My 30 Year Search for Relief from Chronic Pain and the Struggle to Access Pain Relief for an Invisible Condition
Chronic pain is an invisible condition, so it’s impossible for others to understand just how bad
it can be. Kathryn knows this more than most. After nearly 30 years of excruciating chronic
pain, she shares her ongoing struggle with finding relief within a healthcare system that does
not believe her.
In 1993, I hurt my neck and shoulder sorting
mail at the Australia Post. Nearly 30 years later,
it is still the same. The pain is excruciating!
It also causes depression and anxiety which
are awful. Thankfully, I have the depression
mostly under control but the anxiety, when it
comes, is terrible. I am trialing Palexia at the
moment. I find I cannot do very much; it does
not stop me from trying, although I usually
end up in pain as a result.
I have had awful experiences with doctors. I
attended the Royal Hobart Hospital Pain Clinic for some years and the doctor who was
responsible for my care was very good.
Unfortunately she eventually left, and the new doctor immediately took me off the pain
tablets I was on. At that time I was taking Buprenorphine, and they refused to give me strong
pain medication to replace this.
After telling her that Lyrica was not working, she wrote a letter to my GP saying that I was
asking for opiates again. That just had the worst impact on me. I wrote her a letter, which I
took in to the last appointment, with an advocate to assist on my behalf. I read it aloud to
her, so I could be sure she heard everything I had to say. I did this in front of my advocate, a
nurse and a trainee; then I told her I would not be back.
Following this, when I next went to an appointment with my GP, he also refused to prescribe
me any medication. What was I to do? As I was planning a move, I found a new GP in my
new local area. Armed with my paperwork from the Pain Clinic, I explained everything to
him. Finally, I had someone in my corner that was willing to help me.
Sometimes people just need strong medications for their pain. Not everyone is a drug
addict.
In 2012, I had a stroke so I was flown to the Royal Hobart Hospital. The Doctor assigned to
my care walked in and said, “…You should not be on that medication.” At the time I was
taking OxyContin, and he did not even ask what it was for. All I could have was Panadeine
Forte, which has never helped my neck and shoulder pain. Subsequently, I was forced to
endure a week of awful pain!
After a week I was transferred to the Launceston General Hospital (LGH), and again could
not get any sufficient pain relief. They were only willing to offer me Panadeine Forte, so I
wanted to discharge myself. They arranged for a pharmacist to come see me, who was able
to intervene on my behalf. At last I had access to the necessary pain relief.
In 2006, I was sent to the Mental Health Ward at the LGH. As the staff was always telling
you to “…Try things, and not just sit around,” I used one of the massage chairs. This
immediately caused my neck to ache and burn. Three times that day the staff tried to get the
Doctor on duty in the Hospital to come down to the unit, yet he would not come.
At 10pm, the Sister in charge called an outside Doctor who came in to see me. Unfortunately
this happened just as the Hospital on-call Doctor decided to come, so the poor outside
Doctor left. The Doctor inquired as to what I was normally prescribed, and I told him “…It
was 15mg of morphine when it was this bad.”
“…Well I am not giving you that,” he said, and ended up giving me 10ml. He had to come
back 6 hours later to give me another 10mls, as the first dosage had not worked. At 6am, it
finally worked and I was able to have some relief from the pain.
I was in excruciating pain for 18 hours because I was not believed. It was disgraceful.
I did complain, but they just did not believe me. Because you cannot see the pain they do
not believe you, and have no idea just how bad it can be. Even my partner of 20 years at the
time questioned my pain.
This sucks your confidence and self-esteem away; it makes you very, very angry. It sucks
the life out of you.
This is not a happy story. I have never lied about the pain I experience, and I am left at times
feeling without hope. I have seen psychologists and psychiatrists, and although they have
tried, they cannot understand what life is like with this.
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APMA does not offer medical advice through the blog entries. Please speak to your healthcare professional for any information surrounding a condition and/or medication