My invisible pain by Jane Giudice
Persons with fibromyalgia are often met with scepticism, says Jane Giudice, who was diagnosed with the condition. But flexible hours at work are necessary for those with an invisible disability
I was born in 1963 and, for the past 39 years, I have learnt to live and cope with all the symptoms classically related to fibromyalgia, namely widespread pain, fatigue, cognitive difficulties, migraine and jaw pain.
At the age of 17, I started to experience pain in the four quadrants of my body. Fibromyalgia may affect the way your brain interprets pain signals, known as central pain sensitization. It causes your nervous system to become in a constant state of hyperactivity, which creates a lower threshold for experiencing pain. Unlike arthritis, in which pain occurs in specific joints, the pain that fibro patients experience is more in the muscles. Many a professional doctor, even nowadays, would come to conclude that fibromyalgia manifests itself because of psychological or emotional instabilities. So what comes first: the chicken or the egg? Myalgia or emotional distress?
My parents sought professional advice from every renowned doctor and, despite several medical and clinical tests, the doctors could never diagnose my pain. Some used to say it is growing pains, others would say I needed to learn how to walk, others blamed my posture.
Over the course of the years, I learnt to embrace my invisible companion, pain, and carried it wherever I would go, as one would carry an extra limb. I recall clearly, even after I got married, the look in the professionals’ eyes gazing at my husband’s, as if to say that I am a lunatic, my pain was imaginary.
I was faced with a decision to make towards my outlook to life. I chose then, as I still do today, to have a positive approach, even if it means that mentally, emotionally and physically, I have to continue pressing forward. It was only some 10 to 12 years ago that a renowned Maltese rheumatologist clinically diagnosed me as a fibromyalgia patient.
Despite everything, my two pregnancies went well and, with the help of my husband and family I managed to raise our children as an able-bodied person would normally do. I juggled between family life, working 40 hours a week, producing and presenting a radio programme for many years, and forming part of a TV production team and managing my pain flare-ups by regularly attending hydrotherapy classes.
I kept myself occupied, I adapted my lifestyle to the spoon therapy theory. There were instances when my husband, who naturally knows me best, would see pain in my eyes and body language and he would remind me that perhaps it was time to consider leaving work so I could rest more. I need to be productive and for the sake of my sanity I needed to continue to work. Even if every morning I would wake up feeling crushed, unable to walk straight, groggy, unable to speak, I would still head to the shower to get myself ready and presentable for a day’s work. This is who I wanted to be – a warrior who battles constantly.
For patients with an invisible disability, flexible hours at work are indeed necessary, both in the public and private sector. Understanding this is the greatest ‘gift’ that those not afflicted with chronic illness can give to others.