Coming Out: Iatrogenic Illness Awareness Month

Ally Nugent
18
696

Necessity is the Mother of Invention. Our community needed an Iatrogenic Illness Awareness Month, so we created one.

Iatrogenic damage is defined as a state of ill health or adverse effect resulting from medical treatment. As many MIA readers know, it is the third leading cause of death in the United States after heart disease and cancer. We chose October for our month as it aligned with Mad in America’s International Film Festival this year, and I couldn’t think of anything spookier than an epidemic being swept under the rug. We began discussing the details of a profile picture campaign in my online support group for psychotropic survivors. We decided to tell our collective story with a simple image stating: “Your drug may be your problem, mine was.” Some may recognize this as a play off of the book, Your Drug May Be Your Problem, by Dr. Peter Breggin and David Cohen, PhD.

Our main reason for beginning an awareness month is the need for recognition– a yearning to make the word “iatrogenic” and its corresponding language available to our community, and to the greater public as a household name. We don’t have the luxury of raising money for research, racing for the cure, or ribbons. For that we would have to be on the map. Why is it that something this pervasive gets so little traction?

I think it’s because sufferers are made or told to keep quiet, whether it’s from internalized fear or felt bigotry and discrimination. Regardless, when we are safe to do so, I believe that we must come out.

My name is Ally. I am just one in a vast sea of people suffering from post-acute and protracted withdrawal syndrome (PWS) from a benzodiazepine. There is so much misunderstanding about protracted withdrawal syndrome. For one, the withdrawal part is a bit of a misnomer. It calls to mind the psychiatrist I desperately sought out for help who told me:

“Let me give you some free advice [the “advice” was no where near free…] Once a benzodiazepine is no longer in the body, there is no way for it to cause any harm. These drugs have half-lives, you know?”

In a way he was technically right. The drug wasn’t in my body anymore at twelve months off when I sought his help and guidance in my darkest hour. I was no longer “withdrawing” from anything. At that point I was healing from neuropsychiatric drug damage. This is just one example of many in which sufferers from iatrogenic illness are turned away from thevery practice that caused their illness and are left with nothing–no guidance about the future or help with disability, just a stack of generalizations about the ways in which our supposed inherent “mental illness” is contributing to our pain.

That same psychiatrist went on to tell me that my symptoms could be early signs of schizophrenia. This man was not willing to engage in conversation about the culpability of his industry or the fallibility of an imperfect drug, but he was perfectly willing to hand me a new label and drug me into oblivion. There is no end to the list of things wrong with that.

Along with countless other people, I have been left relatively alone with this illness. Since November 2012, I’ve been forced to discover my illness, research it, educate and convince loved ones, find support, educate the public on YouTube (to the best of my ability), combat online-bullying and stigma, and attempt to survive with an invisible illness that society will not recognize. Don’t get me started on the carnage this creates for families, and the subsequent agonizing guilt attached to being a person with an “impossible” illness. I have seen my story online like a ghost story, being retold over and over with different names and places, but always the same underlying crux: psychotropic drug damage. For myself and others, protracted withdrawal syndrome has not been as much of an illness as it has been a haunting–a barbaric suffering that has been described as the inability to feel one’s own soul.

This illness has taken almost everything that once made me feel human and left just enough remaining for me to know I am still completely self-aware, or what some might reductively call “sane”. I can remember before the mountain of symptoms piled on top of me, when I could: drive a car, go into a grocery store, be around new people, make eye contact, walk without a cane, read a book, play an open mic night, and control my bodily functions. These are just visible consequences. Inside of my body I have felt ongoing suffering analogous to symptoms of progressive MS. I’ve experienced ongoing cognitive disruption mimicking symptoms of dementia. The quality of the symptoms has been dehumanizing. There have been spans of time in which I’ve had no ability to find comfort, stillness, or any reason for being. As a young girl growing up believing in the endless possibilities of the world, I never could have fathomed that the reality of PWS had any place within the human experience.

Most of my life I’ve had the activist gene gnawing at me– that feeling in your gut that won’t shut off when you see something has gone very wrong. Before I got sick I lived in the Castro in San Francisco. I worked on LGBTQ homeless youth advocacy, performed in “The Vagina Monologues” for Women in the Democratic Republic of Congo and marched on Washington at the National Equality March. I knew what the protocols to fight injustice looked like. Observe suffering, educate yourself, and find a way to inspire others to care.

It took some time after I became sick from rapidly tapering from a benzodiazepine to realize that this damage is not a private issue, or a singular issue. It’s a human rights violation. What happened to me is happening and has happened to countless others, so this is no longer just my struggle to keep to myself. It belongs to the community of sufferers who weren’t afforded a choice regarding their own bodies. A true choice is predicated upon informed consent, which I believe doesn’t exist. People go to their primary care doctor for restless leg syndrome or to a psychiatrist for panic attacks and take home a benzodiazepine, which, over the course of several weeks, can become a ticking time bomb. They are given no legitimate warning of the complete list of drug effects, and have no ability to fathom the violence that can result from trusting their doctor.

For this, I believe, is what injustice really boils down to: being born or put into a position of violence against your will, whether that violence is emotional, physical, spiritual, or social. For iatrogenic sufferers, the violence is all encompassing. Many of these psychotropic medications have been known to cause involuntary dependence, withdrawal, long-term illness, death, suicidal/homicidal thoughts and in some cases, actions. Iatrogenic illness can lead to sufferers being placed in a psychiatric facility unnecessarily, poly-drugging, unnecessary medical procedures, victim blaming, loss of the patients’ support system, homelessness, and the inability to find understanding or care in the medical community. Behind everyone who has fallen devastatingly ill there is often one or a small collection of caregivers who have to make sure the house doesn’t come crumbling down. The caregivers, too, are left with no place to turn with their own grievances.

I don’t see any difference between the iatrogenic epidemic or any other human rights issue that thrives because of the taboo of speaking out. Let’s face it, speaking out about iatrogenic illness is activism. It takes a certain level of risk, and the rewards are not going to be instantaneous. I still believe when we are safe or ready to do so, we must tell our stories. Creating that sort of radical accessibility to storytelling begins with unabashed solidarity.

There is a need for solidarity amongst those of us who cannot leave our homes to rally and speak out against psychiatry and iatrogenic illness–those of us who are hard-pressed to tell our friends and families the extent of what we are experiencing, or fear that sharing our suffering will have negative consequences for the future. As of yet, the culture of the iatrogenically impaired is fringe. It exists mainly online, behind closed doors, and locked up tight in the families and family histories of those who have experienced its horrors up close. These stories, as horrifying as they are, are not an anomaly anymore. This is happening to enough people that if we work together we can make waves–the good kind.

I don’t want to put it solely to the victims to affect change, but they are the only ones who ever have. And it can be as simple or as complicated as changing your profile picture, telling your story publicly, or answering questions about your experience if people inquire about your profile picture. The profile picture campaign is just the beginning; in the coming years I want us to work on more ways to make storytelling accessible. I cannot wait to see what future Octobers will bring for this community. It’s the perfect month to represent us. The weather softens, the leaves begin to change. We remember once again that all of life is in movement to seek balance, and against all odds a little hope rushes back in.

I want to thank Jennifer Haden, Robin Haden, Nancy Rubenstein Delgiudice, Jeri Tresler, Stephanie Williams, and Sapphire Storm Rose for helping me spread the word about IIAM 2014. I want to thank my family and loved ones for their support– BPM for getting me through each day alive and with dignity. And I want to thank Lacy Mroz for their radical love and for never questioning that this really did happen.

https://www.youtube.com/watch?v=XeL4696tdyI

 

18 COMMENTS

  1. Thanks for doing this and writing this very cogent post as well. I supported this too and featured it and then mentioned it in a couple of additional posts on my blog as well. You’re right…it’s very hard to speak out about iatrogenic illness. When we’re ill the response we get from those who disbelieve the experience can be extraordinarily painful. This is a very particular sort of activism.

    • This is an excellent article that addresses an issue that is generating more and more awareness of the harms of psychotropic medications and the indifference, stupidity, ignorance, and carelessness of the GP’s and psychiatrists prescribing them. The fact sufferers are disbelieved and rejected, often by their families is very painful. The fact protracted withdrawal is usually treated with more drugs and toxic interventions is also very frightening.

  2. Ally – I love what you did with your label in laying claim to getting drugged coercively or under coercive conditions because you were a sensitive person. That’s the right kind of boldness, another good tweak of survivor speech. I totally relate. All the suppressed language about what you feel and think and need and want to change about yourself gets replaced in practice by the constant demand to own your mental illness and give up your free will, on and on. I hope you can get stronger continually and take pride in learning how to explain more and more of what you understood to achieve in terms of growth, in order to be able to do as much as you have so far.

    Funny that there are no rating scales in any service provider offices that are developed for self-reporting whether you believe you can expect to completely overcome iatrogenic damage, the stigmatizing label, and the social abuse for risking your protest statements and consciousness-raising activities about hostile professional “care-providers”.

  3. I thought this article was very powerful, and Ally in her video shows herself to be a very effective spokesperson for this cause. It also makes me realize, if I didn’t before, just how important this issue is to a long-term strategy of getting the public to see just how destructive the psychiatric profession and its drugs are.

    So both to help and vindicate the victims of these drugs, and to eventually end all the abuses of psychiatry, this is an issue all of us should take to heart and bring to public attention as best we can.

  4. Hi Ally,

    I looked at the poster “Your drug may be your problem” and think that had I saw it before I became educated about some of these issues I would have thought “My drug can’t be my problem because I’m on medication”. This little white lie being told by doctors etc, and the lack of understanding in the community at large may result in the message not getting through to some people.

    It was only when I watched Dr Moncrieffs lecture that this difference was driven home to me. And I’ve spoken to social workers who didn’t know there was a difference so…. It would be a shame that this message didn’t get through as a result.

    I can not agree more about telling our stories loud and clear because I feel the institutions themselves are almost training people to be silent about the abuse they are suffering.

    Please keep speaking out about this.

    Kind regards
    Boans

    • Just as an example I have just read a facebook post by an ex nurse which reads;

      “The fact that millions of schoolchildren require medication on a daily basis so they can more easily assimilate into the culture of public schooling does not mean these children are damaged. It means something is very wrong with the whole idea of schooling”

      Subtle, but misleading.

  5. Dear Ally, There is no happiness that can parallel the joy of waking up in the morning and seeing something right and beautiful, and good. This article feels like a moment of Grace. I remember when I sent my article “Badgers Included” to Bob Whitaker and kermit Cole, and a heated discussion ensued over my strong words. The article was published, and the discussion afterwards is indicative of that fear of really facing the scope of torture that psychiatry has perpetrated. This article shows clearly to me that our time is here.Those of us housebound and suffering…….and working our activist tails off can make a huge difference. The power of our voices, and the power of the human spirit gaining strength has amazed me since I was a little girl in the Civil Rights movement of the sixties. Our struggle is the Human Rights issue of our time, but we need to redefine this movement to include everyone, because no one is immune (pun intended) to medical tyranny. There are past victims, present…….Future. The trauma “gifted” to our children from having their mothers whisked out from under them, drugged into an unrecognizable strangers, and told that everything is fine………this violence, silent and insidious, is the kind of torture that can shatter and splinter souls. There is no turning away. People regularly ask me how I can keep doing this day after day. I tell them my work brings me joy. I feel that joy right now as tears roll out of one swollen eye. I’m about to turn sixty this year, and it is women like Ally who give me hope for my children’s future. Thank you Ally. Let’s Do this.

  6. Thank you very much for this beautiful piece! I wish that I had realized that it was Iatrogenic Illness Awareness Month earlier!

    A little over a year ago, I wrote this about my journey through iatrogenic illness – http://www.collective-evolution.com/2013/09/14/a-journey-through-pharmaceutical-induced-illness/ It has resonated with many people and I hope that it helps you!

    Several studies have shown that fluoroquinolone antibiotics – cipro, levaquin, avelox and floxin – do similar damage to GABA-A receptors as what occurs in benzodiazepine withdrawal. Perhaps the stories on http://www.floxiehope.com – a site for hope and healing for those suffering from fluoroquinolone toxicity – can help those suffering from benzo withdrawal. I hope so!

    It is difficult to get all of those suffering from iatrogenic illnesses to band together. People are often married to their labels. I also suspect that many recognized diseases are iatrogenic – autoimmune diseases, fibromyalgia, chronic fatigue, M.E., etc. I wish that everyone would look in their medicine cabinet or medical records and ask, What poisoned me?

    Thank you for your activism!

    Regards,
    Lisa

    • We SHOULD all band together. The problem is, what I see happening anyhow, is that people in the FQ toxicity community are turning TO psych drugs (most likely recommended by some ignorant doctor) that are JUST AS HARMFUL as the FQ they were just damaged by. You won’t heal drug damage with more neurotoxic drugs and you might just make it worse. Of course, some of the psych drug victims get severe withdrawal or drug reactions from, say, benzodiazepines and then frantically start taking APs, ADs and whatever else in an attempt to “fix” themselves as well and wind up, ultimately, causing more harm. I don’t blame these people for being desperate (I am too), but common sense tells one that if a pharma poison is the cause of your destruction, taking another one is probably a terrible idea.

  7. Terrific action, blog post, and video. Thank you, Ally! Iatrogenic injury, standard treatment for “mental illness” labels, is real, and the problem needs to be given much more attention than it has received if it is to ever register on the public radar. There is an epidemic of iatrogenic damage and death in the world, and this information is being suppressed by the people who make there living damaging other human beings.

  8. Hi Ally.

    I hope this community (which I am just discovering today) will include support for those of us in litigation against this death, disease and addiction. It is as if we don’t exist and yet are out there on the front lines continuing to suffer legal abuses in an attempt to stop the abuse. It is amazing how the legal system supports psychiatry blindly (well not really; it is perfectly understandable why this double barrel system is in place.)
    I have not seen but there is a need for plaintiff’s to have a place to share the medical/legal facts we are putting on the record, the legal decisions, ethical doctors and lawyers (:))) who are supporting us so that each lone litigant does not have to reinvent the wheel every time one of us actually MANAGES to get into court.
    Thank you for bringing this critical issue to light. I don’t see the links you mention but will try to find more on this important topic.
    J

    • there is a need for plaintiff’s to have a place to share the medical/legal facts we are putting on the record, the legal decisions, ethical doctors and lawyers (:))) who are supporting us so that each lone litigant does not have to reinvent the wheel every time one of us actually MANAGES to get into court

      Absolutely agree. Maybe MIA could assign someone to create such a compilation?

  9. Humm, I couldn’t even manage a reply by the PTB to put USA or CA beside the contributors names so that people would know what country they were in and maybe have more luck tracking them down. There is NO help to be had. Everyone who is standing in these fights are completely on their own which is yet another reason the education process and accountability to change is slow. A nice thought however.
    Thanks for the vote of confidence. There are movements afoot but they have nothing to do with what is happening here. I will try to find a way to connect with you privately as I would like to make sure you are in the loop on this.
    Cheers.

  10. I’m so happy to see this here. I have PWS and one of the worst things about it is that almost nobody in the general public knows anything about it. So not only does one suffer, but one’s suffering also then gets denied and sometimes even ridiculed by others. This article and campaign (and the videos) are wonderful steps toward changing that. Thanks.

  11. Incase this is new to anyone….
    http://www.certainadverseevents.com/home_page.html
    The New F word (Floxed)
    Certain Adverse Events
    A film by Nancy Edwards

    I personally work towards and encourage others to consider the need to stop creating further separations (by population, a specific drug or other particular causal agent) that serves to further block recognition of and help for the experiences of countless suffers.
    Every time one small piece is championed here and there (as opposed to the totality of all iatrogenic death, disease, addiction and social destruction) other groups of people are left out.
    All causes of iatrogenic injury should be considered as part and parcel of the problem regardless of what the mechanism of cause or the specific age of the population affected.
    The piecemeal manner in which this topic is tipically addressed is unproductive and tends to exclude and ignoring so much of the facts already known and proven to create harm and as such in and of itself creates more harm and leave more victims out.

    I hope that this will be taken into consideration and a way to include ALL people and many means by which they are harmed can be included so that these people will stop being excluded.
    Thank you.

  12. I am down to two meds with rare use of the meds that caused this (Xanax)… Haldol/Ativan and Klonopin. I also take Lamictal which is hell to take and dexedrine which is speed. I used to take one AP, 2 mood stabilizers, buspar and either a ritalin drug or something else. I am decreasing the dose very gradually and planning to get off. I am since of the cost of NAC and milk thistle and coq10 , magnesium and b vitamin complexes just to hopefully minimize any damage. So far, so good. When I was on depakote because with “Bipolar I disorder, recurrent mania with psychotic features it was required, I started it and I had no damage at all.

    I know I am on two meds soon but they are almost gone too.

Comments are closed.