My Story: The Accidental Advocate

My Story: The Accidental Advocate

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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Authored by: Lelena Peacock

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Patricia Haas

I would try walking with a cane on the side of your pain so people are less likely to bump into you. I use a cane people either help you or avoid you.

ALAN Baughman

Thanks for the article, it hit home, and in the same boat. I’ve had three back surgeries with no success that caused all kinds of nerve pain and neuropathy, have fibromyalgia, interstitial cystitis, chronic and late stage arachnoiditis, migraines and much more. Have tried spinal stimulation implant and had to have it removed because of increased pain and back blistering, tried all different kinds of injections(From epidural injections to radio-frequency nerve blocks) and now they are learning that these injections may be causing the arachnoiditis. Even tried the CBD oil with no success and the other alternative treatmeants aren’t covered by insurance. I’ve been taking oxycodone that successively controls my pain but now it’s being reduced and they are trying to force me to take the so called long-acting
medications that are to expensive and would max out my coverage gap in four to five months and then I would have to stop them because of the very high co-pays. I don’t abuse my medications and they don’t make me high or anything else but ease the pain enough so I can function enough to not wanting to end it all, but now they have cut meds. twice which now leaves me barely able to function and if cut anymore I guess I’ll be another
casually of this whole mess.

Alan Edwards

This is an excellent article. I did not know what a spoonie was. And it sounds like you are a rare person, Ms. Peacock. Like other contributors to NPR, you understand the seriousness of the current situation and the needless suffering. There are many caregivers not so kind. Pain patients do not have a voice. Our health limits us to spurts of writing or even bathing only when pain allows. Here in the Blue Ridge Mountains I know of one person besides myself who is an intractable pain patient and I know of no others unless they are hospitalized.There may be a few hundred in the surrounding counties. The point is we cannot meet, get out most of the time or do the things healthy people do. Very quickly, I found one voice who in 2010, John Stossel, aired a short program on YouTube which foreshadowed what is now going on. He included the plight of the elderly in nursing homes suffering in pain and untreated then. I have no link to click on but enter ‘John Stossel- war on painkillers’ in the search bar. Watch it twice. He clearly blames the government in 2009 or 2010. He is on FBN now and still will not cave in to the propaganda coming from the alphabet agencies. Like you and your article, this is a rare view. And we badly need national public pain advocates who are able. Again, ‘John Stossel-war on painkillers’ on YouTube, google bing or hotbot, maybe.

Kimberly

Your thoughts are nice, but this is not a temporary problem. I suspect it could take 15-20 years for the country to get un-brainwashed and give us some life back. Even with my pain medication, I have very little quality of life. I stay alive for my mother, but not if my pain medication gets cut and puts me back in 24/7 pain.
It just does not seem possible that the federal government or the states will make any rapid changes to help the CPP.

Jul

Your an Angel. Thank you for putting this out.

Kim Miller

Great article, Lelena! Thanks for all you do. Warriors in the war on pain patients are all we have. #SuicideDue2Pain is too real. We’ve all been there if our meds have been abruptly tapered or stopped. Let’s hope hanging in here pays off.

@KimmeeKMiller

Dee

Lelena, beautifully written. You covered it all. This could be my story, though as you know I am caring for my husband. He’s been in chronic pain most of his life after falling on his head off of a roof. I sit and cry most days as I feel so helpless, so alone. It seems compassion has left the building. Or…perhaps people worry this could become their story so they stay away, not sure what to say. Many have been brainwashed to believe the people in pain are to blame for the opioid crises. From what I have seen people in pain management are “the” most closely monitored patients in the US. Monthly visits, urine, blood testing, one to make sure you aren’t taking anything else Another to make sure you are taking the correct dose. . Now there is testing to monitor your intake of pain pills over a period of time. Signed contracts giving up rights, locked boxes to protect others. Some are required to show up in the doctors office within 2 hours of a phone call for random pill counts. This ruins any plans for visitation with family. The world grows smaller every day, until one is alone. I pray that our government can see that they are effectively killing people. My country used to value life, what happened?

Missy

Kathleen she wasn’t saying your pain is a temporary thing, she said “these crazy attacks on chronic pain patients who use opioids is hopefully temporary”. She’s on your side ❤

S. Dickersum

Count me as another spooniie considering the same ending. You say temporary situation but I see no sign of that!

Paulette Brown

Yes, its awful the way the government has over stepped its bounds & decided what our Drs can prescribe for us. Its also a shame that the people that truly have chronic pain & take their meds as prescribed are being punished because criminals are selling drugs to druggies on the street. We are becoming more like communist every day. The government needs to stay the hell out of the Drs business of prescribing for their patients. Last time I checked, you had to go to college for like 8 yrs to be able to even diagnose much less write a prescription. Maybe if we take a few politicians & break a few of their major bones, burn them in a few places, ect, & then withheld their pain meds, they would sing a different time. I’m 65 yrs old, and since I was 40 I’ve dealt with spinal scolios & bulging disc in my lower back. They’ve done one surgery, it made it worse. Well its really bad now & no one wants to touch my spine, I have since been diagnosed with auto immune hemoliptic animea, they removed my spleen & thankfully it went into remission. I also have themoglobinemia, a blood clotting disorder, due to that & hsvingvclots all over both lungs & left leg, my right chamber in my heart is damaged & I have reflux in the veins in my legs. When they were trying to figure out why I was passing out all of the time (from anemia) I broke my left ankle so bad he thought they might have to amputate my foot, next time I passed out I broke my left femer. Now due to the metal in my leg it hurts twice as bad as the right does from the back issues. And they want to tell me i do NOT need pain pills?! All I can say is, walk ONE DAY in my shoes, bet you will change your tune.
j

Lelena Peacock

I want to say Kathleen is right to call me out on saying that suicide is a permanent solution to a temporary problem. Being sentenced to unchecked intractable pain is much like a living death, but I’m desperate for people to try and hang on if they can. Sometimes it’s hard to know what to say, even though I’ve been there, wanting to die from the pain. We need you. Every single one of you MATTERS, and I would be honored if you would come help us #ScreamLouder on social media. Thank you so much for the comments! I’m so touched by everyone’s powerful stories. Hope to see you out there!!

Just to clarify, without a doubt, Kathleen is on our side! I’m grateful for that! No hard feelings, I was acknowledging I didn’t strike the right tone with that phrase. 🙂

David Cole

Thank you Lelema!
As more and more evidence comes out showing the CDC guidelines being one of the most untruthful medical reports ever written. They even admitted themselves that they’ve been over counting RX opiate related deaths by 50% since 2006. Yet all government agencies continue to use these guidelines as there go to reason to take pain medication away from legitimate pain patients. This will go down in history as the most inhumane, disgusting display of ignorance ever forced on are most vulnerable population, the elderly, disabled and Wounded Warriors.

This is an important topic. September is National Suicide Awareness month.

The FDA recently held a hearing to listen to people who have been affected by the new CDC guidelines. https://www.nbcnews.com/storyline/americas-heroin-epidemic/pain-patients-beg-fda-more-options-easier-access-opioids-n890081

They are asking for public comments which will be accepted through Sept 10th. To comment, go to https://www.regulations.gov/document?D=FDA-2018-N-1621-0001

Rebecca

Thank you for your support. I too have an appointment with Dr Ruger.

Nicole Burrows

Lele. This is awesome. You did such a good job of saying what we all want to say and what we see daily on twitter. So proud of you!

Theresa L Negrete

It’s a pleasure to see such an eloquent writer, which I am not, advocating for us chronic pain sufferers. I can relate to the suicide ideations other pain sufferers are contemplating. When I can no longer function to do my daily activities, this is the option I have chosen. Also, I don’t know about anyone else who lives in pain 24/7, I find myself lashing out at the people I love most and soon will be more of a burden, that I can not accept.The Government and Kaiser Permanente are responsible for putting me in this situation. Kaiser has decided that anyone, including me, that does not have end stage cancer, will eventually be unable to get the opiate medication that works for their pain. I no longer brlieve Kaiser want’s us to THRIVE.

Kathy

My name is Kathy and I am a Registered Nurse and hold a few Masters Degree as well as being a published author. I know the pain and the stigma of having chronic pain. I have been on opiates for 20 years and have never had an issue with over taking or overdosing. I maintained my level of the same strength and routine for years. I am a very active person and for me to be able to function actively as I have for years, I need the help of that one little pill in the morning so I can move “freely”. I am tired of the government and Insurance companies telling our physicians how to treat their patients. I was denied life insurance because I take opioids daily. I don’t take anything stronger than a norco 10/325 yet I’m considered High Risk to the insurance companies. The stigma is hard to bear for some and THAT needs to change. We are not seekers for the benefit of getting high. Those who have chronic pain must have a way to find relief and be able to function daily. I am willing to “come out of the closet” per say, to fight for what is right and just and to HELP those in pain, not hinder them or hide them away from society. 15 years ago pain management was a big deal. The fifth vital sign was pain control! So, what went so horribly wrong that those of us with this daily pain have to suffer? It’s the few that abuse the system including the practitioners that have caused this raucous in the USA and it’s about time we collectively as a group of chronic pain patients who live life to the fullest, need to do something about!!!!

Great article Lelena ! And great comment by Kris. I haven’t the energy to think yet today confined to bed for 2 days and not functioning well yet.

William Dorn

I read that Andrew Kolodny profits from suboxone and that’s why he went after opioids.

Kathleen Kaiser

I wish people would stop saying that suicide is a permanent solution to a temporary problem when they are talking about chronic pain patients because it is not true. Those of us that have contemplated suicide and those that have committed suicide to escape the horrible pain we are in, it is NOT a temporary problem. If we thought the pain was going to stop soon we wouldn’t think about suicide. There aren’t many (if any) mothers out there that committed suicide while in labor because of the pains of having a baby. That’s because however painful it is, we know its temporary. If or when I choose to kill myself it will be to stop my suffering and if I thought for a minute that my pain would somehow stop or even get a little better I would not even think about suicide. So if I ever choose suicide as an end to my pain, please don’t think I’m weak for using an inappropriate treatment for my pain. We treat our pets better then this.

Maureen M.

Dear Lenena, Welcome to posting on NPR! As tough as that is to read… thank you for posting this ‘smidgen’ of the reality of our severely suffering CP community.
I think I stopped breathing for a bit while reading that! I’m devastated for those folks.
I hold my breath each month when I go to my doctor for my med…just waiting for that shoe to drop for me, to be taken off my pain medicine.
I believe your story (and all others like it) is exactly what needs to be put in the faces of our Gov’t. leaders. Have you brought any of your experiences with the suicidal to their attention?
God bless you for the support you lend to others. My prayers have now increased tenfold for them. God help them!!
Maureen M.

Kris Aaron

Those of us who can’t march in demonstrations or manage a visit to a lawmaker to advocate for pain patients can use our computers and writing skills to speak up for those living in agony. Our disabilities keep us stuck at home and invisible — the internet is our best way to let the healthy population know we’re not going to go quietly!
It’s an unforgivable crime to deny opioids to people living in pain and subsequently make suicide a viable “treatment” for unrelenting suffering. I’ve talked about “Dr. Ruger” and the “Drs. Smith and Wesson Pain Clinic”. I’ve heard healthy (and ignorant) people deny that pain can drive anyone to kill themselves. They need to live in our bodies for a few weeks and get a painful dose of reality.
Every pain patient I know is thinking about what they’ll do when their doctor is forced to end their opiate prescriptions. Forcing us to think seriously about how we’ll kill ourselves is not the answer to America’s opioid “epidemic”. We need to start by demanding detailed overdose statistics, not vague numbers that often mean nothing more than opioids were present when a person died of unrelated causes. SHAME on the CDC for their false information, and SHAME on people like Dr. Andrew Kolodny, a healthy person who is leading the push to taking opioid-based pain relief away from everyone!