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  • Writer's pictureLouise G

b words and other stories | fibromyalgia is an f-word.

Updated: Sep 22, 2023

I was 24 years old when I was diagnosed with what I now know is considered a chronic illness. I remember thinking for years that I was dying, but being too afraid to find out if I was actually right. It did however, get to the point when I thought, “shouldn’t I have died by now?”. And so, my journey began.

The first conversation I had was with my GP at the time. I remember being poked, prodded, sent off for blood tests, and then told that I had an iron and vitamin D deficiency, so we better treat that. Get some sun, eat some meat, buy some vitamins, take it easy. So I diligently went on my way like a good patient, did as I was told, and nothing improved.

I returned to my GP. I was poked and prodded, and then told my blood pressure was high, and I needed to lose some weight. This scenario snow-balled into being diagnosed with Depression, Polycystic Ovarian Syndrome, and subsequently prescribed the oral contraceptive pill and an anti-depressant medication. Nothing improved.

The confusion and frustration of my GP was palpable each time I walked through her door. I was now ‘that’ patient. The annoying one who keeps coming back and challenging her expertise. The thing was, I honestly wanted her to like me, I wanted her to help me, I didn’t want to be in this alone, I needed her on my team. I was absolutely terrified. And, I could never find the words to fully describe to her how I was feeling.

There is no way to accurately tell someone what it feels like to think that your body is completely giving up on you. How my muscles always ached, my joints were always painful, I could feel it to the core of my bones. The heaviness I felt every day trying to get myself moving, as though someone put weights in my socks. The wooly feeling that I had in my brain. But then trying to assure her that I really didn’t otherwise feel sad or anxious, except that I worried for my physical health. I was otherwise ‘kicking goals’.

I was an independent young woman, 'snap'! I moved out of home at 18 years old, lived with friends in a nice little share-house in inner Melbourne. I worked my way through my university degree, paid my bills, gained employment as a nurse, and had started my postgraduate studies. I had friends, I had hobbies, and I very much looked forward to my future. There was nothing at the time that concerned me. Other than, my bloody body wasn’t working.

I started to notice what I now know to be the ‘flare ups’ of my symptoms. Numbness and tingling in my feet and hands. Fuzzy vision and night sweats. So of course, I started going to Dr Google. I became convinced that I had Multiple Sclerosis. My GP became fed up and reluctantly referred me to see a Rheumatologist. I had no markers for inflammation, no family history of autoimmune diseases, no predisposing factors. But, I think she reached a point of throwing her hands in the air and wanting someone else to tell me that I’m fine and to leave my GP alone.

I spent a long time talking to the Rheumatologist. He was nice enough, asked a lot of questions, poked and prodded me. And then he said, “well, I can’t really see that there’s anything obviously wrong with you.” My heart sank. How terrible it was that I wanted him to find something wrong with me. I desperately needed to be able to explain what was going on for me. He sat quietly for a while in his chair, tapping his chin and thinking. It is as though he knew I wouldn’t leave easily without him telling me something more than there was nothing wrong but charging me $400 to tell me that. It was a lot of money for me as a student, back in the day!

He then told me that I have Fibromyalgia. I had never heard of this before. He semi-explained what it was, told me that I wouldn't die from it, and then told me that the treatment for it is self-care. There was nothing else. And that was that. I walked out of his office, sat in my car for what felt like hours, and I sobbed. How do I explain this to others?

I spent the next few months searching for answers. Did I get them? No. What I found were more questions than answers, really negative attitudes, and the realisation that in 2007, I was very much alone in this. So, I went all in. Full self-care. Everything you can possibly imagine. I lost a lot of weight, I exercised as much as my body would let me, I monitored everything I ate to ensure it was ‘balanced’, I took vitamins and minerals until my body rattled, I saw a psychologist, a hypnotherapist, a physiotherapist, an osteopath, a naturopath, a personal trainer, I went to yoga, I tried medication, mindfulness, I went back on psychotropic medication 'for my mental health', I moved to a warmer climate, I changed jobs. I essentially just tried to cover all bases.

Years went by, and now I was 33 years old. Nothing had changed. Literally nothing. Everything still hurt. Sometimes it felt worse than it ever was. Waking up in the night to ‘dead legs’, ‘dead arms’, constant feeling of tingling, tinnitus, locked jaw, feeling unrested and agitated. Why was this still happening to me? I was doing everything that I had been told to, and more. So, there I was, back at my GP. A different GP by this stage. She told me to try a new medication. I refused, and she was annoyed. So, she referred me to a rheumatologist and a neurologist.

I had been a nurse for 8 years by this stage. I understood the jargon. I knew what to ask. And, I had the money to splash out on being poked and prodded by the best money could buy. And, I was kindly and gently told me, there was nothing they could do, because I have Fibromyalgia. And still, no one had properly told me what this meant or what to do about it. 9 years later, and I felt absolutely distraught and desperate. A 33 year old woman should not feel as though they were living in the body of a 90 year old woman, and be met with shrugs and sad eyes from health professionals. But the reality was, they were right. There was nothing they could really do.

The only thing I could do, was a complete overhaul and shift my mindset completely. I realised that this was something I just had to learn to live with. I had no choice. It was not going anywhere. And so I did. I refused to let it get in my way. And since this time, I have continued to build a life for myself. I have progressed in my career. I have built an amazing life alongside someone who is incredibly supportive of me, with two little ones that our absolute world. Has it been easy? Never. Has it been worth hanging in there? Absolutely.

Surrendering to Fibromyalgia was never and will never be an option to me. I refuse to let it take a minute of life from me. My only regret? Keeping it so close to my chest for so long. I never spoke a word about it to others. Oh, the shame I felt, having an illness that people didn’t know about or knew so little about, that couldn’t be proven or treated, that health professionals laughed about because they thought it was fake and, “all in the mind”.

How I reconcile this? By being the health professional to others going through similar difficulties, that I wish I had in my life for all of those years.

Stay strong. Don't give up. And, never, ever, feel ashamed for an illness that you didn’t cause and you never invited into your life.

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