When Jess Price had a sore throat in June 2017, she had no idea that in less than a year she would be diagnosed with myalgic encephalomyelitis and later, Fibromyalgia. Jess is one of three million Australians who live with chronic pain. The last week of July is National Pain Week. This year, Chronic Pain Australia is putting a face to the voices of those living with chronic pain.
Akii Ngo is the executive director of Chronic Pain Australia. Born with life-threatening necrotising enterocolitis, Akii has lived with pain her entire life.
‘As I grew and developed, I realised that the pain was not normal. And it became hard to ignore by the age of about eight. I had significant back pain and joint pain but despite seeking help and support, it wasn’t until about 14 when someone did something,’ Akii said.
Today, Akii lives with a number of complex chronic illnesses and disabilities including migraines, osteoarthritis, Ehlers Danlos syndrome (hEDS), an autonomic blood pressure disorder called Postural Orthostatic Tachycardia and myalgic encephalomyelitis.
‘Not being believed or taken seriously is, unfortunately, a very common theme for many people living with chronic pain. Especially young females,’ Akii said.
‘Over the years as I got older, I learnt about the importance of self-advocacy and about my rights as a person with multiple complex chronic illnesses and disabilities.’
Chronic pain an uncomfortable conversation
Her diagnosis left Jess Price frustrated with her body and wanting her life back.
‘I could barely walk 10 minutes without becoming bed ridden. And while I was managing to work, naps were a regular occurrence during the day. I would come home and just sleep. My weekends were spent resting. I didn’t see my friends for three months and all I could think about was the constant pain.’
In early 2019, Jess was working with a range of doctors and allied health professionals. To the outside world, it looked as if Jess was doing well. But she was still dealing with significant pain.
‘When I was alone, I was frustrated by the unexplained increase in pain and could regularly be found in the foetal position on the floor of a hot shower, in tears, just trying to stop the pain. Everything hurt and if I even lightly touched my arms or legs the pain would be excruciating. If you have never experienced chronic pain, mine could be described as pressing a really bad bruise, but constant and without the bruise.
‘As a society we have a tendency to avoid uncomfortable conversations. Discussing chronic pain is one of these uncomfortable conversations. I believe this is because chronic pain isn’t visible,’ Jess said.
Chronic pain doesn’t obey the same rules as acute pain
Many of us are familiar with pain and have experienced the kind of acute pain that heals and goes away. A cut or scrape of a sprained ankle. Whereas chronic pain is pain that does not go away and lasts for longer than three months. According to Chronic Pain Australia, Chronic pain ‘doesn’t obey the same rules as acute pain’. And it can often be seen as a mystery.
Chronic pain affects every part of Akii’s life and is often difficult to manage.
‘While I am always in pain, every minute of every day, the severity and how it affects me changes daily or sometimes even hourly. Each day is like waking up on roulette of pain and wondering how my body—and at times, subsequent mental health—is going to cope.
‘Most days are just okay. Some days are horrific. Some days are unbearable and occasionally, some days are ‘good’. That being said, it is likely that my ‘good’ days are most people’s bad days.’
Akii says that chronic pain is a spectrum and everybody’s experience is different.
‘Chronic pain is complex and everyone’s situation is different. Coping with and acceptance of living with pain is not something anyone ever should have to experience. Yet, millions of Australians do.
‘My experience with chronic illness, pain and disability is my lifetimes worth of agony, heartbreak, tears, self-advocacy and inner strength to get here. It is not an easy road and you never know who might be suffering. Every person’s experience of pain is their own. Pain is pain and everyone’s pain is valid.
‘Just because chronic pain is invisible, it does not mean the person suffering should be. Everyone with chronic pain just wants a chance to have a quality of life and an ability to live their life to the fullest. They should all have every opportunity to. Which is why having appropriate services, funding, supports and research for the millions of Australians living with chronic pain is so important.’
Self advocacy matters
For Jess, accepting that she had a disability has helped her to begin advocating for herself and others with invisible disabilities.
‘Accepting I had a disability was the ‘crucible moment’ of my story. I use a disability parking permit, wheelchairs at airports and places I will need to stand for more than 10 minutes. I have started to advocate for myself and others with invisible disabilities.
‘When I started taking advantage of the services offered for disability in 2018, I was embarrassed. I would be terrified of using my parking permit for fear of being questioned about why I was using a disabled parking spot. I was embarrassed being seen in a wheelchair at the airport. And I didn’t want people in my life to know about my disability. Upon reflection this embarrassment and fear stemmed from community stigma. And I am ashamed it took me getting a disability to understand these stigmas.’
Managing chronic pain is complex
Managing chronic pain can be as complex as the pain itself. Chronic Pain Australia believes in a ‘multidisciplinary approach to pain management’. This approach combines GPs, pharmacists and other allied health and mental health professionals to get the best results.
For Akii, managing chronic pain successfully means ensuring her lifestyle and environment are adjusted to meet her needs.
‘It’s about advocating for yourself and your care. It’s about discussing the impracticalities to your health care providers if what they are recommending is not suitable or practical. Especially in the public health system with long wait times and many hoops to jump through. This includes requesting reasonable workplace or study adjustments and having treatment plans in place.
‘Successful management of my pain has a lot to do with the acceptance of my limitations, the life I thought I was going to have and the person I thought I was going to be. It’s important to note that this is not a bad thing, just a new normal and shift in perspective.
‘It’s meant acknowledging and accepting that I physically can’t manage a full time work load—I stopped working full time almost 5 years ago— and will never be restful, wake up refreshed or be pain-free. That’s not saying that I cannot be happy and have a fulfilling life. It’s just accepting that my definition of success, productivity and ‘fulfilling life’ has changed.’
National Pain Week 2020
National Pain Week runs from Monday July 27 to Sunday August 2. On the National Pain Week website, you can find a number of Faces of Pain stories. These stories provide insight into living with chronic pain as well as some advice.
As part of National Pain Week in 2020, Chronic Pain Australia hosted a Facebook live event to discuss the results of the 2020 National pain Survey. You can watch the event on the Chronic Pain Australia Facebook page.