It’s a subtle, insidious and painful condition that mimics symptoms of other diseases. It typically strikes women. Josianne Facchetti is one of five million sufferers worldwide living with SLE – or lupus as it is more commonly known. This is her story
The pain was excruciating and left no joint or cranny in my body unaffected. Sometimes I’d
have severe pain in my hips and would struggle to walk; sometimes my feet would swell and
throb so painfully that I wouldn’t dream of trying to put on my shoes. At other times I’d suffer the most terrible headaches; and sometimes the joints in my hands were so racked with pain that I couldn’t straighten my fingers, which left me unable to undertake everyday tasks such as opening drawers.
Later on, I was to discover that this freezing of the joints was a telltale symptom of my condition. But in the early stages, I remained ignorant as I tried to understand what was happening to me. Over the months, at one time or another, every single joint and muscle in my body seemed to experience the most intense, excruciating pain, leaving me physically and mentally spent.
At first I thought I was suffering excessive lactic acid after working out at the gym, so I stopped my exercise routine. But still the pain persisted. I visited several doctors, but no-one seemed to know what was wrong with me. My health deteriorated further and in the process I lost a lot of hair. All I knew for sure was that I was not well.
I had no appetite, but I’d force myself to eat – especially meat, because I was continually told “It’s good for you.” But, strangely enough, the more meat I ate, the more it repelled me, often
compelling me to rush to the toilet to throw up. The result was that, on top of everything else,
I became anaemic.
Almost a year after the first symptoms arose, I reached crisis point. I worried about my work constantly – I worked in a factory where I was responsible for the output of thousands of pairs of pants daily – and I was in a relationship with a heroin addict. With hindsight, I realise both my work and my relationship were aggravating my condition. I ended up with a raging temperature and was in such a daze that my parents had to take me to hospital for emergency treatment. There, during a critical two weeks’ stay, I was finally diagnosed with SLE, short for systemic lupus erythematosus – commonly referred to simply as lupus. I was 24 years old.
A chronic condition that’s hard to diagnose, lupus is a subtle shape-changer that mimics symptoms of other diseases. It advances slowly in the early stages, then attacks with a vengeance. In a nutshell, the condition occurs when antibodies, which should combat disease, instead attack the body’s own healthy cells and tissues, resulting in inflammation and tissue damage. SLE can affect any part of the body, but often harms the joints, muscles, skin, major organs, blood vessels, brain and nervous system.
After several blood tests confirmed my diagnosis, I was given 12 prednisone corticosteroid pills of 2.5mg each and, four hours later, was walking without pain and feeling the pangs of appetite for the first time in ages. I started eating the chocolates next to my hospital bed that friends and family had left for me, and took a pain-free stroll down the hospital corridors. My life force had returned and I was overcome with relief.
When my parents and friends visited me a few hours later, they were overjoyed to witness the
dramatic change in my condition. During my two weeks’ convalescence in hospital, I continued
to improve and ultimately returned to work and a nearly “normal” life.
Of course, I had to take my medication daily and, if I forgot, the nasty pangs of pain would remind me. I’d have to wait four hours before the medication would kick in and leave me pain-free once more.
But no matter what I did, I would still occasionally experience flare-ups. One morning, I woke to find exactly half my body in pain. It was as if someone had drawn a straight line down the middle of my body and split it in two. The pain was so debilitating that I couldn’t get out of bed. I eventually did manage to raise myself sufficiently to call my doctor, but was unable to get through to him. I swallowed a few more pills and, eventually, the pain began to subside.
Unfortunately, though my prescription dosage did ease my pains significantly, it also had side
effects such as hair growth on my face and arms. Also, my stomach got rounder and rounder.
These changes in my body bothered me, but in comparison to the physical pain, and the depression and fatigue that came with it, these side effects were bearable.
Despite my medication, I did continue to suffer exhaustion and pain, but I learnt to live with and around my condition. My appetite was also erratic and I continued, typically, to respond badly to meals that included meat. I would take my pain tablets often and became accustomed to living “under par”.
But after six years of this less-than-satisfactory existence, my life changed. First, I quit my job.
Then my partner died of a heroin overdose. Despite my sadness, it was like a weight off my shoulders – finally I could begin making clear decisions about my future.
One of the first things I did was become a vegetarian. Within weeks, the pain left – never to return. Ever!
Although the cause of SLE is unknown, there is anecdotal evidence that it can be triggered by extreme stress. From the day the stress factors were eliminated from my life, the pain left – and 13 years later, I still have never felt that old pain again. On the contrary, I feel great.
My doctor tells me that my diet has nothing to do with my “remission” but, honestly, I’m not so sure. While he cannot believe that deceptively simple life changes like leaving a job, or changing one’s diet, can bring about such dramatic improvement to one’s health, I can’t help feeling that our bodies know best. I finally listened to what my body was telling me and, to my joy, I’m enjoying life to the full.
I’m now teaching English in China – I’m qualified in this field – and looking forward to
learning about the country and its culture before seeing more of the world.
Maltese-born Josianne, 44, is currently living in Dalian in northeastern China. After spending time in Australia, she developed a love for the country and is eager to return after her stay in China. But first, she plans to immerse herself in her new life and learn Mandarin and tai chi. Josianne says that, along with travel, looking after her health has become a top priority.
