue syndrome. Prostatitis certainly screwed up my life.
Edward Fido | 05 October 2020


Invisible illness, invisible disability - your courage in writing this is admirable; helpful too to myself and other sufferers of hidden conditions. It is only our vigilance that keeps us as well as possible in the circumstances- sometimes inviting unhelpful comments from the uninformed. Thank you for your openness.
Cecile Yazbek | 06 October 2020


Indeed, Tim; far from being an illness it has a flip side that gifts and embellishes! Witness the dark Southern Gothic genre of Flannery O'Connor, that superb American writer whose novels and stories intertwine her experience of a lifelong medical condition with luminous insight into human nature, its foibles as well as 'magnificences'.
Michael Leonard FURTADO | 18 October 2020


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