One of the biggest shocks of my life is how little people care about someone who’s sick, disabled and/or in horrible pain every day.
Whether they don’t believe that kind of pain is possible, or whether they just we’re all attention seeking hypochondriacs, normal people do NOT care. Not one iota.
I’ve seen it from every person who was close to me. The people who are close to me now are old friends, from school, from bands I once played in. THEY remember who I was.
People who were my closest friends and family would prefer to believe I’ve had a complete 180 degree personality turnaround rather than believe I have severe pain every day of my life. They just do NOT believe it. Therefore giving me compassion and encouragement and support “only encourages me” to “keep it up”.
Heck, why should they help me when all I need to do is cut out dairy and wheat and maybe throw in some yoga? Everyone knows those interventions CURE EVERYTHING!
But the real problem is that the ‘people in charge’ and even our own peak body advocating for pain patients Pain Australia do not care about chronic pain.
Read what Carol Bennet, the CEO, has to say :
“Opioids should not be used for chronic pain management but the problem we have is that there are 3.2 million Australians who live with chronic pain conditions,” Ms Bennett said.”
She should NOT be in charge of this organisation. She is condemning people to interminable suffering. People who have painful, degenerative diseases for whom opioids are the only form of relief (not complete pain relief, nothing can do that, SOME relief though). People who have been functioning well on opioids for years, decades. She is on a mission to take opioids away from everyone, except the dying, and maybe after a surgery, for a day or two.
Her views are NOT based on science. Everything she says and does is based on rhetoric and fear mongering.
She should be ashamed. She is not helping the people she is being highly paid to advocate for. I’ve met her, and she could not have cared less. Whatever her agenda, it sure isn’t helping people with intractable, severe, daily, pain.
To her, reducing the amount of opioid prescriptions that are written is success! Who cares if it means people are suffering. Perhaps dying. It’s all just numbers and opioid hysteria.
I get messages almost every day from people who are being cut off and told to go to physical therapy and take Panadol. People who were working, socialising, living…being condemned to lying in bed in agony.
Because of Pain Australia and opioid hysteria.
Not every chronic pain patient needs opioids. Not every patient benefits from opioids. But a large population function well and live vastly improved lives because they have a caring doctor who prescribes proper pain relief.
I’m lucky. At this point, my doctors continue to prescribe. Others are not so lucky. No one is fighting for us. I’m going to dedicate most of my energy to pain patient advocacy. Our side of the story needs to be told, be heard. Because I take opioids I can’t get health care (doctors refuse to see me), I get ignored in the ER even when I’m not there due to pain, I have a partially paralysed leg because neurosurgery wouldn’t see me when I had cauda equina syndrome. I am treated like the lowest of the low. And my opioids use is part of the reason I almost died after my hysterectomy – they treated me like an addict. They decided to detox me, for my own good. And therefore my very obvious symptoms of a massive post op bleed were treated like an addict going through withdrawal.
The medical profession and Pain Australia have a lot ot answer for.