What doctors need to understand about life with chronic pain

It took just under a decade, and countless doctors, tests, specialists, money and tears of desperation to get a diagnosis.

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It's National Pain Week, and the theme this year is 'equal partners in healthcare'. But to be honest, I don't feel like an equal in the healthcare system. When I started to develop strange symptoms — permanent and unbearable pain, constant fatigue, light sensitivity, headaches, brain fog and more — at the tender age of 19, I certainly wasn't treated as an equal by healthcare providers.

Last year, I was diagnosed with fibromyalgia. I'm now 28, which means it took just under a decade, and countless doctors, tests, specialists, money and tears of desperation to get a diagnosis. I couldn't afford to travel or carelessly enjoy life like my friends were in their 20s. I could barely afford rent, and often had to choose between buying pain meds or food. I didn't eat properly, my mental health plummeted, and I made a lot of unhealthy decisions that made my physical symptoms worse because my depression was at an all-time high.

Despite nearly 10 years of this hell, I today consider myself lucky — I've finally found a GP who properly listens to me and actually wants to help me manage my daily pain and fatigue, after years of shelling out every dollar I had on doctors who put me in the 'too hard' basket. Plenty of people in similar situations are not as lucky as I am.

The cost of living with a chronic illness is high.

My new guardian angel GP referred me to a pain clinic at a nearby hospital, where I attended several sessions with physiotherapists, pain specialists and psychologists. Not one doctor I'd seen in the past nine years had even mentioned me to me that these pain clinics exist. It took less than a day of sessions there for them to diagnose me with fibromyalgia, and recommend a treatment plan that included exercise, psychological treatments, and medication. I wept for hours after; it was a bittersweet feeling of relief that someone had finally listened and that it wasn't 'all in my head' (as some doctors had so kindly put it in the past), mixed with the heartbreaking reality that I had a chronic illness that would affect me on a daily basis, likely for the rest of my life.

The cost of living with a chronic illness is high. I have far more doctors' appointments than the average person, and when you add in regular physio and psychologist visits, monthly medication costs, and the unbelievable amount of vitamins and supplements I have to take. I also regularly practise yoga and Pilates, and walk as much possible to get regular exercise. I constantly have to consider pacing of my day, week, month, making sure I don't overexert myself and cause a flare-up. This management plan takes a lot of money, time and effort, and it's a large mental load to manage effectively. Despite doing all of this, I still have flare-ups that can be absolutely debilitating. The only thing that can help me during those times is painkillers.

Under the government's new national action plan to assist the one in five Australians living with chronic pain, people with chronic pain would have access to more Medicare-funded services and rebates. Doctors could also choose to undertake six months of study to gain a certificate in order to better assist patients with chronic pain. This is all fantastic. The more education and accessible services, the better. However, one of the main points made in this plan is that doctors would be encouraged not to prescribe pain medication, or as little as possible.

Doctors I saw didn’t believe me and refused to give me any pain relief at all.

This sounds like a positive thing – and it is, in the sense that opioid addiction is a real and prevalent issue – but it does scare me. It scares me as someone who has already dramatically reduced the amount of pain medication I take – honestly, at the expense of my quality of life – and absolutely needs the ones I have now to function.

It scares me as someone who spent a decade of my young life in debilitating pain, because doctors I saw didn’t believe me and refused to give me any pain relief at all. I know so many chronically ill people who have had the same experience, and are treated as over-dramatic drug-seekers.

I understand why prescribing less pain medication is important in tackling the issue of addiction to prescription painkillers. But for people in debilitating pain, who have tried every other avenue to manage their symptoms, it terrifies me that doctors are being encouraged to cut down their access to something that helps me to live a somewhat regular life.

This plan isn't erasing pain medication altogether, but after my heartbreaking experience as a scared, vulnerable young woman who begged for help and was denied, I struggle to trust that this new action plan will be implemented in a way that will see chronic pain patients have the best possible quality of life.

I've been made to feel unequal, powerless, hopeless and delusional by our healthcare system. So in National Pain Week, I feel it is important to share my story, my fears and distrust in the way chronic pain patients are treated.

Chronically ill people will be equal in healthcare when our pain is believed and treated holistically by practitioners – and that will often include pain medications. We are not a homogenous group. We are all different and just trying to do the best we can. Please, please believe us.

National Pain Week runs from July 22 to July 28.

If you need immediate assistance or support contact Beyond Blue 1300 22 463, www.beyondblue.org.au  or Headspace 1800 650 890, www.headspace.org.au.