Ill At Ease #TBofBTT

They call it ‘malaise’, which is defined as a general feeling of discomfort, illness, or lack of well-being. And it’s a symptom of a variety of conditions, including hypothyroidism and metabolic syndrome (PCOS, Syndrome X), which are amongst those from which I suffer.

It’s a French word, which you might translate as ‘ill-at-ease’. Words, you see, are my thing. I’m fascinated by etymology and I’ve been working on expanding my vocabulary since my dictionary-reading childhood. (Yes, really, I used to read the dictionary. On the bus en route to school every day, in the days before I had any inkling of how things were going to turn out for me.)

And yet, I lack the words to express what ‘malaise’ feels like to me.

I could try and tell you about the nausea, which can be so profound that it bypasses the whole notion of vomiting and goes straight to a desperate desire to be deeply unconscious. I could try to describe the exhaustion that has led me, on some days, to get out of bed at around ten, eat brunch and go back to bed around two, get up for some tea at five and be back in bed for eight; days when I do almost nothing but sleep. I could try and put into words the ghastly, hideous feeling of being terribly ill - a sense that I equate to one of being poisoned although, as far as I know, I have never yet been.

Even then, unless like me you are chronically sick, you probably wouldn’t understand. Even if you were able to see how pale I am, often sweaty and clammy, lumbering in my movements and occasionally in my speech. Even if you were to bear witness to the way my hands sometimes shake or the changes in my breathing when I try to quell the sick feeling by sheer force of will and an excess of oxygen.

I can, with greater authority, tell you what other people think ‘malaise’ means. I’ve heard all of the following - sometimes from doctors, sometimes from acquaintances - over the years:

“Tired all the time? You just need to lose some weight; get some exercise.” This was said to me at a time long gone when, fighting desperately for my health, I was running three miles every day, unable to control my weight gain even so. It’s been said to me repeatedly ever since.

“Are you sure you’re not pregnant?” Accompanied by a sneaky casting of the eye over my pendulous abdomen, one consequence of hyperinsulinemia. My hysterectomy was performed in 2005 when I was just 35 years old. So, yes, I’m fairly certain I’m not pregnant.

“Everybody gets tired.” Sneer, sniff. “You’d be as tired as me if you had a job.” I have several jobs. I care for four children and I run a household. I help my husband run his business and I am trying to build my career as a writer. You wouldn’t believe how hard I work, whenever my symptoms allow me to, taking advantage of the fact that, for me, writing is an escape (from the chronic pain I suffer following a botched operation) and a catharsis.

“It’s just the menopause. You’re no different from any other woman your age.” Really? The menopause usually starts when a woman is in her late forties or early fifties and some ovarian function remains even after that. I’m forty-one, I have no ovaries, and I can’t tolerate HRT. I’m not experiencing menopause; I’m going through the meno-sudden-standstill. And it is, believe me, a lot more cruel and unusual than nature’s gradual decline.

“It’s all in your head. You need to see a psychiatrist. Take antidepressants and you’ll be fine.” This is my favourite. Over many years of psychiatric treatment, my doctors and I have figured out that antidepressants do not improve my health, they jeopardise it. Not only do I not function at all when taking them, but I don’t care that I’m not functioning. Active therapies are my salvation - writing; singing; talking to a counsellor; hugging my kids as tight as I can.

And finally: “You’re so fat. What do you expect?” I expect respect as a fellow member of the human race. I expect compassion. I expect credence. These things are more common than I once feared but are sadly less ubiquitous for me than a healthy person might expect.

So, you see, ‘malaise’, to me, is more than the word doctors use to describe this nebulous, indescribable - yet potent - symptom that many, if not all, of the chronically sick endure. To me, the word is representative of the scepticism and contempt with which my attempts to explicate my symptoms are often greeted.
The willingness of many people to dismiss and disparage what is, for me, one of the worst aspects of my ill health - it is this attitude that puts me truly ill-at-ease.

Catherine Hughes - www.catherinegracehughes.com