Chronic Pain and Suicide

Chronic Pain and Suicide

By Liza Zoellick.

To not have your suffering recognized is an almost unbearable form of violence. – Andrei  Lankov

As a community I feel we try to give the validation and understanding that many within our community aren’t receiving on the outside. I can’t say how many times I have read a post on a chronic illness board, and read how truly excited people are that for the first time they are understood and not alone. But while we may feel less alone when we venture to these community boards or Spoonie chats, eventually, we have to return to our reality, and for many of us that reality is incredibly lonely along with being incredibly painful.

Liza Zoellick

When I talk about loneliness I do not necessarily mean the state of “being alone.” Many of us have family, kids, spouses and friends who are supportive and many of us have jobs and other hobbies and interests that keep us busy. The loneliness I am speaking of transcends beyond that which we associate with absence of people in our lives. This loneliness is insidious and pervasive because even in a room full of people we can still feel incredibly isolated and alone.  It’s a loneliness born from the isolation we feel as we endure the constant assault of pain on our bodies. This pain is not limited to the physical either, but the violence that takes shape through the neglect we feel, as our suffering goes unrecognized by so many, including those who love us and a medical community that is supposed to care for us. To a certain extent our effort to try and be normal, to buck up like good little soldiers and press on, to smile when we’d rather be crying and to sugar-coat how we are feeling to others when asked, has not done us any favors. It has left the perception among the “non-chronic,” that we aren’t quite as bad as we seem and worse, that we are lazy drug-seekers, looking to milk the system through disability. The indifference that we feel from those outside our chronic community is lethal.

Just for a moment, I want you to imagine with me this: You go from being a vibrant human being with friends and family, a great job and fulfilling hobbies, until one day you wake up sick. At first no one can tell you what is wrong even after test after test. Then, they tell you it’s all in your head and that you should get outside and exercise and you will feel better. Another doctor tells you to see a psychiatrist because he’s given up on finding anything and later on, pain management treats you with flagrant suspicion and red flags your chart as a drug seeker. In the mean time, your spouse (though they may love you) doesn’t know how to help you because they don’t understand what’s happened. You aren’t running a ridiculous fever and covered in lesions so why do you always hurt and why do you always feel so tired because you really do nothing all day? Your friends drop you like last season’s faux fur and if family wasn’t family you are pretty sure they would too. Working is reduced at first before being cut to part time before you can’t at all and you have to fight for disability. Anything else you once did for pure enjoyment is drastically reduced. You find yourself attached to the computer because it is a lifeline to normalcy, where you can talk to other people who understand this new reality. Then, when you are forced to leave those who have become surrogate family and friends, to be thrust back into an apathetic world you realize just how much you have lost and the knowledge of that can be too much to bear.

A few days ago I lost a friend I’d made on a chronic illness board. We’d been chatting back and forth and learned we were in the same city, planned on meeting after the holidays and then the holidays passed and I didn’t hear from her. But holidays are taxing and we all understand there are good days and bad days so I really didn’t think much when we celebrated New Year’s and I hadn’t heard from her. So when I received the message from her husband that she had reached the end of this battle with her illness and took her own life, I was devastated. The devastation coming from the intimate understanding of why she chose to end her life. This does not mean I am suicidal, or that anyone with chronic pain who has considered at some point, ending their own life is suicidal. I think that when you are living with pain that no one can control and you realize one day that it could be like this for 20-30 years, it can be an extremely daunting and terrifying thought. Also, let me say, that I am not condoning the act of suicide, merely saying that as someone who struggles with chronic pain and loneliness, that I can empathize with her thought process.

Her death is a tragedy. It is both a personal tragedy and human tragedy. Her family will have to continue without her, enduring all those life moments with her  but it is still also reflective of something much larger. Her death sheds light on the inadequate efforts taken to both understand and effectively treat chronic illness/pain, that may have prevented this entirely. Perhaps each and every suicide that is driven by interminable pain and loneliness, should be a teachable moment for those within the medical community and also, those making opioid laws, that they might endeavor to do better for those patients suffering. Perhaps, a picture of her face, and one for each of those countless others who have believed that their only option was to end their life should be assembled before lawmakers and hospitals and doctor offices, that they can see the true suffering that stole their life away.

Liza is a 43-year old chronic pain warrior from Houston who has been chronicling er journey through chronic pain and illness for eight months now on her blog: http://lovekarmafood.com. She is a contributor to the National Pain Report.

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Authored by: Liza Zoellick

There are 44 comments for this article
  1. Liza Zoellick at 1:45 pm

    Katie Semelis Donner Thank you so much. I will definitely look into that FaceBook and leave a a name for you. Though as you said, for privacy reasons on behalf of her family, I would change the name.

  2. Liza Zoellick at 1:37 pm

    Thank you David Cole. I plan on giving them hell in any way I can until I absolutely can’t any more. I appreciated you taking the time to comment. You made me aware of a few things I had known about!

  3. Katie Semelis Donner at 9:42 am

    First of all, I am so sorry for your loss. I felt led to keep track of all of the people whom we have lost in their fight against chronic pain… because no one else was. My first page on Facebook is Chronic Pain Suicide. I try to post a memorial to anyone who has lost that fight. I would love it if you could send a message on that page that memorializes your friend – you can change her name for privacy reasons of course, and I will post it on your behalf. Anyone who has lost someone who is reading this, please do the same. If you’d like to join the fight, I just created a closed group on Facebook called End Chronic Pain Suicide, where we can air our thoughts and strategize for Advocacy.

    I have found that there is a great stigma when it comes to chronic pain sufferers who are losing the fight of and for their life. It is said that over half of the 25-50 million Americans suffering from chronic pain will contemplate suicide, yet there are support groups who BAN any mention of suicide on their pages! I looked at a lot of Suicide Prevention websites and when it asked to choose the reason for suicidal thoughts, there was no choice for “Physical Pain.” I wrote to one of the groups to ask about it, but I received no reply! No reply from a Suicide Prevention website? I think that is horrendous- what if I had been in the planning stage of suicide?

    Untreated Pain is physically damaging and the deep dark depression and hopelessness we feel when we get weary of fighting that pain without an end in sight is emotionally damaging to the extreme. Yet the government and society still press on to regulate our only effective form of relief without knowing that for every 1 life that was possibly saved from addiction (they most likely will turn to a different substance instead), at least 3 lives were lost due to a preventable suicide (if they had only received compassionate care and effective opioid pain medication instead of being called an addict while getting a door shut in their face!) But we mustn’t forget the MILLIONS of Americans who are being tortured by removing the ONLY truly reliably effective, cost effective form of relief. We ALL suffer because of the very few who abuse our desperately-needed medicine. The number of pain prescriptions written continues to plummet even as the number of Baby Boomers hitting the age where falls and painful conditions befall them, so the number is going down when we should be expecting it to skyrocket! But the only thing skyrocketing is the number of opioid overdose deaths because of the rise in use of illicit Fentanyl and heroin. It should be obvious that pain prescriptions are not the main cause in overdose deaths, but the number of rich investors with powerful interests involved with impotent Addiction Treatment Centers and Big Pharma won’t allow these opioid anesthetic medications to again proliferate because most pain medications are cheap generics that are at least 200% more effective than any of their options. Never mind that people are dying and suffering. If there are millions of people hurting, we need to gather together and show the conflict-of-interest policy makers our gigantic prowess in numbers that will vote to oust any politician who doesn’t fight for the rights of the Pained and afflicted! Join together! Let’s vote these suspicious creeps out of power and take back our quality of life!

  4. Shazzy at 12:57 am

    Trying to get help for alot of us is non exsistant. ive been trying for over a year. one doctor shoved a script at me and that was it. no follow up no nothing.
    councelling in a rural situation is a no go i cant get in so many others obviously in more need get seen.
    my view is also not IF but WHEN
    i feel for my kids and grandkids that holds me back atm.
    Chronic pain, so many health issues, rare diseases, mesh etc. my
    body and mind have had enough

    thankyou for getting this out there. im sorry your friend passed ❤️

  5. Stephanie Scarbrough at 6:43 pm

    A wonderfully written, thoughtful article about such a sensitive subject! Thank you so much for this!! 💜

  6. Pain is all I know. at 5:52 pm

    Suicide IS an option. I have been on the verge for months now. I keep trying to tell myself why I NEED to stay in this world. My daughter… sure.. she needs me, but I am not me anymore, I am just a bundle of agonizing pain. My partner… yeah, sure he wants me to be here, but why? I am irritable, miserable, depressed and always in a totally horrid mood. My career.. yeah sure, I can’t work anymore because I cant focus on anything but pain. Neuropathy, Migraines, Degenerative disc disease, chronic abdomen pain for a recalled mesh that cant be removed. Now, the depression that goes along with losing everything. I mean EVERYTHING.

    Remind me again why this life is worth living because it is NOT.

    But maybe that is the governments plan all along. Population reduction… thin the herds.

    Every day that I wake up and face uncontrolled and worsening pain, is a day that brings me closer to the final day. It might be today… tomorrow… next week or in a month. But I will not see 2019, that I know for sure. I am not struggling with IF I should end it, or even WHEN I should end it. I am struggling every single hour of every single day to NOT end it and I am losing that battle. I have already had what I call my practice run. I attempted it, unfortunately, survived it. That just lets me know how to be more successful next time. Believe me.. there WILL be a next time.

    Opioids are gone. We aren’t getting them back. My Doctor flat out told me that. This is not a jerk Doctor either. He WANTS to give me the pain meds, but he can not legally do it. He would if he could.

  7. Neldine Ludwigson at 1:27 pm

    Too familiar sorry for and about your friend.

  8. Jamie at 7:32 am

    Very sad but true article. Over the past few years I’ve seen 5 virtual friends take their own life. I believe most people in chronic pain social media groups have seen this also. Something has to be done to change this. There has to be more research to find new ways of dealing with chronic pain. Chronic pain is mentally crippling and takes a huge toll on your body after any amount of time. Stay strong tribe.

  9. David Cole at 7:13 am

    Thank you for your well written thoughtful article Liza. Unfortunately there are now millions of people who contemplate suicide on a daily basis. This is our government doing its best work, the CDC guidelines were written by PROP, a bunch of anti opiate zealots with an agenda, this group is headed up by Andrew Kolodny he is a psychiatrist with many ties to addiction specialists, they had very little if any input from pain specialists, Advocates or patients. The guidelines are basically written for drug addicts. We are not drug addicts, we are not the ones dying from overdoses, we are not the ones becoming addicted to opiates, the CDC has admitted this, so the question is. Why? All I can say is follow the money. There are a lot of good people out there trying to help pain patients, however things aren’t going to change real fast. Every one of us needs to do something, whatever we can, if it’s tweeting writing on Facebook, sending letters to government officials, whatever you can do to get the message out that we’re sick and tired of committing suicide and being treated like drug addicts. I find tweeting out articles of suicides, hardships of pain patients very rewarding. If you’re a pain patient, family member of a pain patient, pain patient advocate you need to get into the fight, or you can just accept your fate, I for one am going to give them hell until the day I’m dead. These people have stole our lives, taken are doctors away, alienated us from our families, put us in horrific pain, destroyed our minds, etc. etc. etc. You need to think of yourself on the battlefield and somebody’s trying to kill you, because that’s exactly what’s going on. RX opiate prescriptions have been going down for 10 years, yet opiate-related deaths went up 28% 2015 21% in 2016 and it’s supposed to be worse in 2017, suicide is running rampant. Most normal people are just living their lives they don’t know what’s going on, it’s up to all of us to get this into the public Arena. God bless all of you and I wish you the best of luck, we’re all going to need it.

  10. Anonymous at 6:10 pm

    Dear Anonymous who was handcuffed and locked up,

    Thank you for confirming exactly what I believe would happen now. In the 1990’s I attempted suicide and made sure that I called from a pay phone , made sure I had no identification on me. I failed only because a friend ran into me and talked for about 10-15 minutes preventing me from reaching a field so not to be found until morning.

    Nowadays with GPS, there is no such thing as a private phone call. I believe these suicide hotlines are trying to help but they do not understand. I watched the YouTube post from an earlier comment to an RSD group on suicide and pain. All I can say is very little of what the speaker said could help me now.

    I am so sorry that you were dragged away in a police car. Mentally that is the worst thing that could happen to me. Physically the pain is the killer and society no longer cares. I do not know if you are any better today or not? I attempted suicide due to my pain meds being taken away and knowing I could not live in the pain. That pain was awful but now my pain is horrendous. I was told back in the 90’s that suicide would never again need to be an option as opioids would always be available. Who would have known that what I was told would be a bunch of bull now.

    There are, as you so well point out, NO safe places to call without the risk of being carted away. This is a real shame. If a group wanted to be helpful, they would publicly declare and hold to a truth and pledge that they are there to talk to, but in NO WAY WILL CALL THE POLICE or anyone else without your explicit permission. Until a group takes that kind of a public stand and abide by it, I would only encourage those that suicide is really just a call for help to call. If your problems are above a 72 hour hold or being possibly left to suffer in intractable pain for the rest of your life as a ward of the State, just stay silent and use your best decision making skills.

    I appreciate that you are confirming that this is exactly what these suicide hotlines do. I knew it as my brother’s roommate ended up with the police at the door to arrest her as well. Maybe it is fine for some people but not for those of us being left without proper healthcare, those of us that are now the garbage of society. The drug addict that has caused this is better treated than we are.

    My heart aches that you went through such an awful experience!

  11. Liza Zoellick at 5:17 pm

    I am really overwhelmed with the responses. Each and every one of you who took the time to write back, to share with me your story and who understand what I have written, thank you. Everything I write helps me as much as i endeavor to help those who read it.

    As one of you mentioned, it is also important for me to take care of myself which is why I cannot write back a reply to each and every one of you, but please know that I have read each reply and also those of who have gone to my blog and left messages; if I have not gotten back to you today I will soon. But I can run out of steam very fast if I don’t watch it and I want to be able to do what I can to help you.

    Thank you agai

  12. Katie Olmstead at 8:10 am

    Locked up in handcuffs? What a nightmare of a story. I have never heard of a hot line calling the police on someone. This is a terrible cautionary tale. I am so sorry. It’s really chilling. What a disincentive to call a hot line to just talk. Wow.

  13. Jamie at 5:08 am

    As so many others have said , This was beautifully written. I’m sure every one of us with chronic pain/ illness felt their story in your words! My journey began in 2005 and since the cdc guidelines came out I’m much worse now then I ever was before . I tell people all the time , unless you’ve lived with chronic pain/illness them you can’t possibly ever understand. They may think they do but they don’t. I’ve spoken to so many other chronic pain patients whom had never thought of suicide but again since the cdc guidelines more and more are thinking about it now. Myself included. If my eleven year old autistic daughter wasn’t here , had she never been born then i wouldn’t be sitting here now typing this comment. I wish with all my heart that people in power would hear us, would see our suffering and do something about it. Unfortunately we have a bunch of old school , closed minded people that think we’re all liars and drug seekers. Life has gotten hard for all of us! To Many are taking their lives much much to soon .

  14. Anonymous at 2:43 am

    Liza,
    It is so thoughtful and kind of you to try to create resources to help others. It’s uplifting to hear that. At the same time, I also urge you to take care of yourself and your health. Don’t sacrifice that to help others. Protect yourself and maintain some boundaries because we have limited energy and we have our own health issues. It’s not selfish — it’s survival.

    There are people who are hurting tremendously, and if you internalize it, it will cause you harm. Please be careful. Keep caring, but know you can’t fix some situations. Sometimes you can’t even understand some situations. Lots of things are so broke about the healthcare system, and about doctors and even about how patients may act toward other patients. I say that about patients because there are so many emotions and experiences and fears and mental and physical pain… that it’s not always going to make sense and it has the potential to cause harm if you don’t decide when to shield yourself.

    It may be hard to hear some of the responses you get on this difficult topic and you may want to help everyone individually and fix it all. When you hurt, and you connect with a community that is hurting, it gets amplified. It is enough that you shared your story and you care. Do what you can, but don’t try to do what you can’t. You’re hurting too, so remember that, and put what you need first so that you CAN reach out as you’re able to. If you don’t protect yourself and take care of yourself, then you’ll be too overwhelmed to help anyone, including yourself.

    I wish you the best. Thank you for sharing with us. It means a lot.

  15. Anonymous at 2:33 am

    Anonymous, (or other anonymous — I posted as anonymous also)

    I’m sorry that your trust was violated when you called the “suicide help line.” That sounds like a terrible, traumatic experience. So often, when we expect help and when we are desperate for help, those who are supposed to be helping end up pulling the rug out from under us.

    It’s them… not you.

    I’m sorry you’re unable to explore your thoughts in a way that doesn’t bring back these awful memories. It’s understandable… but that doesn’t make it easier.

    I just want to say that what happened to you should not have happened. I’m not an expert but as a fellow patient, I just want to say that I’m sorry to hear that this happened to you. My heart goes out to you.

    Thank you for sharing your story. I do hope that the procedure for the help lines has changed. I would expect them to be a safe resource. I imagine things might be different, and that they could identify people who were in imminent danger vs. someone who is not in danger. Even to err on the side of caution and ask the right questions rather than to impose any forceful treatment, at least…

    In any event, I hope you can find the support you need, in a safe way, even if it’s among other patients. I hope you can avoid isolating yourself. I’m so sorry you had that experience.

  16. Pam Carrie at 8:08 pm

    Thank you for you eloquent words, Liza Zoellick! My sister has RSD/CRPS. Your words help me to understand.

  17. Anonymous at 6:52 pm

    Although I’ve suffered severe chronic pain for 20 years now I am hesitatant to EVER acknowledge thoughts of suicide because years ago I was forcefully locked up in a mental hospital for 72 hours (which was the minimum— they could have decided to keep me indefinitely) after calling a “suicide help line” just to talk to someone understanding. Police arrived at my door while I was speaking with this supposed “compassionate” man, I was handcuffed & put in police car like a criminal so now I’m absolutely terrified & fearful that might happen again if I talk to anyone about my pain & depression so I keep all thoughts like this to myself. I’m even scared to post this comment! That’s how horrible my experience was. But I’m taking the risk to warn others of what happened to me in the past. Hopefully things have changed since then.

  18. Liza at 6:49 pm

    I can’t answer you all individually but I do want to take the time, as I try to do each and every time these articles come out, to thank you for reading and to thank you for sharing. I am really trying very hard to put my energy into a way that can maybe, change the lives of even a few. Between my blog and here and ideas I have running around my head to make use of this thing we call the internet, to try and bring people together. I sit and think..that so many of us feel so isolated even though we comes to these places to seek out people like us..there has to be a way to use this and maybe by connecting we won’t feel alone and we can make it through another day. Each of you are in my heart. Each of you are in my thoughts. Wishing you one day less with pain and another day that you are here. Because YOU MATTER.

  19. Anonymous at 6:17 pm

    To die or not to die is exactly with what I am struggling with at this moment!

    Last night I got word that the federal employees insurance had agreed that I fought the same medicine and won last year, so they forced my insurance to pay for all mt opioids for another year. I have an incurable, orphan rare disease, adhesive arachnoiditis. It is a neurological disease that most doctors seem to think is just a back ache or I have been told is not painful. Yet a paper written in England and on the NIH website says this disease has the pain of cancer without a death in site.

    But minutes before switching to call waiting, I was on with insurance being told that I had to drop 600 MME overnight. I already have a way to die without pain but I am so upset that I had planned to end it tonight, in a violent way, if my opioids hadn’t been reinstated and my doctor’s appointment didn’t go well.

    My doctors appointment went like crap! I tried to explain to my doctor that I need to be in palliative care. It took 5.5 years to get the pain under control. I called back leaving the office feeling that he doesn’t care if he sees me again this year, that I want the referral to palliative care. There are only two options where I live. My mom called one palliative care, near the Washington D.C. ares that admits that the disease qualifies, but since there are so many neurological diseases, they won’t take them.

    I feel as if I am lost in a field of loneliness and there is no answer left but death if not accepted into palliative care. My doctor just doesn’t seem to believe that the law was signed. I have avoided Pain Management doctors as they treat you as a criminal before even meeting you, requiring that you sign contracts. I am not a liar or cheater. I am very offended that because I have been suffering from pain since I was 14, that somehow makes me a criminal a drug abuser. No other disease is treated like this except for addiction. Why do I have to be treated as a criminal to get healthcare. And the reality still is that being in pain management will not allow for high dose opioids, ONLY palliative care. There is no guarantee that palliative care will keep my pain as in control as it has been, even with which I have little quality of life, bedridden 23+ hours a day.

    But don’t fool yourself that legislators care, they care ONLY for the deaths related to opioid overdoses, not those suffering in intractable pain.This was posted at the perfect time, tonight would have been it, if that phone call had not come last night. Instead, I now will wait to see if I can get into palliative care.

  20. Heather Vantress at 3:47 pm

    Michelle we make it count by giving her justification if anyone comes against her. You go directly to the senator and bring her story with family photos and have them a bill after her in your State to be sure NO ONE is left outside the pain management! Prayers for this journey.

  21. Jenny Picciotto at 2:56 pm

    This is an important topic and your words, Liza, are eloquent, compassionate, and compelling. Thank you for starting this conversation during your grief. Such a loss is deep for friends, family, and the community. Our local support group has arranged for a speaker from one of the local crisis support centers to come talk to us about their services. Preparing for a crisis is one of the ways we can provide support to ourselves and our families ahead of time. Know who to call, whether it is your primary care doctor, psychologist, or a crisis support line.

    Resource:
    “Living with Pain” Jill Harkavy-Friedman,PhD,
    American Foundation for Suicide Prevention, https://www.youtube.com/watch?v=ZKBY56SHSIU

    National Suicide Prevention Lifeline
    1-800-273-8255
    https://suicidepreventionlifeline.org/
    “We can all help prevent suicide. The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.”

  22. Terry at 2:09 pm

    You have summed up the chronic pain patient exactly. Everyone in our families should be asked to read this thread to understand better what we go through on a daily basis. Although I have never considered suicide, there are days that I find it hard to participate in life, but that’s not allowed, even if nobody is saying anything it, you feel like they think your a big loser who exaggerates their pain. I have CRPS, try to explain that to someone. Take care and keep on fighting the good fight, they can’t ignore us forever, especially if we keep writing our congressmen and senators and speaking up and advocating for ourselves.

  23. Katie Olmstead at 1:56 pm

    Suicide. Who among us hasn’t thought about it? It’s nearly 20 years for me with RSD/CRPS. That loneliness from not sharing our real state with those who are close to us, that in itself is a killer. It breaks the heart. I don’t want to burden my adult daughters but then have to live with the understanding that the cost is not being known. I turn to others to be known. It’s those same daughters who keep me on this side of the line, who keep me from suicide. For those of us who are denied our pain meds, it puts us more at risk of suicide. Liza, I am sorry for the loss of your friend but, and this is important, I know you aren’t judging her. To the anonymous writer, I hope that you can somehow get through to your father. Seek professional intervention if you can!

  24. Janice Snyder at 1:42 pm

    Sadly, unfortunately, and tragically, I don’t think that anyone who has experienced chronic, prolonged, and unmitigated pain will be surprised that suicide becomes the choice of last resort.

    God have mercy on their souls.

  25. Alan Edwards at 1:26 pm

    This is for Mr. Castle. We are in the same situation. Can barely type to reply.

    You.are either misdiagnosed or you have many sources of pain. You are definitely in a serious situation. Opioids will work when nothing else besides prayer. Prayer is never advocated by any professional I know.

    You are being given the wrong medication and/or dosage that would work. If you have an advocate, like a wife, contact your doctor immediately. The body especially the heart can fail under the duress of pain .Or a stroke can occur like I have already had.

    Don’t underestimate pain. Doctors do unfortunately. So do those not in constant agony. But an opioid will work. Must be dosed correctly at an effective level…get someone on the phone now. A relative, friend, whomever.

  26. Barrow at 12:47 pm

    Liza, I have thought about ways to show our names and faces, to humanize us much like what the AIDS quilt did for the sick and dying who, for far too long, were shoved out of most of their fellow human beings minds. “This will never happen to me because… I’m not gay. I’m not a hemophiliac. I’m not a sex worker. I’m not a junkie.” Etc Etc. I was there when AIDS happened, from day one. One of my best friends was the fourth man to die in the U.S. What he died of didn’t even have a name yet. Over the years I lost dozens of friends to AIDS, two of whom’s hands I held as they took their last labored breath. And I remember how the quilt started– people sewing a patch and personalizing it with a name, age at death, perhaps in their loved ones favorite color. Images of the things he loved most stitched in– a baseball & bat, the names of his nieces & nephews, song lyrics, a teddy bear. It started so small. But I also remember going to D.C. in 1994 when it was displayed on the mall in celebration of the 25th anniversary of Stonewall. With technology and the gifts of the Internet and social media, we could much more quickly create a wall of the suffering and the dying– suicides could be distinguished by a dark star on a white square or something of that sort, something that wouldn’t fail to stand out and catch the eye of everyone looking. Perhaps we could start a group solely devoted to this project. Liza, if you or anyone reading this are interested, comment back and we can arrange to get in touch. I have said in many other posts– this has become a humanitarian crisis. Something has got to be done and I, for one, don’t believe emailing politicians who are being paid by the people behind this assault on tens of millions of Americans and our doctors is going to help. I’m so very sorry for your loss. Thank you for writing this article and not sugar-coating the dreadful, cruel reality we are living, and dying, in.

  27. Steven Smith at 12:31 pm

    We all who are left are in serious trouble if not now then sometime. How this article points out peoples unjustifiable demise is disgusting yet real life and it’s happening. If it continues there won’t be any pain report next year at this time because there won’t be anybody in pain. Think about it. I thought it would come to this for4 years ago when Vicodin was reformulated so not to work any longer for chronic use but had my fears confirmed at my last so-called doctor visit. They said they had 10 minutes then they had to move on to the Next Room , secondly they had no time to listen to any symptoms and were only going to refill my script. That was not correct all they did was decrease it another 15% as per government regulation and didn’t even do what we talked about doing. I said I’m not sure I could do that and it’s the truth to the doctor’s assistant as the doctor left the room and filled the script unlike we talked about and refused to re-enter the room. Enough about me, we all who are above the 100% mme mark are either going to be able to Buck Up or something we reserved to a old dog, being put down. My GP says I need to make friends with my severe neuropathic pain . Friends are gone and family doesn’t want to hear . Thanks for the article and let’s get talking before the next life is lost! It might even help the depression that is to be expected with a genocide threat.

  28. Anonymous 2 at 12:28 pm

    I am at suicide’s door once again because when you suffer chronic pain and NO DOCTORS want to help you, the only help I can get is a Pain Management NP, it brings me to the door because I am going through to much pain and not getting enough relief which leaves me very very tired. It is hard to put on a smile for my spouse when I feel broken inside and out. My pain is tearing me up with no relief in sight other than my death. I have been going to these manatory classes on how to not think about pain (How does one not think about pain when it is screaming inside my brain so loud that I can’t hear anything else.) I am told that if I miss a class that I will not be able to get my pain medications. Then during class our NP comes in and tells us that our State and our insurances are dropping or drastically lowering our pain prescriptions and there is nothing we can do about it so learn from this class on how to deal with our pain. WHAT! How does one do that????? I am so low in spirit right now, I am trying to hang on BUT………… there is nothing left behind the rainbow. There is no treatment out there to relax some of my Pain, the only thing that has helped me is my pain pills. If I use pot or kratom or alc0hol, I will be dropped from my pain management NP. So what is there for me to use to stop the screaming in my brain that is crying out PLEASE SOMEONE CARE AND HELP ME, I AM WORTH IT< DON'T TURN YOUR BACK ON ME…………..So other than those that are plagued like myself with unrelenting Pain, no one cares at all…………..They tell you to hang on there but for what?

  29. Richard A Lawhern,PhD at 11:53 am

    Lisa, thanks for a very feeling and insightful article.

    In a way, we are all — patients and their friends and the medical professionals who try to assist us — a bit like the blind men trying to describe an elephant. We all come to the task with our own perceptions and needs and (inevitably) blind spots. It can be tempting to project our perceptions upon others and to resent when they don’t “get” (or agree with) what we’re saying or feeling. What a difficult job listening can be.

    I come to this article from a different perspective than some others who have commented. I’m the spouse and stepdad of pain patients, but I don’t deal immediately with physical pain myself. Instead, I see my wife and daughter dealing with the pain as I look on “from the outside” and try to help from the periphery even when I can’t make the pain go away.

    One of the ways I help is by advocating for people in chronic pain communities. I “touch” about 30,000 people in 60 Facebook groups, and I publish extensively on public policy for the treatment of pain. I first engaged with issues of medical policy and practice standards about four years ago, in an article for an online forum called “The Global Summit on Diagnostic Alternatives” hosted by the Society for Humanistic Psychology. My title was “Psychogenic Pain and Iatrogenic Suicide”. (see http://dxsummit.org/archives/1002)

    My premise was that by the simple act of assigning a diagnosis code for psychogenic pain, medical doctors will directly contribute to a 250% increase in risk of suicide. The mechanism in this remarkable increase is the impact that such a code has in effectively denying the patient further testing and assessment of un-diagnosed medical symptoms — and thus denying both treatment and hope.

    Such an increase in patient distress and danger is profoundly unethical behavior on the part of doctors. If it were up to me, the entire field of so-called “psychosomatic” medicine would be abolished as a toxic mythology. No more “it’s all in your head”.

    Where pain and its management are concerned, nobody knows it all or has one-size-fits-all solutions. Certainly not me. My message to doctors is “neither do you — so LISTEN and believe what your patients tell you.” This message necessarily flies in the face of doctors’ business model, dictated by insurance companies concerned primarily with profit rather than patient welfare. But I will continue bearing witness to the need to listen.

    Regards, Red

  30. Ibin at 10:59 am

    Dot/Gov, HHS, CDC, FDA. and DEA needs to be held accountable monetarily though this does not ease the pain caused by a family member ending their lives due to lifetime continuous pain and the un mnanged pain issues caused by these among other agencies when our pain issues WERE being better managed, at least mine has for 23 years. No negative health issues caused by appropriate pain management until the CDC “policy” became an enforced compliance with DEA. I lost my Father about 7 years ago to suicide and he did suffer with neuropathic issues. My younger brother overdosed 14 years ago though I believe it was accidental. It was known that he had illicit substances, and alcohol as well as some prescribed medication in his system at the time of demise yet, NO ONE in my family holds prescribed medication “at fault”. He also was injured several years before his overdose and suffered with “chronic” pain. HOW can un managed pain now be better for patients than well managed, documented prescribing from our providers?

  31. Laura Robertson at 10:43 am

    I can completely relate to this. My heart aches for all the suffering people who are being misdiagnosed, misjudged, mistreated, and unheard.

    I have, in the past, been actively suicidal and hospitalized. When I thought about trying to spend the next ten, twenty, thirty years like this? In often extreme levels of unmanaged, unacknowledged pain, severely sleep deprived and experiencing the cognitive impairment that goes along with intractable pain and ongoing sleep deprivation… add in the heartbreaking isolation of losing virtually everyone around you as their life goes on without you, and you have someone who is at high risk of suicide.

    Chronic pain is not just a serious physical health issue, it is a major mental health issue, and it can be life-threatening. It is past time that our health “care” system, media, politicians, family, friends, loved ones, and strangers were educated. Who should do this? The experts should. And who knows more about chronic pain than we do? Absolutely nobody.

    I’m doing everything I can to make our policy-makers understand that we are in the midst of the most massive health care crisis of our time. We need to not just talk amongst ourselves, which is so very important, but start writing to our politicians. Tell them our stories. Make them hear us.

    And hold on, it can get better. Just keep fighting…

    *hugs*

    Laura Robertson
    chronicpain@bell.net

  32. Sue McManus at 10:12 am

    I feel this myself. I’ve had crps for almost 13/years now. Just 2 days ago I wished I could just quit. The pain got to be too much. I was chastised for saying I wished I could sleep. How selfish. But no one can understand how bad I feel. How I hurt. I won’t do anything to myself. But how I wish this pain could just be gone. One away or another.

  33. JoDawn at 10:09 am

    Dear Lisa,
    First, I am so sorry for your loss. It’s always heartbreaking to lose a friend, but to lose someone to suicide… that’s a whole different kind of hell.

    And second, wow. When you hit something on the nose, you really whack the heck out of it! This is an incredible article. Thank you. I hope that the process also helped with your grief.
    God bless.

  34. Kathy C at 9:52 am

    The current response to all of this is really terrifying. Our Society has not only let us all down, they have isolated and stigmatized us all even further. The one sided ‘News” coverage of the “Opiate Epidemic” barely mentions pain at all. Nealy every sensationalized “News’ Story covers the tragedy of “Drug Addiction.” They almost never mention pain at all. These stories are left out of the dialogue.
    The current misinformation about this topic does not mention how isolated people with pain are. In some cases their families believe the hype presented by the Media, further isolating pain patients. It is difficult to engage with people anymore, becasue any mention of pain, can lead to a patronizing lecture about “Drugs,” by a misguided person who thinks they are helping.
    I have been avoiding contact with the people I know with pain, fearing that the next phone call will go unanswered and I will hear they are gone. This isolation and invalidation has led to people appearing anti social, odd or abrupt. Some have had their lives ruined by the Alternatives. Any human being denied sleep for weeks or months appears odd, so they can then classify the pain patients as mentally ill. The Industries found that this portrayal invalidates all of us. We are no longer in pain, we are just confused.

    This did not happen by accident, it was deliberate. The Industries could not have us communicating online pointing to the corruption and deficiencies in our Medical System. They had to flip the narrative. By isolating and stigmatizing all of us, they shut us down. It is entirely possible they researched this. They found that this false narrative is more profitable and points to our inadequacies, rather than the abject failure of the Medical Industry, Corruption and dysfunction.

  35. Denise Bault at 9:10 am

    Having lost everything and pretty much everyone, I so feel for you. I’m so sorry for the loss of your friend. I.too, think about suicide. What person with chronic pain doesn’t? It’s a daily struggle…and for most of us it’s not getting any better. Nor does it seem like the medical community will ever find a way to give us the relief our bodies and minds are screaming for. What a horrible way to live.

  36. Dave at 8:20 am

    Could not have said it better!
    We can see it in action with Tom Petty’s death. He may have thought when trying to
    relieve his unbearable pain that what is worst thing that can happen to me. Living with this constant pain rest of life or permanent relief. I think it may have been accidental but we all know how much better we function when our pain is adequately controlled and he wanted to feel like a normal person again. Like all humans.
    Thanks.

  37. Kathy Coldwell at 8:13 am

    How sad this is but how easy to understand. Living with pain every single day and not knowing if it will improve or if you will feel any relief is exhausting. It remains hard to believe that someday there maybe something that will really help. Sometimes we know we exhaust our family and friends and feel we must be silent. Thankfully there are avenues where we can reach out to others who do understand. There are also days we hear of new solutions that are close to being released and we dare to believe that maybe help is around the corner.
    I pray that we all continue to reach out and find those willing to stop and give us a listening ear or a hug. Then we in turn can find the energy to give that to someone else in need.

  38. Anonymous at 7:54 am

    Good, let’s have this conversation. It’s difficult, but it doesn’t mean we shouldn’t talk about it. Quite the opposite.

    Over the holiday, I tried to have this conversation with my father. Not about me, but about my mother. Mom and I both have chronic pain. I love her. I care. I’m not naive, though. I know she’s thought about suicide. It’s unspoken. She’s in far worse pain than I am, and I’ve wondered about my future… how I can endure.

    Why would I want to upset my father? Why would I worry him?

    This is very difficult to talk about, but I take it as a sign that we need to make a change. My father has become controlling. He cares about mom. He doesn’t want her to go out, though. (She had a very serious health issue that scared us both). I try to talk to dad about how important it is that she maintain her mobility. It goes in one ear and out the other. I try to talk to dad about how he talks to mom, how he puts her down. He seems to think he’s joking or that she doesn’t take it to heart (“she knows I love her”).

    No, dad. I’m not so sure. There are times what he has said to her has broken my own heart. And I want to scream, and I want to shake him.

    So, I tell him… that I’m sure mom has thought about suicide. And that I have. And he needs to think about how what he says can be hurtful to someone already dealing with the burden of chronic pain.

    I see his face. He can’t get past the word: “suicide.” He’s utterly terrified. He yells at me for making him think… for making him “look at people and wonder if they’ve thought about suicide.” Yeah, I get that it’s too much to bear.

    Not talking about it doesn’t make it “go away.” It doesn’t undo reality. I feel guilty discussing something so private with him when he can’t understand. It wasn’t for me to discuss how mom feels. And yes, I told him I thought about it, but no, it’s not in my plans.

    I felt shame for upsetting him like that, but also… I felt betrayed. And I understood… that the person who is having these distressing thoughts isn’t guaranteed support, reassurance, comfort, shared tears and reaffirmation of their worthiness. The fear that surrounds the subject of suicide only serves to further isolate the people who feel desperate and alone already.

    There’s still a chill in my heart, to know that dad and I are further apart now. That I cannot have this discussion… ever. That I’ve done harm, merely by trying to be honest. Suicide as a subject doesn’t phase me like it should, I suppose. It used to. I had that luxury. Part of me is shocked that I’m not more upset. I’ve changed… this much. And I’m this much further away from people who can’t fathom how I feel.

    I’m grateful there is a chronic pain community. I’m sorry we’ve been hurt and that there are probably people relating to what I’ve said about my parents’ relationship. I’m sorry there are other people who understand, just as much as I’m validated by it and comforted by not being alone when I do feel like I am alone. We can help each other. Thank goodness for that.

    I used to feel resentful because “people without pain can never understand.” Well, I wouldn’t wish this knowledge on them. There’s a side of me that’s a bit darker, that’s very honest and raw. And I can’t let it out in public.

    I just wish I could have had that conversation with my father. I wish he could see how things could be better — how he can help us change things so that life might be a little easier on my mother. He’s hurting her and it cuts us both.

  39. Michelle Gould at 7:51 am

    Wow, that was such a sad but accurate article. Your words are so spot on! How do we make her passing mean something? None of us who suffer from chronic pain want to play the Political game. That in it self will never get us close enough to give us our rights backs. To give us our opioid treatment in it’s entirety back. If, with the help of our Doctors we can be treated individually and we can receive the treatment which is beneficial to us then we can have the tools and the strength to move forward. I can only hope we can find an Attorney that can file an injunction on our part to stop the CDC and other agencies from taking our right to compassionate care away from us and give us a chance to prove we have a right to any treatment available to us. I love life & let’s all come together and prevail. God Speed!

  40. Mareaeric Campagna at 7:34 am

    Liza, I am so very sorry for your loss. How horribly sad this world has become. It was as though you had written down my exact thoughts, feelings and points concerning this pathetic truth that is happening. Where is the love and concern we are to show to others, especially those who are sick or needy? I can hardly wrap my head around this or even understand it anymore. I am an individual, as described above. One with chronic pain on a daily basis for 17 years. Somebody come to our rescue for the love of everything holy!

  41. Skeeter Langley at 7:13 am

    Wow, that story hits home. Thank you for sharing it, I believe that most if not all chronic pain suffers have been to that point. After 14 years of RSD/CRPS I have been there a few times. I found in my case that nobody wanted to hear about RSD and what it was doing to me, at my job, home and friends.
    I eventually lost my job, my home and got divorced and filled for bankruptcy, it couldn’t get much worse than that. Through all this I thought about ending it many times.
    Thankfully I had the opportunity to move away from that toxic environment, so I packed up what few things that I left and moved. It was difficult at first, finding new Doctors and feeling home sick. I was able to be with my mom before she passed away, all though it was difficult, I was thankful that I had the opportunity to spend time with her. I have learned to except my condition and I don’t expect it to ever get any better, I have come to a point where I don’t care about anyone that wants to judge me.
    It has been a difficult 14 plus years this is who I am, take me or leave me. Unfortunately we the chronic pain community have a new fight, the war on opiates has become a war on people with chronic pain.

  42. Jennifer Reed at 4:52 am

    I have been fighting multiple autoimmune diseases with co-morbidities for 30 years now; I do understand the thought process of not having the ability to endure, fight pain from our bodies & the added emotional distress heaped upon us by the very physicians who are supposed to be helping us. The rate of suicide from pain patients is rising but it’s not being discussed anywhere outside of our support communities. Why, I wonder?

    There is no such thing as “health care” anymore in our country. Doctors are more concerned with liability & we’re left to fend for ourselves…& that’s a life filled with suffering instead of living, with little hope when we know these diseases have no cure & there’s only so many times we can keep picking up the pieces of what’s left of us & put them back together again. I’m sorry to hear about this & each suicide, & I believe it’s past time to make physicians take responsibility for their actions & inactions.

  43. Drew pavil at 4:51 am

    Its insane that Drs and politicians worry about chronic pain patients becoming addicts or dying from overdose, but miss the issue of suicide. When Im in pain, I wake up each day wondering how much longer Im going to have to suffer? I wonder how many “overdose” deaths were actually suicides?
    Its best we dont know that answer.

  44. Clyde Michael Castle at 4:08 am

    I was diagnosed with chronic pain , in 2009 , since then it has been bedlam , Tue drugs are not working , the pain is increasing , and now I can understand why people want to take their life ? I am n about eight different drugs plus the strongest opiod , my body has become used to these drugs , even four tines the strength of THC isn’t working ?

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