“19 years old; hiding in the supply cupboard at work, vomiting from pain into a stained sink, a little part of me dies. And, for one terrifying a moment, a tortured part of me wishes I would too.” – Writing about my pain, February 15 2009.
136 days later. My vindication. My redemption.
“Tears of indescribable joy.
I lie in my hospital bed as the surgeon details the ‘atrocious’ condition he found me in.
At this moment, I know I have triumphed. Against the cruellest of odds.
Against the judgements, the patronisation, the dismissal, the callousness.
And the suffering. So much suffering.
It should never have come to this,
But today, for the first time,
I am my own hero.”
– Writing about my diagnosis, July 1 2009.
I am 22 years old. I am a student. A daughter. A documentary-lover. A sister. A traveller. A dog owner. An employee. And a chronic pain survivor.
Mine is, in many ways, a lucky story.
From the age of 13 I knew something was drastically wrong. My legs rapidly and brutally turned against me.
My friends were shopping non-stop for hours on the weekends. By the end of most days, I was forced to sit down in the shower. I had no strength to stand against the pain anymore.
My friends were playing two or even three different sports every week. I was changing body position every 10 minutes while studying (sitting to standing to lying to sitting to standing…). Every position was excruciating. But at least each one hurt in a different way.
It continued. And deteriorated.
At 16, my friends had jobs. So did I. They were doing six hour shifts on their feet at checkouts. After one hour of a four hour shift, I was hiding in the work supply cupboard, snatching a few moments to sit on the dusty floor. My legs screeching as I begged myself not to cry. On several occasions, I vomited from pain.
And yet more. The pain spread to my neck, shoulders and jaw.
Like so many people battling chronic pain, I endured the indignity of being dismissed, derided and flat-out accused of lying by a stream of doctors. The story is too long to tell. Needless to say, gaining recognition of chronic pain experiences is hard enough. When you’re a 13 year old girl, it seems hopeless.
Several doctors wanted to push me into psychiatric treatment to "talk [me] out of my psychosomatic condition". I faced a desperate dilemma. To get serious help, I needed people to know just how miserable the pain was making me. Appear to be coping too well, and they would think my condition didn’t warrant serious help. But tell the truth, and my despair would be just the ‘evidence’ they needed to push the psychiatric theory. I was terrified that if I was sucked into the psychiatric system with a physical condition (which was yet to be ruled out), I would not make it out alive.
Ashamed that my condition was allegedly not ‘real', I kept my pain secret from most people in my life. I continued the cycle of seeking medical help. But I had to be practical. If nobody would believe me, then nobody would help me. And if nobody would help me, I had to either start learning how to live with the pain, or not live at all.
But live I did. I developed elaborate coping techniques and formidable personal strength. To outsiders, I had it all. I was Dux of the school, head of two school co-curricular groups and an award-winning debater. I had up to 3 casual jobs at a time. I performed in pantomimes, volunteered at youth camps and attended university on a full scholarship. But every activity, every hour of studying, every car trip, every shift, had a price. More pain. More suffering.
Somehow, through an iron will, relentless self-education and incisively questioning all medical advice, I avoided hundreds of possible wrong turns, and found my miracle. When I was 20, a fellow volunteer at camp (an osteopath) noticed my struggling gait. Concerned, she referred me to her boss, also an osteopath. Within 10 minutes of our meeting, he knew something was drastically wrong with my hips. He immediately referred me to a specialist hip surgeon. The surgeon too, took just minutes to confirm the diagnosis.
Why, after so many years, was the diagnosis so easy? The answer is the cruellest irony of all. All it took to diagnose me was for someone, anyone, to get up from behind their desk and actually touch my legs. No fancy diagnostics or ‘years of experience’. Just somebody who believed me enough, respected me enough, to examine me physically. Nobody had ever done that. All it took was a few gentle twists of my leg. A hip ‘range-of-motion’ test so basic, first year physiotherapy students can do it. My hips moved in ways no hip should.
‘Bilateral rupture of the teres ligaments, secondary to localised hypermobility’. An ugly description for an ugly condition. A condition so unknown to the medical field, that I am the only person known to be diagnosed with it in both legs. In short, I was born with extremely loose hip joints. My joints moved so excessively during normal daily activities, that I gradually tore the thick ligaments which joined the tops of each femur to its hip socket. Years of tearing caused massive inflammation and damage. At the same time, my muscles struggled to hold my highly unstable hips together. As each muscle failed in this task, it would cramp up or shut down, and new ones would try to take over. Eventually, my entire lower body clamped up. The pain caused me to grind my teeth in my sleep, damaging my teeth and leading to intense head, jaw, neck and shoulder pain. Later I was to be diagnosed with severe endometriosis, for which I was hospitalised multiple times. My condition was so severe that the patches of endometriosis were found as far up as my diaphragm. The resulting inflammation only worsened my pain.
You may have seen a footballer, netball player or other athlete writhe in pain after 'blowing out' a knee or other joint. Imagine having an injury like that in both hips. Now image trying to walk around and function on it, undiagnosed and untreated, for 7 years. That is, in effect, what I did.
Vindicated at last, I was overwhelmed with emotion. The joy I felt on learning that my legs might be helped with surgery is indescribable. As I was undiagnosed and untreated for so many years, I will probably never be free of pain. Unfortunately, my young brain and body learnt that pain and inflammation are a normal baseline for functioning. It is highly likely that, had I been diagnosed back when I first sought help, I would not only have been saved 7 years of torment, but could have been completely curable.
However, 5 surgeries (3 hip arthroscopies and 2 laparoscopies) later, my life has improved dramatically. With the help of surgery, physiotherapy and an incredible GP, my pain is now 25% of what it was. Throughout the whole ordeal I completed a double degree at Monash University, finishing with a high distinction average. Along with my full scholarship, I won several academic awards and was sent on an official semester-long exchange to Canada. I continued to work various casual jobs. I am now on another full scholarship, studying a graduate diploma at the Australian National University, and completing highly physical fieldwork in beautiful places all over Australia.
As long as I have hot showers, orthotics, a good backpack, Tiger Balm, an electric blanket, supportive shoes, somewhere to swim, my family, my dog, maybe some good TV and the true friends who love me for all my foibles, I think I’ll be OK.
Please believe me. You can be too.