Sunday, February 06, 2011

"Inside the Battle to Define Mental Illness", psychiatry as an imperfect science


"Take schizophrenia and bipolar disorder: For more than a century, those two illnesses have occupied separate branches of the psychiatric taxonomy. But research suggests that the same genetic factors predispose people to both illnesses, a discovery that casts doubt on whether this fundamental division exists in nature or only in the minds of psychiatrists."
-Gary Greenberg, Wired Magazine


As someone whose has been diagnosed both with Bipolar Disorder and Paranoid Schizophrenia, and who diagnosis was later changed to Schizoaffective Disorder (a combination of the two, basically), I take interest in the above paragraph. Apparently the formulation of the new DSM-5, the Diagnostic and Statistical Manual of Mental Disorders in its newest, upcoming form, is fraught with conflict. Some doctors believe that there are all sorts of problems with this new edition of the manual. And one, Allen Frances, who was lead editor of the fourth edition of the manual, disagrees whole-heartily with the way it is being written and several of the new diagnoses in it.

His primary reason for this disagreement? New disorders and being created which will, inevitably, lead to many new diagnoses being given, and therefore, many new psychotropic drugs being sold. Essentially, a new diagnosis means millions of new dollars for drug companies. I have a problem with this.

Drug companies are, in many ways, the thugs of modern medicine. They profit on our suffering. They influence research. They influence the DSM, and they influence our leading organizations, such as the National Alliance on Mental Illness of which I am proud to be a member, but a member who is critical of this aspect of the organization. (Drug companies sponsor many of NAMI's fundraisers and programs in a variety of ways that are not completely clear to me, but for example, they sponsor our local fundraisers and newsletter all the time.)

I am grateful for my medication. I am not grateful that if I didn't have Medicare, these medications would be costing literally thousands of dollars a month which I do not have, and therefore, I would not be getting them. Not getting these necessary medications would lead to my death, as it almost did many times in the past, or, at least, to my homelessness and extended horrible misery, as it also did in the past. That bothers me.

There are many people in the United States who cannot afford their psychotropic medications. I have some of these people in my own family. If you have insurance, it does you very little good when the co-pays are too high for you to be able to pay them, so you can't get the medication you need. If you don't have insurance, the only hope you have is to get into a prescription plan run by a pharmaceutical company whereby they will supply you with medication, but the minute you get health insurance of any kind, you lose the ability to participate in one of those programs. So you have to forgo any insurance you might be able to get which you might need to cover other health problems. If you have an income that is not poverty level, you also lose the ability to participate in most of those programs. If you do not keep up with all the paperwork to get approved and to stay in the program, then you'll never be a part of it. So many people are left without medications they need. This is why we have millions of people walking around (and if not millions at least thousands), without the medications they need to function and lead a decent life. This is why we have homeless people lining our streets, suffering from mental illnesses, and not knowing at all what can be done about it, if they even have enough insight to know they are ill in the first place, as many unmedicated people do not.

Medications are not a cure-all, of course. There are many people for whom the meds simply do not work. There are many others who have no desire to take them and choose not to do so, believing that the side effects and dangers far outweigh the benefits. I'm not one of those people. I'm afraid of the side effects - I'm already pre-diabetic thanks to metabolic syndrome caused by my antipsychotic medications, and I am afraid of the long-term effects of these drugs which are as yet unknown, since nobody has been on them for a lifetime yet.

But I know that they have made a monumental difference in my life, taking away most of the psychosis that used to torment me, destroy my life, and eliminate my ability to fully function in the world. They have taken away suicidal depressions too. They have left me able to function as a person who is stable enough to do so, free of the torment of psychotic delusions and hallucinations that confused me and destroyed me in the past to the point that I was not living in the real world. Because of medication, I have a roof over my head, a college degree, a part-time job, a current college career, a few friends, the ability to do some volunteer work, and relative stability. I am not living a perfectly normal life, by any means. But I am far better than I was sans meds. I don't wish to go back to those days without meds, ever, unless some other method of treatment that would work for me becomes available.

Yet, like I said, I am afraid. There is much to be afraid of, and much to be skeptical about. I know there are increasing numbers of people who criticize the pharmaceutical industry and its incestuous relationship with mental health treatment. I know that many people are put on medications because those medications are new, and therefore are making billions of dollars for a drug company which pushes doctors around the country to prescribe them. This has been done to me many times. I went to my first psychiatrist as a teenager, and as soon as a new antidepressant came out, he put me on it. He did not seem to care what the side effects were, and assumed that if something was new, then it was inherently better - a fact I have learned from experience is not true, though it seems to be believed true by many doctors.

I think we all need to keep our fingers on the pulse of medicine. We need to be aware of disagreements like those listed in this article about the new DSM-5. We need to be aware that psychiatry is a very imperfect science, one fraught with discord, and our best hope is to educate ourselves as much as we can about our illnesses and the treatments available.

7 comments:

said...

Thank you very much for this post. Diagnosis is crucial for access to care and, sadly, often a racket. While grateful for my medication and my mental health "team" working with me, I have a tenuous (at best) relationship with the terminology surrounding my disorder. As such, I host an online forum dedicated to challenging external definitions of very internal conditions. Check us out?

definefunctioning.wordpress.com

Thanks again. The link is fascinating.

Ethereal Highway said...

I deeply understand the need for relief. I suffer myself. But Jen, you have blogged about how obese and lethargic you are and how you cannot even maintain basic cleanliness in your apartment. And you are still a fan of such whopping doses of powerful drugs? What about when your diabetes becomes full-blown and you are fully incapacitated due to a stroke or heart attack? Is that okay, too? I don't know how you do it, Jen. I just don't. I hear voices, too. Yeah, sometimes they drive me to a few drinks, but I am not medicated everyday around the clock and I can usually engage with them. And ditching the 'medication' (drugs) restored my health and allows me to take care of myself and my home. I wonder where your support is lacking that this cannot happen for you? While I am very proud of how you keep doing whatever you can manage to do (like EVERYONE dooes, really -- you are 'normal'), I worry for you. Yeah, I worry for me, too, but I also worry for you. You know what I wish? I wish we both had something better than what we have. This is not a criticism, Jen. I like you and respect you very much. I guess I just wish we had something better, you know?

If I could have one wish right now, I wish that I could come help you clean up your apartment and help you get the environment you deserve. I don't live far from you. I COULD and WOULD do that if you ever wanted me to. I guess I just think that you might not like me because we have somewhat different views about psychiatry. But... this does NOT stop me from liking and respecting you. I think you are fabulous. Email me if you ever get in the kind of bind that requires someone who understands to come help you and keep your privacy. I care about you, Jen. I wish that you, me and everyone like us could have relief and still keep our health. We deserve everything good that everyone else gets. We really do.

Can I just say that my heart went out to you when you once blogged about how difficult it was for you to make your bed and yet how much pleasure you took from the feeling of smooth sheets? I wish that you could have that EVERY NIGHT. I guess that is all. I hope my honesty is not offensive to you. I deeply respect you and your efforts and I know how hard things can be. The last thing I want to do is offend you. I hope you understand.

Ethereal Highway said...

Now I am wishing I had not left a comment here because I am worried about offending you and making you feel worse and I don't want to hurt anyone. I'm sorry. Feel free to call me any kind of nasty name in response. But please keep my email address. I PROMISE I will respect you and keep your confidence if you ever need the help of a neighbor who understands mental and emotional anguish.

Jen Daisybee said...

E - how do you make your keyboard do that, by the way? I like your website and posted a comment on one of your threads there. I will be back to visit it again. Thanks for leaving the link.

Ethereal Highway, Wow. Well I suppose if a person does put on a blog that they are obese, they can expect someone to comment on it like that, though usually that has not happened much here. I appreciate your concern. I spent many years anorexic and nearly died of malnutrition in my teenage years, so I am pretty well aware of my weight problem and the fact it is not healthy. I certainly don't like the fact that I have to take medications which caused me to gain all this weight. It is a definite problem that I'm aware of.

But I do have to take that medication. Obviously, you can live without it. I can't. I almost died by suicide numerous times before I was on this medication and I haven't attempted suicide in six years now, because I also haven't been floridly psychotic 24/7 for the past six years. Since I've been on antipsychotic medication which works for me.

You're right, I do have a really hard time keeping my apartment clean, which I have discussed on this blog. On the other hand, I manage every other part of my life pretty well most of the time. I have talked about that stuff here too, not sure if you read those posts. I work part time, go to college, do public speaking, go to therapy, see doctors, volunteer with NAMI, volunteer with a women's organization, take care of my cats, put on make-up and get dressed in decent clothes every day, etc. So it's not like I can't cope.

Anyway, like I said, thank you for your concern. I don't recall emailing with you before, but perhaps we did and I can't connect your name with your blogger name. I have noticed on your blog that you discuss dissociation. I don't have dissociation. I have Schizoaffective Disorder. It is really a lot different, so perhaps we have some things in common but not others. What I dealt with for years was full-blown psychosis. I have never met anybody who was psychotic for years and simply got better without medication, though I certainly do understand why people choose not to take medication for various reasons.

In the Pink said...

I agree with EVERYTHING you have said. The DSM can kiss my ass...personally speaking. And the other comments posted....yeah....umm...no comment on that.

I to have severe weight problems. When I stop my anti psych med I lose weight, but I also become suicidal. I can only assume you have the same issue. SO I too take the meds because they help me not want to kill myself. Hmmm...I hate being fat but it is what it is. So I will keep going to the gym and watching my carbs and keep taking the abilify. Etherial Highway, are you manic right now?

Borderline Lil said...

Thank you for the link to this great article. And for another interesting and thought/reaction provoking post! I, too, don't know (dread to think) where I would be without medication. I'm a definite advocate. Functioning may not be a perfect life but it's a life nonetheless.

Stephi said...

Hey Jen, I have found your site very interesting and very helpful!.
My meds litetally saved me from death itself- I would not be here without them. And I strongly believe that there are people that will need to be on meds for the rest of their life for their health's sake.
But since doing a lot of research on big pharma companies and their relationship with healthcare professionals I have become very cautious. I have been reading excerpts of Robert Whitaker's book, "Anatomy of an Epidemic" online and have been terrified by what I have read about these drugs. I would one day like to be drug free but I also want to live a functional life and if that means having to take meds I guess it worth the risk.

And you are right: psychiatry has MUCH room for improvement...

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