Philip Dawdy at Furious Seasons wrote a very thought provoking post on “recovery” today. Please go to his site and read it–I take excerpts out here, but they don’t cover all that he talks about and it is only fair that you see where I got my ideas to respond from. Also, I don’t trust myself to completely accurately relate his argument here as I have problems with analysis and argument due to cognitive impairment. I want to be fair to him–so please read his post.
His post is particularly thought provoking for me as I see things a bit differently than he does, but I think nonetheless that he has very carefully thought out a lot of things and makes a lot of good points. The thing that is tricky for me is that I can put myself into his line of thinking very easily. I can agree with most everything–it’s just at the same time I feel like there is more. There is more to the picture.
One of the things he starts out with is:
The biggest thing you’ve got to do is accept your diagnosis (and this comes from someone who has issues with some of the diagnoses and diagnosticians), or you are going to be wrestling with yourself for a long time. It’s not worth doing. You know damn well that something is up with you, so what do you intend to do about it?
Well I “accepted” my diagnosis for years. I, too, like Philip, always had issues with diagnosis and diagnosticians but I did, for the most part, accept my diagnosis and took my meds like a good little girl. What went wrong for me is that my psychiatrist loaded me up on drugs. And as Philip points out, this is not appropriate in his opinion nor mine at this point. His observations over the years, as are mine, is that people on more than one or two drugs do not do well. And so, I did not do well either–I was on up to seven drugs at once and working through all that time. I worked with the “mentally ill” as a social worker and I was on more drugs then they were–these “seriously mentally ill” folk. In any case, the drugs kicked my ass and I finally stopped working about four years ago. I blame the drugs–not my “disease.”
So do I still accept my diagnosis. No. And I’ll tell you why. The diagnosis bipolar disorder is a catch-all phrase for a variety of symptom clusters. And it’s a large variety of symptom clusters. Philip says if I don’t accept my diagnosis I will be struggling with myself for a long time. Well I can tell you I struggle with myself less now than I did for the years that I accepted my diagnosis. Since I’ve taken control of my life and chosen to treat my illness as I choose to I’ve become self-empowered. As much as I’ve become self-empowered, I struggle less. Do I “know damn well that something is up with me?” Sure I do. Am I completely free of struggle? Absolutely not. Do I believe I will “recover?” Yes, but I don’t know what that recovery will look like. The drugs have stripped me and poisoned me and weakened me. Will I ever be completely whole again? I just don’t know. What I do know is that as I come off my meds I feel more and more complete. I have some of my cognition back, I have hope, and I have some sense of greater purpose again. I believe I can once again contribute. Even when I was working I didn’t feel I was truly contributing, I felt hopeless and worn out and feeble on the drugs. I feel none of that now–at least not for long periods of times. I still slip into feeling of hopelessness from time to time–I think it’s just an old habit at this point.
Philip goes on to say some stuff that I think is absolutely right on for anyone who has mental health issues and especially for those people who have been weakened by drugs and poor nutrition. This is essential advice:
Two basic operating principles: No suicide. No giving up. Once you get those operating principles into your life, it gives you the ability get down to the most important matter of all, which is environment. You must have as much control of your total human environment as you can possibly manage. In the workplace. In school. At home. With friends. Out on the town. Anyone with bipolar disorder, depression and schizophrenia who’s had it for more than 15 minutes and is somewhat reflective on their state knows that there are certain things and situations that don’t work out well for them. Or which flat out screw them up. Like working too many hours. Or multi-tasking far too much on the computer. Or playing games with meds and dosages. Or whiffing a gram of cocaine. And so on.
One reservation–I guess I have to question what “playing games with meds and dosages” means. My doctor sure as heck had me playing games to the tune of completely coming unraveled as a result of playing just too much. Doctors play may be more dangerous than patients play. At least patients are responding to how they feel on the drugs. I now have a doctor who cooperates with me. That is all I need. I’m not playing at coming off of drugs. I’m doing it slowly and systematically and if I followed my doctors advise I would be psychotic by now. His recommendations were to come off hundreds of times more quickly than I am (hundreds of times is no exaggeration.) Who’s playing here–me or him? I’ve studied long and hard to find safe ways of coming off drugs. He is clueless. I need him though and he is a kind man who is choosing to trust me. I’m very grateful for him.
Ultimately where Philip and I differ is that I don’t believe we have to stay sick. I don’t believe that all “mental illness” is biological. Well, Philip, too says that we have to take responsibility:
You’ve got to adopt a no-excuses mindset. This means you’ve got to stop blaming the illness alone when things get dicey. You’ve got to dispense with the learned helplessness that the mental health system in this and other countries impose on patients. It’s fine to talk about depression as being bad and you need to try all the available treatments and so on, but there comes a point at which that whole approach takes far too much responsibility away from the patient for how they are progressing long-term (I am not talking short-term crisis situations here) and leaves the patient with little control of their own situation. This works out nicely for doctors and pharma companies, of course.
It is this responsibility that can ultimately heal us. I choose to believe that I do not have an inherently defective brain. I know that diet and nutrition is healing me. I have spoken either directly or indirectly to hundreds of people who have chosen to take their recovery into their own hands, using natural methods and thus have healed themselves. We suffer from nutritional deficits. I am damaged now, from the drugs, so I don’t know to what extent I will heal, but I know I feel better now then I have in 15 years. I trust that I will continue to feel better. I’ve been in touch with people who have been on drugs twice the amount of time I’ve been on them and they have withdrawn and recovered. People in the mainstream, and also not so mainstream, like Philip, refuse to look at anecdotal evidence which suggests that maybe the whole “mental illness” picture in modern medicine is just wrong. (to be fair to Philip I know he does question modern psychiatry to some extent–I don’t want to speak for him) But anecdotal evidence is not science, these people say. Unfortunately, there is no money to study the effects of diet and nutrition because there is no Big Pharma to back up diet and nutrition. The only reason there is no “science” is because there is no money. If anyone gives a shit they can find hundreds of anecdotal stories and once they start adding up you can’t just ignore them. I’ve gone as far as to trust them. It may take a leap of faith, but so does accepting you have a defective brain. And accepting you have a defective brain is disempowering. Believing you can heal yourself through natural means is empowering and not delusional as many would have you believe. I refer you back to Soteria House. That is one example of a study. Unfortunately I can’t direct you to a study on diet and nutrition. Sorry, but no one dished out the money for that study.
Philip again touches on a major truth with this comment:
My own feeling is that you’ve got to approach bipolar disorder as a personality disorder–or even as an environmental disorder–as opposed to a strictly biologically-based illness. You get to work on all the behavioral problems and cues and triggers then. I know that’s a heretical thought, but so be it. I happen to find it empowering. I’ll lay my money on individual humans and their wills any day.
As I take control of my life, I do have to look at my behaviors and negative thinking and bad habits. All things I can have power over through choice and will. I applaud Philip here! He’s right on. And it is empowering and in the end I don’t think how we approach our predicament is so terribly different. We are both attempting to take responsibility with different theories backing us up.
Thank you Philip for a brilliant post and a reason for me to write a post back. Excuse me if I in any way misrepresented you and please offer any clarification in the comments if I have.
Hi River, welcome back,
I was wondering if you would mind responding to the comments following yours in this post.
http://bipolarblast.blogspot.com/2007/03/my-manic-episodes-and-diagnosis-of.html
A couple of us wondered what you would have to say about chemical imbalance, physiology, and the EEG.
As far as you response to this post. I won’t argue with you– older patients do slow down. I have worked with enough to know it’s true as well.
But what are you getting at? Do you imagine that I’m not improving in any real sense coming off the meds? That meds don’t ever make people worse as I believe they have made me? Keener in the other thread comments on how her one and only “mania” was induced by Effexor withdrawal. The psych tried to slap her with a bipolar diagnosis and she refused, went back on the Effexor and got better. She is now doing a very slow taper.
What you say about patients leaving you–they may be for all the above reasons you mentioned, they may also be that they improve–that they don’t need treatment or that treatment made them suffer more. I’m in touch with so many people who leave psychiatry behind and improve. Have you read Kim’s story?
http://bipolarblast.blogspot.com/2007/03/kims-story-this-post-has-basically-been.html
I won’t pretend I’m having an easy time coming of meds, that I don’t have “internal” symptoms as you say. But that does not lead me to any conclusions as withdrawal has many symptoms that are not caused by the same thing that brought one to meds. Certainly that could happen without proper supports. But I’m doing many things to heal me. Did you read that my EEG reads normal now? How do you explain that?
I’m glad you’re here. I wish you had access to more stories than just my blog. You might want to take a look at some of the other stories of people who have recovered. Look at the website Successful Schizophrenia and another site Alternative Mental Health at:
http://www.successfulschizophrenia.org/#toc
http://www.alternativementalhealth.com/testimonials/default.htm
these are not stories of getting older they are stories of recovery.
We are all told when we enter the mental health system to not believe we can recover. We are often rudely coerced into accepting the ruling paradigm.
Thanks for your thoughts.
“I have not been insane or had impaired judgment (outside of trusting bad psychiatrists) in ten years. My last lapses of self-destructive and /or impulsive behavior was right about ten years ago.”
This has shades of what I was suggesting…that even if you were to go rapidly off all the meds in weeks (rather than years), I would bet that the suffering would be more internal than external. That the external manifestation would not be as loud/dynamic/threatening as when you were 20 years old. And that people would have a much harder time figuring out that you are suffering just by looking at you. The physical energy is less. (I’ll make an exception for those who work-out and take anabolic steroids!) Even a psychotic person usually has a sense of their physical limitations. The ones I see in the geriatric psychiatry units try to escape by gently pushing the locked doors and trying to walk out behind you. They do not try to sprint out or push you out of the way like the younger people do. Also, one time when I was physically examining an elderly woman, I thought I felt her tapping me on my shoulder, but actually she was hitting me and I didn’t realize it because it felt so soft.
I have seen older men in their mid 60’s come to me never being in therapy or on medications, complaining of having severe anger problems. They mostly have been traumatized when young and have been in many physical fights, domestic violence, or even trouble with the law since then. However I have NEVER had any one of them tell me that they get into more physical fights now when older, than when compared to when younger. Of course they may say they are “crankier” or yell more than before–but likely it is because they would rather be that way than to be a puncher and then get beaten up by younger people.
I’m the psychiatrist that wrote earlier but I might as well not be so “Anonymous” anymore.
I’m always interested in the experiences of people who quit seeing psychiatrists because I rarely get to hear what truly happened from their point of view (obviously). Many times, rather than being completely honest and risk offending me, it is easier to say that the drive is too far, or that things have become too “busy.” I think about the possibilities: was it me? (approach, insensitivity, ineffective meds, poor clarification of my role, etc.) or was it them? (denial of the truth, not really wanting to change, or was it just a bad fit like Angelina Jolie and Billy Bob Thornton? Regardless, I’m glad you can share your experience on this blog and look forward to your posts.
Your story with benzo’s is incredibly common. Anxiety gets worse. Or if benzo’s are prescribed for an ailment other than anxiety, anxiety start upon tolerance and withdrawal. I’m leaving benzo’s for the last thing I withdraw from. I’ve heard the horror stories. I know it can be awful. Congrats on a successful withdrawal. I know it took guts.
I wanted to comment on the benzo issue. I fought in pre-bipolar diagnosis with my pdoc because the one I had at the time basically left it up to me to dose myself on Xanax for some anxiety and panic attacks that I was experiencing after coming off of Zoloft. I was having withdrawal issues if I waited 24 hours between benzo. adoses, and I was basically using it only to sleep. I was on Xanax for a grand total of 6 weeks, and at my two-week follow up, I complained that my anxiety and panic seemed worse. So what did she do? She upped the dose to 2.5 mg. from 1 mg. I told her I was ultra-sensitive to medications, and I didn’t agree with the increase, but since she was the doctor, I listened to her. In the first 48 hours after upping my dose, I barely missed being in 2 car accidents. Not only that, the depression I had experienced was now much worse, and I now couldn’t do anything about my own health because I was doped up and depressed. At one point I started to titrate off the Xanax on my own because I knew how I was feeling was wrong, so I switched pdocs, and they took me off of the benzo. immediately.
Some pdocs do not listen to the concerns of patients, as was in my case. I am benzo-free, taking Seroquel, and guess what? I am free from anxiety and panic attacks. Maybe it’s the Seroquel, but I believe it’s because I couldn’t tolerate the benzo I was on.
I won’t tell you about my withdrawal story from Xanax, but it was a nightmare. I will never use benzos again in my life.
oh…I see where your question was coming from…sorry…like I said I am tired. Anyway, I answered and then some. In any case I recovered from the crazy stuff while I was still quite young.
Hello Anonymous,
I’m so pleased to see a psychiatrist on my site. I appreciate your comments and the interest you apparently have since you’ve left two comments.
When you ask if my improvement has come with age I have to answer carefully. Certainly, learning to take responsibility for ones actions and learning to curb impulsive behavior comes with age. Those improvements are most assuredly part of a maturation process we all go through. Not just people who struggle with mental health issues. Those improvements have been in place for me for many years. I continue to hone them.
In other ways I’ve decompensated in the last several years and in so much as I’ve decompensated I blame the drugs and I have yet to heal. I am ultra sensitive to stress. In my research among people who have been on meds for long periods there seems to often be a process of slowly falling apart. I see this most in the groups of people withdrawing from benzos. The benzos strip away coping skills and make one more susceptible to stress. I have been on a high dose of Xanax then Klonopin for about 15 years. Once tolerance is reached one goes into tolerance withdrawal. As long as you are no longer adding more of the drug, you are in essence in withdrawal between doses. Every night before my scheduled dose I have an anxiety attack and throughout the day in general for about 4 years now, I’ve been unable to tolerate working or multi-tasking and sometimes now even TV is too stimulating. I am a raw nerve. I don’t believe that this is who I am though. I have had contact with too many people who have found themselves in this condition and figured out it was the benzos. They withdraw and over time their response to stress improves dramatically. They get their life back.
I don’t know what I would do without all the communities of people I’m in contact with who have suffered the damage these drugs cause. I know I wouldn’t be able to do what I’m doing. I wouldn’t be able to see the light at the end of the tunnel.
So…of course I’ve improved with age in some ways. But in other ways age helps me not at all and in fact the older I get and stay on these poisons the worse I would become.
I am not well yet. I put up a good front. I am optimistic and have a healthy outlook, but I struggle everyday with an incredibly low stress tolerance. I am not recovered. Though I don’t believe what I am recovering from is mental illness. I suppose I have recovered from mental illness. I have not been insane or had impaired judgment (outside of trusting bad psychiatrists) in ten years. My last lapses of self-destructive and /or impulsive behavior was right about ten years ago.
I’ve gone off in directions you probably weren’t even talking about, it’s just that I don’t think I’ve improved with age…I think I’ve gone downhill. For reasons completely out of my control. At least until now. Now I choose to rid my body of toxins. I am back in control.
Recovery from simple impulsiveness is simple. We learn from consequences. What I am now trying to recover from is much more insidious.
But oh! I have recovered a good portion of my brain. I can think a bit now. Though I hope I can get back more of my cognition.
Anyway…I’m exhausted. I only got a couple of hours of sleep last night as I was worried about my brother who is dying. I know I’ve rambled. I hope I made some sense. Your question was not really clear to me, so I covered all sorts of turf.
Cheers.
People who get older usually have more wisdom, coping skills, and decreased potential for acting out–it’s way too much effort to be “manic,” score drugs, fight with your spouse (for a long time) or be impulsive. As a psychiatrist who sees hundreds of people, I see very few “manic” elderly people who get into trouble. They can’t run fast nor climb very high. Of course I am not saying that is entirely applicable to your situation, but could an element of your improvement be your age?
People who get older usually have more wisdom, coping skills, and decreased potential for acting out–it’s way too much effort to be “manic,” score drugs, fight with your spouse (for a long time) or be impulsive. As a psychiatrist who sees hundreds of people, I see very few “manic” elderly people who get into trouble. They can’t run fast nor climb very high. Of course I am not saying that is entirely applicable to your situation, but could an element of your improvement be your age?