If I did not have access to pain meds, I would not be able to work and I would likely commit suicide.
I have tried everything: physical therapy, chiropractic, heat, ice, acupuncture, massage, NSAIDs, epidural injections, radiofrequency ablation, surgery, TENS units, yoga, t’ai chi, even an implanted spinal cord stimulator. That thing worked only until I had a lumber fusion; then the battery pack was more painful than other parts of my body so I had to have it removed. Ultimately caused more trouble than it resolved.
My sister, who lives in a small town, cannot get pain meds from her primary doc because he’s afraid of the DEA. So she now has to travel 100 miles every month to a big city, just to get a paper prescription.
Neither of us is on a high dose of meds: just Vicodin. We’ve both been stable on these meds for a long time, with an occasional bump for things like travel. I used to be on a lot more meds but tapered myself down to the lowest possible dose on which I can function (work). I used to get my meds from a pain doc, who counted my pills every month and reviewed prescribing information. She also drug tested me every month. I finally fired her after she got furious that I had gone to the ER (I had pneumonia) and they gave me a few pain pills because I separated ribs coughing. She thought I was drug-seeking. I had missed three weeks of work from that illness.
Now, fortunately, my PCP prescribes my pain meds. She drug tests me once a year because she has to, and I am on a pain contract but she’s not all freaked out about it. She doesn’t question my judgment; she knows I will stay on the lowest possible dose. But I am really tired of being treated like a dope fiend at the pharmacy. I even once had a pharmacy that routinely shorted my narcotic pain meds, knowing I couldn’t complain without sounding like an addict. I am also fortunate to live in a state where they will treat post-surgical pain fairly aggressively, at least for 10-14 days post-op. It’s also a right-to-die state. I know it may come to that some day but I hope it’s a very long time, assuming I can get adequate treatment.
This is truly terrifying. And anybody who understands the mechanisms of trauma wouldn’t recommend getting rid of the memories. It is not the memory itself that causes such long-lasting effects; it is the worldview and other associations that create difficult behaviors. Without the memory, all that’s left is difficult behaviors that we don’t understand. I don’t trust any of this so-called science; I had a spinal cord stimulator implanted to relieve serious pain, but nobody told me there were other, less invasive alternatives. I eventually had the stimulator removed because it caused its own pain. I also have a dear friend whose DBS made Parkinson’s worse, not better. Very creepy and scary.
Washington State has had a similar law for some time. Their law makes 13 the “age of consent” for mental health, substance abuse, or reproductive health. NAMI hates it. They always want to be involved. Of course, it does mean that young people “consent” to “treatment” that they don’t understand and that they don’t have fully explained to them. I approve of this age of consent for reproductive health, and maybe even for substance use, but it’s highly problematic in mental health when the only alternative is drugs.
I love how the drug companies always say that suicidality is only for children, adolescents and young adults. I was in my 40’s when I experienced terrible akathisia and a strong compulsion to end my life while taking an SSRI antidepressant. I called my doctor to tell him I was considering ending my life–of course left a message, and nobody ever called me back. Fortunately, I realized by Day 4 that it was an additional effect of the meds–and stopped taking them. I spent another four or so days white-knuckled alone in my home, trying desperately not to hurt myself or anyone else. As for the assertion that suicidality can be caused by depression, it had not occurred to me prior to taking this drug, and once it left my system the compulsion left with it. I know how it feels to have that drug-induced compulsion, and I would do anything in my power not to take any of those drugs ever again.
Ted, I’ve had the same issues with Alternatives for many years. However, it’s the reason I support NARPA (National Association for Rights Protection and Advocacy) every year. We just had our annual conference in Seattle. Tina Minkowitz was there; we had a panel discussing how to combat the Murphy bill; there were leading disability rights attorneys, advocates and educators; Paula Caplan allowed us to view the first cut of her new movie as well as giving a wonderful keynote; David Cohen also talked about his latest book; Jim Gottstein discussed his latest work; and Irit Shimrat gave a rousing opening keynote. Next year NARPA’s conference will be on the East Coast, and I invite anyone seeking a home as a dissident to check it out. Dates and locations should be posted on the NARPA website by December at http://www.narpa.org.
NARPA is the only conference I’ve attended where nobody really cares who you are. Those of us with psych histories are not second class; we are all in the struggle together. We welcome others to join us as we continue to push for humane responses to human struggle.
Sera, I’m so happy you tackled this issue, and from this particular perspective. Two aspects of your blog resonate with me. First, the notion that a person who commits suicide must necessarily be “mentally ill.” As someone who has lived with chronic pain for many years, and it’s only getting worse, it is something I think about from time to time. While I know I’m not nearly there yet and there are many avenues to exhaust before I reach that point, I fear most the helplessness that would remove any choice I might have about whether I live or die, whether I am forced to take medication, etc., etc., etc. Sometimes suicide is the rational choice.
I spent many years of my (earlier) life thinking about suicide often–several times a day. I knew better than to tell anyone because I knew I would be locked up, and I had seen my father locked up in the state hospital in the 60’s, treated with Thorazine and ECT. And so I struggled with it. When I first mentioned it to someone in a peer support situation, they helped me sort through it: is it a thought or a compulsion? Just a thought. Okay, so it’s certainly always an option, but do you need it right now? No? Well, let it go then. After that, it became easy to see it as a thought, an option I didn’t need right now, and to say good-bye to it for now. How much easier might my life have been if I had had a place in which to talk about it years earlier?
I so respect your Alternatives to Suicide group and wish we had one here.
Dr Ragins, I find it interesting that you focus on the losses experienced by those of us forced into the “mental health” system. Certainly we experience multiple losses: layered, repeated, and increasing over time. Instead of having our losses acknowledged so that we can grieve, we are told we are “depressed” and given another prescription. Acknowledging loss and allowing people to grieve can be powerful steps toward recovery.
I also agree with the direction you are taking with regard to hearing voices. I was fortunate to be trained in the model of Hearing Voices Network, and to have the opportunity to participate in and even facilitate these groups. As you know, we absolutely talk about voices, visions, and unusual beliefs. I began to discuss–and then understand–experiences I had literally never shared with anyone else before, as a result of participating in these groups. I’ve seen that experience repeated over and over again. The Hearing Voices Network model is also one that can–and should–be offered separately from any medical provider, so it often feels more safe to the vast majority of us who are trauma survivors.
I wonder, however, if you are really trying to say that the unacknowledged losses are the reason people sometimes feel suicidal and/or violent on certain classes of meds. Having experienced this very effect from some meds, I can say that in my experience, the powerful urge to hurt myself or someone else had nothing to do with unacknowledged loss, and everything to do with the drug: the feelings were dose-related and dimished rapidly when I stopped taking it. Fortunately, I realized it was the drug because my prescriber didn’t understand akathisia and dismissed my concerns. I was left to figure it out and resolve it on my own.
Thank you so much for including links to the studies. This is a fight all c/s/x advocates have been waging for years, and well-done research is important. Especially to fight the notoriously slanted “research” done by Torrey and TAC. Always glad to have links to useful tools. I hope you write more for us.
Sera: Thank you. Just thank you. Yes, some of us still ddo use that coping strategy, and I’ve had to learn to do it secretly as my best friend made it all about her (“I’m hurt you didn’t come to me.”).
And I love the language play about “normal” (undiagnosed) people living life and facing challenges, while those of us who got labeled are “recovering” (or not), having “symptomatic” behavior, and subject to the judgment of someone who doesn’t even TRY to understand. This, of course, is why others protest when I say I’m “recovered.” I still believe I’m the only one who can judge my behavior, and I’m lucky enough not to be under the thumb of some clinician with power.
Thank you.
In a state where I lived last year, a group of consumer/survivors pooled their money to buy rubber bracelets with the crisis number written on it. The idea was, the police would see the bracelet and call the crisis line to get the person’s crisis plan. It felt a lot like these white cards–except it was their idea! We desperately need more ways and more opportunities to help people think differently about “help” and “safety.”
A number of us have been trying to expose NCMHR from the inside and eventually had to leave because of the lies, manipulation and abuse leveled at us. And it’s still going on as they fight back against Tina Minkowitz’s exposé. Telling the truth is a revolutionary act. Just because they fight back is no reason to stop telling the truth.
If I did not have access to pain meds, I would not be able to work and I would likely commit suicide.
I have tried everything: physical therapy, chiropractic, heat, ice, acupuncture, massage, NSAIDs, epidural injections, radiofrequency ablation, surgery, TENS units, yoga, t’ai chi, even an implanted spinal cord stimulator. That thing worked only until I had a lumber fusion; then the battery pack was more painful than other parts of my body so I had to have it removed. Ultimately caused more trouble than it resolved.
My sister, who lives in a small town, cannot get pain meds from her primary doc because he’s afraid of the DEA. So she now has to travel 100 miles every month to a big city, just to get a paper prescription.
Neither of us is on a high dose of meds: just Vicodin. We’ve both been stable on these meds for a long time, with an occasional bump for things like travel. I used to be on a lot more meds but tapered myself down to the lowest possible dose on which I can function (work). I used to get my meds from a pain doc, who counted my pills every month and reviewed prescribing information. She also drug tested me every month. I finally fired her after she got furious that I had gone to the ER (I had pneumonia) and they gave me a few pain pills because I separated ribs coughing. She thought I was drug-seeking. I had missed three weeks of work from that illness.
Now, fortunately, my PCP prescribes my pain meds. She drug tests me once a year because she has to, and I am on a pain contract but she’s not all freaked out about it. She doesn’t question my judgment; she knows I will stay on the lowest possible dose. But I am really tired of being treated like a dope fiend at the pharmacy. I even once had a pharmacy that routinely shorted my narcotic pain meds, knowing I couldn’t complain without sounding like an addict. I am also fortunate to live in a state where they will treat post-surgical pain fairly aggressively, at least for 10-14 days post-op. It’s also a right-to-die state. I know it may come to that some day but I hope it’s a very long time, assuming I can get adequate treatment.
This is truly terrifying. And anybody who understands the mechanisms of trauma wouldn’t recommend getting rid of the memories. It is not the memory itself that causes such long-lasting effects; it is the worldview and other associations that create difficult behaviors. Without the memory, all that’s left is difficult behaviors that we don’t understand. I don’t trust any of this so-called science; I had a spinal cord stimulator implanted to relieve serious pain, but nobody told me there were other, less invasive alternatives. I eventually had the stimulator removed because it caused its own pain. I also have a dear friend whose DBS made Parkinson’s worse, not better. Very creepy and scary.
Washington State has had a similar law for some time. Their law makes 13 the “age of consent” for mental health, substance abuse, or reproductive health. NAMI hates it. They always want to be involved. Of course, it does mean that young people “consent” to “treatment” that they don’t understand and that they don’t have fully explained to them. I approve of this age of consent for reproductive health, and maybe even for substance use, but it’s highly problematic in mental health when the only alternative is drugs.
I love how the drug companies always say that suicidality is only for children, adolescents and young adults. I was in my 40’s when I experienced terrible akathisia and a strong compulsion to end my life while taking an SSRI antidepressant. I called my doctor to tell him I was considering ending my life–of course left a message, and nobody ever called me back. Fortunately, I realized by Day 4 that it was an additional effect of the meds–and stopped taking them. I spent another four or so days white-knuckled alone in my home, trying desperately not to hurt myself or anyone else. As for the assertion that suicidality can be caused by depression, it had not occurred to me prior to taking this drug, and once it left my system the compulsion left with it. I know how it feels to have that drug-induced compulsion, and I would do anything in my power not to take any of those drugs ever again.
Ted, I’ve had the same issues with Alternatives for many years. However, it’s the reason I support NARPA (National Association for Rights Protection and Advocacy) every year. We just had our annual conference in Seattle. Tina Minkowitz was there; we had a panel discussing how to combat the Murphy bill; there were leading disability rights attorneys, advocates and educators; Paula Caplan allowed us to view the first cut of her new movie as well as giving a wonderful keynote; David Cohen also talked about his latest book; Jim Gottstein discussed his latest work; and Irit Shimrat gave a rousing opening keynote. Next year NARPA’s conference will be on the East Coast, and I invite anyone seeking a home as a dissident to check it out. Dates and locations should be posted on the NARPA website by December at http://www.narpa.org.
NARPA is the only conference I’ve attended where nobody really cares who you are. Those of us with psych histories are not second class; we are all in the struggle together. We welcome others to join us as we continue to push for humane responses to human struggle.
Sera, I’m so happy you tackled this issue, and from this particular perspective. Two aspects of your blog resonate with me. First, the notion that a person who commits suicide must necessarily be “mentally ill.” As someone who has lived with chronic pain for many years, and it’s only getting worse, it is something I think about from time to time. While I know I’m not nearly there yet and there are many avenues to exhaust before I reach that point, I fear most the helplessness that would remove any choice I might have about whether I live or die, whether I am forced to take medication, etc., etc., etc. Sometimes suicide is the rational choice.
I spent many years of my (earlier) life thinking about suicide often–several times a day. I knew better than to tell anyone because I knew I would be locked up, and I had seen my father locked up in the state hospital in the 60’s, treated with Thorazine and ECT. And so I struggled with it. When I first mentioned it to someone in a peer support situation, they helped me sort through it: is it a thought or a compulsion? Just a thought. Okay, so it’s certainly always an option, but do you need it right now? No? Well, let it go then. After that, it became easy to see it as a thought, an option I didn’t need right now, and to say good-bye to it for now. How much easier might my life have been if I had had a place in which to talk about it years earlier?
I so respect your Alternatives to Suicide group and wish we had one here.
Dr Ragins, I find it interesting that you focus on the losses experienced by those of us forced into the “mental health” system. Certainly we experience multiple losses: layered, repeated, and increasing over time. Instead of having our losses acknowledged so that we can grieve, we are told we are “depressed” and given another prescription. Acknowledging loss and allowing people to grieve can be powerful steps toward recovery.
I also agree with the direction you are taking with regard to hearing voices. I was fortunate to be trained in the model of Hearing Voices Network, and to have the opportunity to participate in and even facilitate these groups. As you know, we absolutely talk about voices, visions, and unusual beliefs. I began to discuss–and then understand–experiences I had literally never shared with anyone else before, as a result of participating in these groups. I’ve seen that experience repeated over and over again. The Hearing Voices Network model is also one that can–and should–be offered separately from any medical provider, so it often feels more safe to the vast majority of us who are trauma survivors.
I wonder, however, if you are really trying to say that the unacknowledged losses are the reason people sometimes feel suicidal and/or violent on certain classes of meds. Having experienced this very effect from some meds, I can say that in my experience, the powerful urge to hurt myself or someone else had nothing to do with unacknowledged loss, and everything to do with the drug: the feelings were dose-related and dimished rapidly when I stopped taking it. Fortunately, I realized it was the drug because my prescriber didn’t understand akathisia and dismissed my concerns. I was left to figure it out and resolve it on my own.
Thank you so much for including links to the studies. This is a fight all c/s/x advocates have been waging for years, and well-done research is important. Especially to fight the notoriously slanted “research” done by Torrey and TAC. Always glad to have links to useful tools. I hope you write more for us.
Sera: Thank you. Just thank you. Yes, some of us still ddo use that coping strategy, and I’ve had to learn to do it secretly as my best friend made it all about her (“I’m hurt you didn’t come to me.”).
And I love the language play about “normal” (undiagnosed) people living life and facing challenges, while those of us who got labeled are “recovering” (or not), having “symptomatic” behavior, and subject to the judgment of someone who doesn’t even TRY to understand. This, of course, is why others protest when I say I’m “recovered.” I still believe I’m the only one who can judge my behavior, and I’m lucky enough not to be under the thumb of some clinician with power.
Thank you.
In a state where I lived last year, a group of consumer/survivors pooled their money to buy rubber bracelets with the crisis number written on it. The idea was, the police would see the bracelet and call the crisis line to get the person’s crisis plan. It felt a lot like these white cards–except it was their idea! We desperately need more ways and more opportunities to help people think differently about “help” and “safety.”
A number of us have been trying to expose NCMHR from the inside and eventually had to leave because of the lies, manipulation and abuse leveled at us. And it’s still going on as they fight back against Tina Minkowitz’s exposé. Telling the truth is a revolutionary act. Just because they fight back is no reason to stop telling the truth.