By Lelena Peacock.
Just over a year ago, I joined Twitter. At the time, I couldn’t have foreseen the journey that awaited me the day I set up my profile and started familiarizing myself with trending hashtags, timelines, and threads, Before I knew it, I was on my way to becoming an “accidental advocate” for those battling chronic pain and illness. I found tweets revealing a dire struggle I knew a little something about: discrimination against patients in pain, especially patients who take opioid medication. I’m a Spoonie, which is a slang term for someone dealing with chronic illness. I understand all to well the stigma of being a dreaded chronic pain patient in the anti-opioid era.
I discovered the Veterans Administration was instituting blunt, harmful, one-size-fits-all measures to stem the opioid crisis. Apparently, many Veterans with injuries or pain syndromes treated with long term opioid therapy were now being forcibly tapered from their medications. I was compelled to respond to these tweets, and my direct message inbox filled up with desperate pain patients seriously considering suicide as an option to end their suffering. I heard accounts of patients who were vilified, treated like criminals, and abandoned by terrified doctors. As time went on, it became clear this was not limited to Veterans. People all over the United States were being denied pain medication. They were forced to suffer withdrawal from opioids, often alone, and oftentimes without a humane and safe taper. The folks I spoke with mentioned killing themselves as a way out of their constant agony. Some even had elaborate plans in place. None of them had much support outside of the Suicide Hotline, 911, or reaching out to an online friend.
“I’ve got an old truck out back. I’m going to shoot myself in the truck. That way I won’t leave a mess in the house for my wife and kids to deal with.”
“It’s been a good ride Lelena. I don’t have much to complain about until now. I’m sorry to leave the people I love, but I can’t live like this anymore. My meds gave me my life back, and now they’ve taken that away from me.”
“No one is home, so I think I’ll get in the bathtub for a while. It wouldn’t be that hard to take a knife and bleed until I fall asleep. I’m just so tired. Do you think my husband would forgive me if I did? Please pray for me.”
“I’ve got good news. I found a new doctor. His name is Dr. Ruger (brand name of a gun company). We have an appointment very soon, and I get to say when.”
These are the kinds of messages I field all the time, and they show no signs of stopping. To date, I’ve spoken to over seventy chronic pain patients considering suicide. The naked suffering and angst I confront on Twitter alone is staggering. As a chronic pain patient, I fully support those who are struggling with addiction. They should be afforded whatever resources they need to recover and reclaim their lives. I find it astonishing that the same courtesy isn’t extended to patients living in unchecked pain.
I’m part of a small army of chronic pain patients on social media and Twitter. Our community offers invaluable support while we fight draconian governmental interference in American medicine. For too long now, chronic pain patients have been left out of the conversation. Our lives matter too. We come with our own unique set of challenges, just like folks struggling with addiction. Both vulnerable groups deserve quality of life and patient-centric care.
To all my fellow Spoonies out there, I want you to know you are NOT alone. There are people out there that truly understand what you’re going through. Don’t give up hope yet! Suicide is a permanent solution to a temporary problem. Please come join me and the other “accidental advocates” on social media to fight for patient rights, and access to all treatments and medications for chronic disease and intractable pain.
Lelena Peacock is a freelance photographer, writer, caregiver, and “accidental advocate” for people battling chronic illness and chronic pain. She is a graduate of UNC Chapel Hill, loves animals, and can sometimes be found wandering around the Appalachian Mountains in her home state of North Carolina.
Follow her on Twitter: @LelenaPeacock
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