I suppose my post today is about thinking critically about any medical treatment you choose, or do not choose. It is about deciding for yourself, maybe with or without someones help, what you are willing to try to achieve your mental health goals. Please do not decide not to follow your psychiatrists treatment plan simply because someone told you someone, somewhere, but they can't remember who or where, had a bad reaction to a particular treatment. Some people have bad reactions to aspirin, it doesn't mean everyone should stop taking, or never take aspirin.
I've noticed more than average antimedication, antitreatment, antipsychiatry comments on my posts lately. Generall,y my first reaction when I read these comments is to become annoyed and brush off the comments as antipsychiatry propaganda or unbalanced, undereducated opinion, or opinions not informed by facts.
I am aware that some of my reaction is a reflection of my own irritation that the treatments I try aren't working. Some of my reaction though is worry that someone, who may really need help for their mental illness, may read the comment and without thinking critically about the other side of the information, might decide they are too afraid to seek treatment, or try a particular treatment.
Today I began thinking that the people/person writing the comments may have had some very bad/awful experiences of there own in psychiatric treatments,; either with the treatments themselves, or the medications. I suppose if I were not completely confident that I was being treated in the best manner possible I might feel that way too. I hope, if people have had bad experiences with their treatment for mental illness, that they find the power inside themselves to find a therapist or psychiatrist that they feel they can trust. I know for me, when nothing seems to help, just having a psychiatrist I connect with on a very deep level helps me keep trying to get better.
I am sorry to see people are having/or have had such negative experiences with their doctors, or medications, or other aspects of psychiatric treatment. It is ironic that although I do not seem to get better, I feel absolutely no anger, or annoyance or fear that I am not receiving the best care possible. You would think after so many failed treatments I might be anti-medication, or anti-ECT, or anti-therapy. I am not. In fact I feel that being treated with so many things has helped me learn about all the treatments available to people. It has also taught me I am very blessed to have Dr. X as my therapist/psychiatrist: very, very blessed.
I read somewhere (Maybe in a book called "Bipolar Disorder: A guide For Patient's and Families", by Francis Mark Mondimore, M.D....great book by the way IMO) that people used to die from being manic. Given there were no mood stabilizer to slow them down they would sometimes just collapse from exhaustion. Given how little was available to help people with mental illnesses even 30 or 40 years ago, I find it remarkable how much has been, and is being developed to help people now.
Some of the comments lately (and in the past) focus on how dangerous the side effects of a particular medication or treatment can be. Part of my difficulty with some of these comments is that they often relay unbalanced, inaccurate, or highly subjective "knowledge". For example, one commenter wrote:
"Antipsychotics are very dangerous drugs and can even cause Parkinson's disease and Tardive Dyskinesia...Many psyche drugs can cause permanent damage to the brain and nervous system...ECT causes memory loss - BRAIN DAMAGE....It has been my experience that most people are depressed for a valid reason...It sometimes goes all the way back to childhood. For someone who is considering incurring brain damage to rid themselves of a problem, I would ask this: What unpleasant truth are you willing to damage yourself in order to hide?" (from, ECT Media Portrayals of Depression comment)
(Note: I am using this particular comment as an example because it covers a range of concerns similar to many of the comments other people, who suggest psychiatry/psychiatric treatments don't work, are dangerous etc., often make,)
My understanding of some of the above treatments considers some of what this commenter has suggested. Yes, I believe use of antipsychotics should be carefully considered, because there is a potential for side effects such as Tardive Dyskinesia, and other unwelcome/dangerous side effects. As a patient I need to decide if my illness warrants taking the chance with the side effects of the medications I try. I have decided that for me, the pain of my continued depression, is far worse than my fear of a side effect that I may, "potentially", (not "necessarily"), experience.
As for "ECT caus[ing] memory loss- brain damage": I understand that memory loss is a fear, and sometimes. or for some, a side effect of ECT. I have had ECT though, and while I did experience some memory loss around the time I was receiving the treatments, I don't believe I permanently lost any memory. I could be mistaken, given that even when I was experiencing short term memory loss while being treated with ECT, it was not me who was noticing it. It was my family members. I couldn't remember, what I couldn't remember(...ha, ha.) Regardless, my choice to try ECT was informed and in fact it was my idea to try it. People underestimate how severe depression can be, and how hard it can be to treat sometimes. My depression was severe enough, and treatment resistant enough for me to decide that even if I had memory loss from ECT, it was worth trying a treatment that was shown to be highly effective in treating depression. I was willing to lose a few memories for the hope of feeling better mentally.
Last, but not least, this commenter, and others with similar concerns, has suggested my depression continues because of some "hidden", or unresolved "truth" from childhood. The truth is I had parents who were at times imperfect...imagine! Like everyone mine childhood was not perfect. Maybe at times my childhood experiences were devastatingly awful, but at times, in fact I'd say most times I had it pretty good. My parents loved me and tried to be good parents. I do have difficulty accepting and understanding some of my experiences in childhood, but I have worked hard in therapy to learn to manage, understand and for the most part accept and forgive some of the bad things. While sometimes I wonder if I have some deep dark hidden secret in my brain somewhere...locked away so deep that I cannot remember...I feel pretty confident that is not the case.
I work hard in therapy with Dr. X and I worked hard in therapy with every therapist I saw. I am open and able to articulate my feelings and work through my experiences. While my depression often makes me ashamed of things, when I am in therapy I work hard to ensure any shame about any memories or experiences is challenged and dealt with. It is not likely that my brain has hidden something from me, some deep dark secret that I cannot face. I feel pretty confident I could face any truth in therapy, especially with Dr. X. because I know he accepts me anyway I am.
For me there is no deep dark past that is keeping me depressed. My depression is keeping me depressed That's it, and I will do all I can, use any and all weapons available to me in the psychiatric arsenal to fight that depression. Of course I will learn about any of the medicines and treatments before I agree to try them. For me though, rejecting theses treatments outright because I am afraid of what I don't know, or because I hear bad things about them, or because I hear/read about other's bad experiences, is not my way of doing things. I try to check out all sides of the story, learn as much as I can, read balanced information, look for scientific information and then make a decision based on as much fact, and as little conjecture as possible.
I know no science is perfect. Mistakes are made. Drug and treatment side effects can be devastating ands sometimes permanent. Companies selling things like medication, treatments, help etc. sometimes lie and cheat. Pharmaceutical companies' studies are sometimes falsified or sometimes only positive drug trial outcomes are published. There are good and bad therapists/psychiatrists, and people in general, out there. It is not easy knowing what will or will not help or harm you.
I believe all we can do is try to find a psychiatrist/therapist whose education, knowledge and experience we trust, take the responsibility to look into treatments offered to us and try to understand the pros and cons, and decide for ourselves what we are willing to try to help ourselves become healthier. For some, they will decide no treatment is the best treatment for them, for others they will willingly try anything their psychiatrist suggests. For me, I will try any treatment that my psychiatrist thinks might help, if I feel is more likely to help me than harm me and I can see that the potential for benefits outweighs the potential for unacceptable side effects. We (my pdoc and I) may not always make the right choices, but they are well thought out choices and the choices I am willing to live with.
Sing Yourself Into Breathing
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On a previous post, "Sheet Music" , I was extolling the value of singing
lessons. Harriet posted a comment about thinking about singing lessons to
help h...
15 years ago
13 comments:
Aqua, I would highly HIGHLY suggest that you get this piece published.
I can't say enough good things about it.
More on this soon when my brain's not as fried.
I wholeheartedly agree with this post.
I am a peer support person and I have personally seen some very sad outcomes of depressed people that were too afraid of seeking certain treatment options because of things they "heard" or "read".
When it's a matter of life or death, side effects are better than nothingness.
Even if a person sees it as choosing the lesser of two evils, it is a necessity in managing depression.
The comment you quote says things that are all true, strictly speaking. Only the emphasis is wrong. Treatments really are potentially harmful. They have to be used with skill and caution, and only when there is real benefit that outweighs the possible harm.
That logic applies equally to the treatment you are having. You are continuing with a treatment that doesn't work for you. It might work for other people, but it doesn't work for you. I don't know how to square that with all your well-argued paragraphs.
your blog is truly amazing, how you can articulate yourself so clearly and eloquently... really is a gift... my brain feels like *ugh* a fog, i have a desire to write about my experiences too.. alas... its just too hard at the moment... reading your words is a comfort for me, i cant even explain... i myself have tried a lot of remedies/treatments for my depression... from an allsorts of pharmacutical medications, rigorous exercise, yoga, meditation, dietry changes, no meat, no sugar, no caffeine, a football team of psyciatrists, counsellors, doctors, specialists, massage therapists, bowens therapists, pysiotherapists, osteopathy, essential oils, bach flower remedies, jaw reset thingy therapy, chinese medicine, accupunture, aura sprays, herbal teas, vitamins, a library of self help /spiritual books, positive thinking, congnitive therapy, art therapy, ... the list goes on... and the journey continues... till i find something that helps, i guess its all about finding what works for you, leaving behind what dosent... thank you for so much for sharing your journey with us aqua and i wish you the best of luck! xox
The comments you quoted are mine. I left them because I have read this blog and I see a young woman who does NOT deserve to be hurt in any way.
I also see this:
"The truth is I had parents who were at times imperfect...imagine! Like everyone mine childhood was not perfect. Maybe at times my childhood experiences were devastatingly awful, but at times, in fact I'd say most times I had it pretty good." -- I used to think the same thing.
At times your childhood experiences were devastatingly awful and I'm telling you, as a person who has been around the block more than a few times - a pill can't fix that. Drug use cannot erase the things we so desperately want to intellectualize and excuse. They just can't. If they could, I would be popping pills myself, even though that might be quite dangerous for my body. It would be easier than feeling things.
I wish you well, Aqua. I would never come to someone's blog with the intention of picking on them. You don't deserve to be picked on. Quite the contrary. You, and all of us, deserve information and respect.
http://www.alice-miller.com/articles_en.php?lang=en&nid=55&grp=11
http://www.alice-miller.com/articles_en.php?lang=en&nid=55&grp=11
Great statement: For me there is no deep dark past that is keeping me depressed. My depression is keeping me depressed.
speechless with respect and agreement.
amazing post. i wish people all over could see it, not just the readers of this blog.
"Generally my first reaction when I read these comments is to become annoyed and brush off the comments as antipsychiatry propoganda or unbalanced, undereducated opinion, or opinions not informed by facts"
That's generally my reaction as well. The way I see it, research and first hand experience gives a person a right to make a critical comment about anything. Topics like psychiatry and psychopharmacological interventions fit nicely.
"It is ironic that although I do not seem to get better, I feel absolutely no anger, or annoyance or fear that I am not receiving the best care possible. You would think after so many failed treatments I might be anti-medication, or anti-ECT, or anti-therapy. I am not. In fact I feel that being treated with so many things has helped me learn about all the treatments available to people. It has also taught me I am very blessed to have Dr. X as my therapist/psychiatrist: very, very blessed."
I totally agree with this point as well. I certainly get frustrated with the slow progress associated with titrating and exacting medication doses, and I certainly get frustrated with the therapy process. But the fact that I endure both of these processes is a testament to my ability to see beyond the acute situation at hand. This goes for you too, Aqua.
"I believe all we can do is try to find a psychiatrist/therapist whose education, knowledge and experience we trust, take the responsibility to look into treatments offered to us and try to understand the pros and cons, and decide for ourselves what we are willing to try to help ourselves become healthier. For some, they will decide no treatment is the best treatment for them, for others they will willingly try anything their psychiatrist suggests. For me, I will try any treatment that my psychiatrist thinks might help, if I feel is more likely to help me than harm me and I can see that the potential for benefits outweighs the potential for unacceptable side effects."
(nods a lot). This is part of the reason that I stick with my psychiatrist in spite of his schtick. I have confidence in how he is capable of helping me. I sometimes resent when people post on my own blog and suggest I find a new psychiatrist. What these commenters don't account for are all the instances when the shrink made the right decision and was able to effectively and successfully help me.
As I posted before, I really think you should publish this piece somewhere (even just excerpted). I bet Moods Magazine would take it.
http://www.moodsmag.com/
Thinking of ya
~Rach
Hi Aqua. I'm afraid I don't agree with what you've said here.
When you realise that we don't understand how ANY psychiatric meds work at all, then you can see the risk anyone takes with these meds.
You may not believe the above statement, but I have studied psychobiology and can assure you it is the case.
The comments you receive that are anti psychiatry reflect bad experiences people have had. It's important that people share their experiences.
I am not against meds or the practice of psychiatry in general. But it is VERY blunt and VERY crude. And I completely understand people struggling with it all and being critical of it based on the hell they have been through themselves.
While it's wonderful that you have a great relationship with Dr X this is certainly not the case for most people. "Find a psychiatrist ...etc" - well that's great if you are able but many people DO NOT have that much choice. I have met A LOT of psychiatric patients and have never yet met one who felt they had a remotely close relationship with their psychiatrist.
Your relationship with Dr X has nothing to do with psychiatry. It is to do with one man's character, ability to empathise, the personal chemistry between you etc.
I am always interested to read other people's experiences - whether good or bad. If people have bad experiences they SHOULD share them. We need all the knowledge we can get. And we need the (often) shabbiness of psychiatric services to be out in the open.
I'm sad to say I think you show a lack of respect for people's experience when you say their knowledge is unbalanced, inaccurate or highly subjective.
Psychiatric patients become their own "experts by experience". Dismissing their *evidence* by saying it's simply not true ... how can you say that when they are telling their OWN truth?
Also maybe you should credit other people with more intelligence. Ie I am not going to decide whether to try one med or another based on something I read on a blog about it, or even the experience of someone I know. Those who have a choice will not be basing their decisions on one or two pieces of anecdotal evidence. We do actually KNOW that everyone reacts differently to meds.
What you are really conveying is that psychiatry hasn't worked for you but you have at least benefitted from your relationship with Dr X. Just think how you would feel about the failure of your treatment WITHOUT the consolation of Dr X. I dare say you would feel somewhat differently about psychiatry - ie like many others who have suffered greatly from treatment(s) and never had a real connection at all with their psychiatrist(s).
Perhaps you think I am saying all this because I have suffered terribly at the hands of psychiatry - I can assure you it's not the case. I have no personal axe to grind on this.
Bare with me...the capitals aren't yelling they are meant to be bold to clarify a few points. I cannot figure out how to bold in the comments section:
I was very careful to say, "MY FIRST REACTION [generally this turn of phrase this portends that what follows is not necessarily true]...when I read these comments is to..." , then later..."I AM AWARE THAT SOME OF MY REACTION IS A REFLECTION OF MY OWN IRRITATION THAT TREATMENTS I TRY AREN"T WORKING"
I clarify when I say "...all we can do is.. take the responsibility to look into treatments offered to us and try to understand the pros and cons, and DECIDE FOR OURSELVES what we are willing to try to help ourselves become healthier. FOR SOME, THEY WILL DECIDE NO TREATMENT IS THE BEDST TREATMENT FOR THEM, FOR OTHERS THEY WILL WILLINGLY TRY ANYTHING THEIR PSYCHIATRIST SUGGESTS. For me..."
The post was not about how other's experiences or ideas are wrong, but about how my experience has been and how I worry that negative comments might make others afraid to try. I intentionally very carefully used the pronouns my/me/I when describing how I was impacted by other people's comments...I in no way meant to say that other's were wrong. Everyone is entitled to their own beliefs and ideas about what works and is right for themselves.
This post was about what is right for me. What I see as MY truth.
also...I have had many, many crappy mental health practitioner experiences with therapists/doctor's, psychiatrists, OT's, Social Workers etc...even then I believed I would find the right person to help me as long as I kept looking for the right person.
My negative experiences never made me think all psychiatryépsychology was crazy or crackpots. Rather, I thought all those people I saw may not have been a good fit for me, but someone will be.
Even if Dr. X stopped seeing me for whatever purpose I would not just see anyone. I would look for someone who fit me, on my terms...but that`s just me I am talking about.
I`m not just lucky I found Dr. X. I saw that I was not receiving the help I needed and tried to change that. I asked my dr to refer me to the clinic I met Dr. X in precisely because I was unhappy with my treatment at the time.
I guess I was lucky that he was taking on new patients, but I like to believe I was involved in the successful search for someone to help me too.
Aqua,
I happened upon your blog by way of a comment you posted to Dr. Shock’s blog which in turn led me to this recent posting of yours.
I am extremely impressed by your writing and superior cognitive understanding of the nature of chronic and recurrent depression referred to as MDD (Major Depressive Disorder). On the other hand I am truly saddened that you too have experienced the pain, agony and travesty this illness not only brings upon the patient but ones loved ones as well.
From my perspective of a spouse, support person and her healthcare advocate and activist of more than four decades your writings and understanding are very much on target and like you I have for decades endorsed patient education to make informed and un-coerced medical decisions while encouraging hope and persistence.
Obviously we both have the understanding that not all MDD patients have experienced parental abuse or that of others, situational or environmental mishaps etc, etc as potentiates for these often serious and devastating mood disorders; my spouse being one of those patients.
Having personally researched and blogged for well over a decade I am much aligned with your thoughts and that which I have similarly stated based upon my years of empirical observation and data recordings of my spouse’s medical history as well as world-wide collaborations with many professionals both in research and clinical practice. To which I also add I was formerly president and board member of a local chapter of DBSA as well as a facilitator of numerous support groups through the years. So I have learned much on my own as well as from first hand sharing of experiences from others.
Instead of laying blame as I read so often written in blogs and comments throughout the Internet and as was illustrated here the responsibility in my opinion lies with the patient and/or one’s support person(s) to be reasonably knowledgeable as to the undertaking of any treatment or therapy with the further understanding that very few treatments, if any, are without potential side-effects. I’m sure you also know as I do MDD is a potential killer with or without any kind of treatment.
Through the years I have also stated when a doctor hangs out his shingle to practice medicine so to speak, it doesn’t state whether the individual graduated first or last in his/her class and also in my opinion that there are doctors, good doctors and better doctors. The better doctor, in my opinion, is also not necessarily the one with the most pedigrees or accolades but the one who helps the patient to achieve some degree of wellness and quality of life. For some this might take years to achieve. On the other hand we have been fortunate to have caring attentive physicians attending to spouse’s needs throughout the years. In my spouse’s case history it only took some 36 years and a new therapy approach to most recently achieve almost 10 years of remission with extensive periods off all psychotropic medications and yet I acknowledge her therapy along with all the therapies tried in the past and even the newer therapies currently being researched are simply not panaceas.
Once again, thanks for your very rational thoughts and understanding of the challenges facing those who suffer MDD.
I wish you all the good you would wish for yourself.
Warmly,
Herb
VNSdepression.com
Well said and I agree with what you've written. I've faced failures with meds many times over. I've tried nearly every medication out there for my schizoaffective disorder. And saw 11 doctors before finding the one that works for me.
It's hard to have the patience to keep trying but it's often vital to our survival. I don't advise anyone with a severe mental illness to go off meds unless it is in transition to another drug.
I've tried the "natural" route and it didn't work for me. It was downright dangerous because I was trying to treat a severe and chronic chemical imbalance with vitamins!!
So as someone who has done both paths I can tell you that the drugs are best. The side effects aren't fun but neither is psychosis or suicidal attempts.
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