Jaime first started experiencing pain in her back and legs as a young teenager, and had her first surgery – a laminectomy – when she was just 14 years old. This surgery was successful and meant that Jaime could live a normal life for around 10 years, when the same pain in her legs started to return. She then had another laminectomy, which held the pain at bay for another five years.
In 2008, when Jaime was newly married, living in the United States and working as a General Manager at a hotel, the familiar pain in her legs returned. She sought advice from her doctors, who recommended that a lumbar spinal fusion was the only solution. Unfortunately, this surgery did not help Jaime’s condition, and she has lived with chronic, debilitating nerve pain ever since – almost a decade. As a consequence of this unsuccessful surgery and the intense pain she was living with, Jaime gained weight and began experiencing depression and anxiety. Sadly, her husband then left their marriage, resulting in Jaime losing her home. She made the decision to return home to Australia and move in with her parents, where she has lived ever since.
Jamie feels a great deal of shame about being a 38-year-old woman living at home with her parents, especially as she used to be so independent and live a vibrant, exciting life. Prior to 2008 Jaime had lived and worked in Japan, and had been an avid traveller, so she feels the loss of her old life acutely. When Jaime returned to Australia she knew no one, and was very isolated. While she would love to get a job and work a few hours a week, she has been unable to find an employer who is willing to be flexible enough to meet her needs. She is unable to stand or sit for long periods, and needs to move around a lot. She could also only work a few hours each day. The Disability Employment Providers she has visited for help to find a job have been unable to help her, saying her issues are mental, rather than physical – they say it’s all in her head.
Jaime goes to a pain management clinic every six weeks for monitoring of her medications, and also sees a counsellor. She has joined a colouring group at her local library to try and meet people, however none of them live with chronic pain so she doesn’t feel they really understand her situation. She does talk to people online in support groups like the Chronic Pain Australia forum, which helps somewhat.
Jaime currently experiences intense pain in her right leg, from the hip all the way down, that is extremely debilitating. Her pain specialist keeps trying different injections in the area, however she has not experienced any relief as yet. While Jaime can walk and move around, she is unable to go up or down stairs, and needs to rest frequently.
As well as the injections, Jaime is on daily opioids to control her nerve pain. She has, on several occasions, been accused of being a drug addict by medical professionals, even though she has all of the appropriate paperwork from her pain clinic back in America, and prescriptions from doctors in Australia. Some doctors have told her never to come back. Jaime is on a methadone program for her pain, which has led to medical professionals in hospital believing that she was a drug addict in a rehab program, and not believing she needed the drugs to alleviate her chronic pain.
Jaime’s doctors have told her that there is nothing else they can do to try and fix her nerve issues, and that pain management is her only option moving forward.
“Even amongst the medical profession, there’s not enough understanding about chronic pain. They think we’re liars, that we just want the drugs. But I just want relief from my pain!”
“I wish people could understand that we’re not pretending to be ill. We’re not lazy. I’d give anything to have my life back the way it was. It’s not that I don’t want to work, I’d love to be working like I used to.”
“My pain is intense, my legs hurt constantly, but I try not to show it. I don’t want to complain. I just pretend I’m OK when I’m out, and then have to come home and lie down for a few hours.”
“I’ve been called a drug addict by medical professionals, even when I have all the paperwork that says I need those drugs. It’s humiliating and heartbreaking, and completely unfair.”