Tuesday, March 20, 2012

Anatomy of a Myth: Antimedication and Antipsychiatry Nonsense

I wanted to share this video with you, because it seems like an interesting, different approach to psychosis, this therapy mentioned in the video called Open Dialogue treatment. While I say it's interesting, I'm not saying I would endorse it as a good idea. But I am quite intrigued by the claim they make in the video that the majority of the people with this  treatment get better before their psychosis can truly take hold, and they only suffer one episode.

Wow, if only a couple of days of psychosis could have been the end of my nightmare, rather than seven years of psychosis, I would certainly have been grateful for the help.

Trouble was, when I was psychotic, like most psychotic people, I did not know I was psychotic. Neither did my family. So there is no way that I would have ended up getting this type of treatment even if it was available in the United States, which I'm not sure it is.

Then, the other reason I posted this video was because after watching it, I started glancing through the related and similar videos on Youtube, and they were all "antipsychiatry"diatribes. One was a song with a young man singing about how psychiatry is bullshit. You can see his lovely, "Bullshit, antipsychiatry, anti-medication song" here:

My two cents on that guy is that if he's smelling bullshit everywhere it's probably an olfactory hallucination that might be helped by a nice dosage of some Seroquel, and he needs some really fast.

But really, people posting videos like this bother me. It isn't that I'm against free speech, or the freedom to explore the dangers and the down-sides of medications. To the contrary, I know there are many bad side effects. I gained 100 pounds from medication. It deeply affects every day of my life when I look at my body and see that weight that I can't seem to shed, especially since I was anorexic for ten years when I was younger.

But for all of the truth about negative side effects, and the criticisms of Big Pharma, there are also a lot of wackos trying to convince people to go off their medications. And I see, frequently, unstable people posting on internet forums and blogs about how they have decided to go off their medication. I certainly believe you have the right to do that if you so choose, but please, please be informed of what you are doing. And please don't tell me about how medication is evil. You have not lived my life, just as I have not lived yours. And I really don't give a damn how many people think medication is evil, because, you see, I have personally lived through medication transforming my life and allowing me to function whereas I previously could not function. And my experience with that, my positive experience with medication, far outweighs anything I would believe in any book written by Robert Whitaker or the like.

I am not working for Big Pharma, and have nothing to gain by telling you this. But my truth is that when I was not on medication, I lived through years of total torment. It was hell. It was something I would honestly not wish on my worst enemy. I am talking about constant, daily delusions that were deeply held for years, constant auditory, and many visual hallucinations, and constant paranoia. I am talking about suicide attempts like buying a .357 magnum and putting it, loaded in my mouth ready to pull the trigger, about trying to drive a car over the top of a 150 foot high bridge, about overdosing on so many pills I was unconscious for days afterwards. In other words, I would be dead if I had not gotten better instead.

But I did get better instead, and I got better because of medications that worked for me.

Last semester, for those of you who read my blog back then, you might recall Iwas having a psychotic episode and experiencing a lot of problematic symptoms that caused me to consider dropping out of college. When I got on 80 mgs of Latuda, that went away. I am still in college, and I am doing fine. I get good grades, and sure, I procrastinate and do everything at the last minute, but I'm not in class hearing voices this semester like I was last semester. Because I am doing well now.

And for all the times I do well, for all the days I can simply go to work at my menial, part-time job, like anybody else could, for all the days I go to my university, for all the days I go to NAMI meetings or NOW meetings, for all the times I go shopping, or to the movies, or out to dinner with a friend or with my mom, I am grateful. I am grateful for the ability to cook and eat food and not have it seem complicated *(although I admit I mostly microwave stuff). I am grateful that I don't spend my time going to doctors trying to convince them to admit to me that they know I'm pregnant, like I did for four years when I wasn't pregnant. I am grateful for all the phone calls at my job during which I do not hear anyone talking about concentration camps like I have heard in the past. I am grateful that I have money now, and I can pay my bills and keep a roof over my head and own possessions, which I could not do when I was floridly psychotic for years. I am grateful for these things which medication has allowed me to have.

These are the benefits of medication. You might get better. You might go from hearing and seeing a total nightmare all around you and living in an unreal world for seven years to an improved state where you can function in society and live a decent life, experiencing happiness sometimes. You might be happy that you are alive when you used to constantly long for death. You might get better. I have gotten a lot better due to medication, and I appreciate that fact. I will not allow my reality to be dismissed by these people who post their anti-psychiatry, pro-scientology, anti-science, pro-myth, videos on youtube, or their rants all over the internet.

I admittedly haven't read Robert Whitaker's book. But there is a reason for that. I know what my life has taught me, and I don't need to read a book to hear that I am somehow completely wrong and these meds are poisoning my body and ruining me forever. I prefer not to read things like that. I might read it just out of curiosity and to hear whatever people are talking about when they discuss this book, but I will never buy into junk science or believe that my life and what I know about it doesn't count.

Friday, March 09, 2012

Letter to my Senator: Advocacy Works

In the State of Florida, where I, unfortunately, live, every year pretty much we hear that the legislature is going to cut the mental health services budget by millions of dollars. And for the past few years, when I would hear this, I would write letters. Most recently, the threat was $100 million of budget cuts coming down on mental health and substance abuse services, in a state where services are already very underfunded. So I signed a petition, sent it out by email to all my friends and family members, and posted it on Facebook. Then I wrote a letter to my local state senator.

Before you read this letter, I want to clarify that I was not homeless all the time for years. I was homeless intermittently for years. I lived in three shelters, as I said in the letter, but I only stayed a couple of months in each one. So I wanted to clarify that, because after writing this letter in the middle of the night, I realized that someone reading it might think I was claiming to have been homeless all the time for years.

Now that I've clarified that for the readers....this is the letter I wrote to Senator Jones. One of my NAMI advocate friends suggested publishing it somewhere. So here it is.

And the budget did get cut. But by approximately $2 million instead of $100 million, so that is, in its own small way, a victory of sorts. I found that out tonight. I sent this letter a few days ago.

Dear Senator Jones,

I am writing to ask you to vote against the proposed budget cuts to the adult mental health services in the state of Florida that have been proposed by the House and by the Senate. If there is still time left to cast a vote on this issue, I hope that you will vote in favor of your constituents such as myself. I live in Clearwater, and I am a registered voter who regularly votes. I am also an active member of the National Alliance on Mental Illness in Pinellas County, an advocacy organization which works to create awareness about mental illness and provide support for families experiencing mental illness.

My reason for being involved in NAMI is personal. I nearly lost my life to suicide on several occasions due to a serious mental illness called Schizoaffective Disorder. This disorder causes psychosis, including delusions, and auditory, visual, olfactory, tactile, and other types of hallucinations, which people sometimes simply refer to as "hearing voices" or "seeing things". My life was an utter nightmare from hell for seven years while I was undiagnosed, untreated, and floridly psychotic. I could not work, go to college, have friends, or keep a roof over my head for long. I lived in three different shelters over that period of time. I also lived in my car for several weeks.

Today, thanks to treatment at (Name Deleted), which is a community mental health center, I have regained my sanity. I take medications, many of them, and I take them religiously. I get injections at the community mental health center, and I see a doctor there, and a therapist. I have also had a case manager there for six years who kept tabs on me wherever I lived and whatever I did with my time. I returned to college and graduated from St. Petersburg College in 2010, finally, at the age of 34, because I was too sick to do so when I was younger and wandering around aimlessly delusional. I now attend USF in St. Petersburg, where I am majoring in Social Work and Political Science through the Interdisciplinary Social Sciences program. In my spare time, I volunteer with NAMI doing public speaking to community groups, and to law enforcement officers from every police department in Pinellas County through the Crisis Intervention Team Trainings that are held twice each year in our county. I tell these people my story, and I tell them what it is like to be psychotic, so that they can better understand what they are dealing with, when they come across a psychotic individual, and hopefully be able to prevent any unnecessary violence or force. I tell them that the police saved my life from one of my suicide attempts, and I appreciate their work.

Senator, I lived alone in a lonely life, which was pure hell, for many years. I do not ever want to go back to that life again. But the community mental health centers are already stretched thin for funding. I lost my therapist of four years because Medicare wouldn't pay for me to see her anymore, and they had no other way for me to see her. I now have a new therapist, but I would have preferred to stay with the one I had who knew all about me, and my lengthy history, and my symptoms, and was able to help me deal with my symptoms and use logic and reason to bring myself back to reality when I was psychotic. Due to limited funding, I could not longer see this therapist as of a few months ago. She was my lifeline.

My other lifeline is my case manager, who is closing my case this week, because, due to limited funding, she cannot keep cases open for too long after people are no longer being hospitalized, and I have not been hospitalized in four years. But the reason I have not been hospitalized has been, in part, due to this very help I was receiving. Having this case manager in my life changed my entire existence. I finally had someone who I could rely on to advocate for me when I needed help after I got connected with Tynkr *Last Name Deleted, my case manager in 2005. I have been supported by her in myriad ways since that time, and I could continue to use her support indefinitely if the funds were available for her to have time to keep my case open. But she has too many other clients who need her, due to limited funding, so they have to close my case. I will now not have the support that I had before from my previous therapist and my case manager. I worry that I will deteriorate without this support.

Senator, I am a person who is extremely committed to recovery from my illness. I get an injection of medication every two weeks, and I take approximately eleven pills per day. I go to therapy weekly, now that there is a new therapist who accepts Medicare. I do advocacy work. I write a blog about my illness to help others. It is called Suicidal No More: Choosing to Live with Schizoaffective Disorder.

I am writing to plead with you to work to prevent the cuts in the mental health budget that are pending, in any way that you can do so. There are countless people in Florida who need help from community mental health centers. I know many people who rely on them as their lifeline, like I do myself. I also live in an apartment owned by community mental health center, name deleted, and since it has limited funds they had to close two of their facilities last year, and the apartment that I live in is in a very poverty-stricken, unsafe neighborhood. But it is all I can afford to live in and the agency doesn't have the funds to build any apartments in safe neighborhoods in nice parts of town, so all of their apartments are in unsafe areas of St. Petersburg or Clearwater.

We are already suffering from a lack of funding for mental health. We cannot afford for this situation to get any worse. One out of every four Americans suffers from a mental illness. There are many of us with serious mental illnesses, such as Schizophrenia, Schizoaffective Disorder, and Bipolar Disorder.

Please do not let the Florida Senate hang us out to dry, casting us off as if we are nothing and not people who matter. We are your constituents. Many of us vote for you. I do not want to be discounted. Please vote against the budget cuts!

Thank you kindly for your time and attention.


Jennifer *Last name deleted
Member, National Alliance on Mental Illness of Pinellas County