“We can spend so many years trying to convince people of how sick we are then, when we’re finally diagnosed, we’re left by the health care system to fend for ourselves as if our family and friends network was fully formed and operational, as though we have a working understanding of what the disease is doing to our minds and bodies, as though we should know and understand what the medications will do to our minds and bodies.”
Salted Lithium “A Perfect World Would Start With An Intervention”;
January 12, 2007
“…real mental illness is boring. Depressives are toxic and dull. Manic depressives are irritating. People with schizophrenia or autism are largely indecipherable.
Most of them are best treated not by charismatic psychoanalysts who carefully excavate the early, repressed trauma that has “led” to their illness, but by doctors who administer psychotropic drugs of one kind of another.”
Tim Lott, “Losing The Plot”; Guardian Unlimited, Dec. 12 2006
“I need a fucking intervention… I need people who know what they’re doing to stand up and hand me a plan. Because, really, I’ve spent twelve of nineteen years not knowing what it was I was supposed to do… and it’s gotten me exactly here.”
Salted Lithium, “Looking Forward To An Intervention Any Day Now”;
Feb. 12, 2008
“God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish the one from the other.”
The Serenity Prayer
The first year of our recovery from Manic Depression is pretty much like our first year of Sex Education. We’ve been shown all the diagrams, we can name some of the parts, but on Friday night we still think the best way not to make babies is to pull out and hope we don’t make a mess.
We walk out of the doctor’s office and straight back into the same world of disappointment, grief and guilt we were in earlier that day, but now with a little hope and a prescription. Two weeks later the disease has us by the groin again and we’re crushed. We thought we had a cure, but here we are just as fcuked as ever.
No one with this disease ever thinks life will get better. And for just cause, because without treatment it never will. The only way to get better is to find a doctor and follow their instructions. You have to fight back against this disease and recognize manic depression is something that actively works against you.
But that’s you getting into the office. That’s you accepting you have a problem and finding treatment.
So what happens when we finally get into recovery? I’ve been coming across a lot of posts recently on a lot of blogs written by people who have been in treatment for a few months or even less and who see no hope because the manics are still there and, worse, so are the depressions. They’re confused and the only solution some of them have is to find help by swallowing a lot of the wrong pills.
And that’s common. None of us know what’s supposed to happen in the first weeks and months of our recovery. None of us understand that because manic depression is a disease with identifiable effects and symptoms we can learn from the people who went before us.
Because before we even start our recovery, we’re mostly alone. But I believe we can all learn from each other, I think we all have something to teach. So this is some of the stuff I’ve learned… and if you have any, please leave some advice for others.
The quotations are from comments I’ve left on ‘Perfect Defect’ and ‘Exact Science’; taken from responses I’ve made to comments left here on Salted, or from posts I’ve published here, some of which can be found here and here.
1. “The disease is really just a tiny piece of something in your brain… little microscopic drips of chemicals that are just a little bit out of place or about four out of a trillion neurons sparking once instead of twice.”
The first thing is perspective. It took me a while but when I finally started to see manic depression as a disease, as a cancer, it became easier for me to fight against it because instead of blaming myself all the time, now I had a target.
2. “For too long we’ve deluded ourselves into believing manic depression was either something to be perversely proud of or something to be desperately ashamed of… but the mystique is a lie, it’s just a fcuking disease.”
The other thing about perspective is language. We have one of the most overly romanticized diseases anyone can be born with. Manic depression is not Depression and Depression is not a disease. Manic depression is, however, a disease with a higher death rate than Cancer.
The difference between real emotion and manic depression is the depressions and mania’s fed to us by the Disease have no natural cause. They just Are. They are real emotions in the same sense that a flashlight gives off real light, but it’s not the Sun. Manic depression is meaningless. Most of us either try to kill ourselves or manage to kill ourselves for absolutely no reason other than that’s what the disease is designed to accomplish.
People with manic depression don’t get depressed, we get suicidal. Half of all people with manic depression will try to kill ourselves at least once… but half will not. Manic depression, just like lung cancer, is not romantic. Treating the disease as something more than what it is only takes away from your recovery.
3. “Soon after we first get into recovery, when either nothing seems to happen or things just seem to get worse, we blame ourselves, we blame the medications, we blame the doctors and / or we blame the system. We’re not fixable, not treatable. Improvement in our first year of treatment is the same way I’d improve if you removed one of the four knives that have been pushed into my stomach. But it is improvement.”
What we don’t understand in the beginning is there are stages to our recovery that we all go through. We all wake up depressed two weeks after starting our recovery and ask why aren’t we better. We are all in danger during the first few months of our recovery of deciding everything we’ve done so far is useless.
In the beginning our treatments involve some guesswork. There are no arrows in our treatment, there are only blankets. We have to keep the doctor informed about side effects, and about recurrence of symptoms.
Because the study of the brain is only a decade removed from having to crack our skulls open to see what’s going on, our treatment and recovery depends to a large extent on our ability to accurately describe our symptoms to our doctor. So there’s a good chance you may end up changing medications a few times, this means withdrawal from one and the introduction of another.
Better diagnostic tools are not far away. Until then our recovery will not be smooth.
4. “With the medications we take there’s generally an overlap, so for a few weeks to a few months you’ll have all of the worst symptoms of the disease with all the crap side effects of the medications. Once the medications get to the proper level in your body, however, the side effects start to become less noticeable as your body gets used to them, while at the same time they start having an effect on the symptoms and the disease.”
Probably the scariest thing is the first major episode after we’ve started treatment. Most of us assign any lull in our behaviours immediately following starting our treatment to the medications. But the medications we are normally prescribed can take months to get to the proper levels in our body, then there’s usually another span of months before we can start to quantify any changes in our behaviour.
This is why doctors normally start high and work their way to lower doses. So for the first few months we usually get the worst of both worlds (side effects and symptoms).
This is why it’s so important to have a doctor monitor your progress. Unfortunately this is also when we’re most likely to panic, stop taking the medications and tell the doctor he’s full of shit… but most of the time they’re not.
5. “Manic Depression has no weight. There may be some depressing, horrible, tragic shit in your life story, but Manic Depression didn’t kill your dog, MD didn’t divorce your parents, MD didn’t kill your best friend in a drunk driving accident before you could apologize to him. Manic Depression did, however, prevent you from rationally dealing with those problems.”
One of the biggest secrets we keep from ourselves is that the depressions the disease throw at us actually end without us doing anything. We don’t come to terms with anything, we don’t work out our issues and we don’t end them by talking or crying. Untreated, or in the beginning of our treatment, the depressions handed to us by the disease come from nowhere and leave when they’re ready.
6. “[Manic] Depression is a thin coating, it’s a thin sheet of reflective ice concealing an ocean. It corrupts our ability to Reason, and without that ability we can’t defend ourselves against the thoughts inside our heads, so we find excuses we can live with. People with our disease are excellent at rationalizing unreasonable behaviour to fit situations we can’t understand.”
Other than the obvious, the one thing manic depression does to us that is more damaging than anything else is prevent us from rationally dealing with the day to day crap of being alive. We can’t study, we can’t maintain a relationship, we can’t work, we can’t save money… and all of those things, for as long as we’re untreated, add up to serious problems that we have to face when we’re in recovery.
So, one of the absolute worst things we face in our recovery is the fact we’re totally unprepared for life without manic depression. Student debt, car loans, having to face people who only knew you as the “dude without pants”. Responsibility is a heavy mother-fcuekr and we’re all delayed adolescents… I went untreated from 18-years old until I was thirty-three (ish), I missed all of the most important life lessons like “how to hold down a job” and “how to do laundry” and “the dishes should be cleaned before they evolve”.
Then there are the clinical depressions. Once the lid is on the manic depression it’s coming off all that crap we experienced before the disease popped up and during it’s reign of horrors. Sexual abuse, the death of people close to us, even the family pet… it’s entirely possible we haven’t mourned for anyone properly let alone dealt with abuse done to us.
And clinical depressions are hard to beat. It takes work and planning and interactions and tears and breaking things. They can be overcome, but clinical depressions don’t just appear and they just don’t disappear. And now, when we’re still vulnerable and raw, they will start popping up… but they can be talked away.
7. “Suicide fantasies are not you attempting suicide, they’re not even you attempting to work out the particulars of a future post-suicide funeral (“should she be crying, or wringing her hands?”), suicide fantasies are waking nightmares. They are the most recurring aspect of our disease, and the further we slide downwards the greater the frequency and the greater the risk for a very real attempt.
“People can live with Manic Depression the same way people can live with cancer, but without treatment you’re living at the whim of a tumour and it doesn’t really know you — you know, the inner softer you — so what the fcuk does it care? Medication is the only way to prevent the delusion that people will understand, through your death, the pain you feel. The medications are the only way to stop yourself from taking the knife and running it across your wrists.”
It’s important to understand that the fantasies will continue for a long time. I’m in my fourth year of recovery and I haven’t had a major episode in pretty much a year. But I’ve had a few small ones since then. I am not recovered. I will never be recovered. There are no cures on the horizon, but there are better treatments and diagnostic tools coming.
The purpose of your treatment is to put time between your episodes. All the medications really do is offer you some tools because most of your recovery is totally in your hands, so you have to use those increasingly longer moments of lucidity to prepare for the ever decreasing — but still dangerous — moments of mania and depression.
8. “Because we get hit so often by the same hard emotions over time our responses become almost automatic (”I can feel the wave coming on, I should just stay in bed and not move”). Then when we experience a common depression we completely surrender before we realize we only feel depressed because NBC has preempted The Office. If Pavlov wanted to observe conditioned behaviour he could have used Manic Depressives.
“It takes a certain amount of introspection to figure out the difference, but as you learn to distinguish between your ‘self’ and the disease you’ll learn that the common depressions far out number the disease-induced ones. It was a revelation to me when I figured out that most of the time I was depressed I could actually get over them rather easily…”
There is a common fallacy that because we’ve started our recovery we must rush to find out “who we truly are”, as though recovery was a book and we can flip to the last chapter. Finding out where the disease ends and we begin is a slow, tedious process. If after ten months of treatment we find that we really don’t like exposing ourselves to strangers, well that wasn’t us. The work of recovery is day-to-day, but the results are year by year.
There will, obviously, be changes in your behaviour. I was shocked the first time I remembered I hadn’t thought about suicide in over a month. But that came after the first year. We are Pavlov’s dog. We have lived with manic depression for so long we have allowed the disease to determine our behaviour. Even as we put time between our episodes we will continue acting and reacting to everyday life as though an episode were coming on.
9. “After you’ve taken the initiative to find help it’s you that has to take the initiative to get your family involved. Your family has watched the horrors of manic depression every time you cut yourself or were violent or they stood beside you while two nurses pumped your stomach… they have the experience through watching and trying to survive your insanity, but they don’t know how to react to your recovery other than to say ‘well, he ain’t crazy anymore’.”
By the time we get into treatment and start our recovery we’ve pretty much burnt every bridge we could find then gone back and scattered the ashes. How likely is it you’ll be hired back at the agency where you explained to everyone, in great detail, how you had the magical power to deflect asteroids? Or what’s the possibility that your Significant Other, the one with the beautiful brown eyes, will take you back after that incident on the roof of your neighbour’s house?
Manic depression forces us to pull away from the people who could be part of a support network, then we use the fact no one is around anymore as proof of our isolation. We stop returning the phone calls and when the phone stops ringing it’s because no one cares about us.
In my first year of recovery I went almost four months without stepping outside. I look back on my first day out in my parent’s garden as an incredible success. But when I came back in they both gave me shit for not raking the leaves.
You can basically react to your family in two ways… one, you can get pissed off at their indifference and unwillingness to learn about the disease and just develop a giant rage-on and eventually cut your ties. Or just accept the fact they’re just happy you’ve stopped molesting the dog.
Your family has lived through years of your bizarre and abusive behaviour. Every other week for years we’ve convinced them we’re dead and it’s their fault. Every time you raise your arm, they flinch. When you raise your voice they’re expecting a rambling, incoherent sermon. As hard as it might seem you have to cut them some slack.
10. “This disease is so insanely sinister it will actually convince you, its host, that it makes you more creative, or more deep, or more self-aware, or more capable than anyone else. Our disease will even make you proud to host it. After all, didn’t ninety percent of the geniuses who ever put pen to paper have Manic Depression? Aren’t we all part of some Grand Cabal of Suicidal Societal Architects? You have the disease that turned Kurt Cobain into a legend. You suffer from the affliction that put Ernest Hemingway’s brains on the ceiling. Fcuk, you’re basically one step away from actually being Sylvia Plath and Virginia Woolf.
“It’s incredible of what this disease can convince you. Not only will it take away any community capable of protecting you, it then convinces you this is your fault, then it makes you proud to have it and prohibits you from seeking treatment, then… and this is sick, then it kills you by convincing you everything it has done to you has been your fault.”
During the eighteen or so years I spent between diagnosis and finally starting my recovery there were moments when I tried to find help. Most of us start and stop and start and stop treatment, like a smoker trying to quit. I’d take my Lithium for a couple of weeks then stop. Or take it when I felt depressed, like it was Tylenol and I had a headache.
When I started college I stopped taking the Lithium because I found it too hard to think and write. Of course I was kicked out for not showing up and not writing enough. But I was convinced it was my fault because I was inadequate to the tasks. Sure I could recognize I had a disease, in fact I “dated” six or seven girls in my classes based mostly on their belief they could cure me. But I couldn’t connect the two big dots of Failure and Disease.
I knew nothing about manic depression other than it was the name of a Jimi Hendrix song and that it sounded cool. I was off on my own trying to stop a cancer from spreading across my lungs using nothing but time and hope. When I could breathe I thought I had scored a victory. When my lungs collapsed I thought it was a defeat.
The first book I read about manic depression was “An Unquiet Mind”. The epiphany I had was “this can be dealt with”. I tried the only thing I knew, I skipped work and walked into a drop-in clinic and got a referral to a psychiatrist. It didn’t work out, but I learned from my experience and from others along the way… hey, it’s like a circle has been completed. There you go…
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Gabe…you take my breath away sometimes.
Because of you, I AM able to tell myself it’s the disease and not me. I don’t think I can ever thank you enough.
I think the only thing I would add is that talking to people about this disease can help-the people around me, work wise, friend wise, they now all understand a lot more about bipolar than they ever did, and some understand their own relatives a bit better. It makes me a bit better to bridge that gap.
For now, I’m forwarding this to a friend in the midst of recent diagnosis and that hated period of new meds.
Happy New Brunswick Day friend. Love the photo as well.
You, my friend, are about 18 months too late in writing this. I really could have used this Jan 07.
Thankfully it is still plenty useful.
You should rest and play some GTA:IV
Thank you. May prove very helpful, very informative. Just need to start believing it, reading it makes it more real and hopefully will be a good start.
Thank you. Your post made me truly understand how much of what I’m feeling is normal for me at this stage.
(Aside to Thordora: thank you so much for the link. Truly.)
Thank you. That was a really interesting and helpful piece of writing. I think I may print it out and stick it up somewhere so I dont forget what you have written. X
Excellent as always. You never cease to offer practical words of wisdom for the MD community, and I for one thank you for it.
Thanks, I really wasn’t sure how this was going to turn out. Twice I got over 4000 words then erased everything and started again from scratch.
I went through most of Exact Science’s blog looking at his posts and comments, as well as Auralay’s Weblog, Fighting The Urge, Perfect Defect, Eccedentesiast and Coloured Mind just to get an idea of where they were in their recovery and what questions they seemed to be asking.
I had over 6000 words in notes and quotes to work from, so this was pretty much the largest project I’ve worked on since I started the book. And since I posted this I’ve thought of a bunch more questions that need answers…
I’m going to make a link to stick into the sidebar, or maybe make this into its own page, so there’ll be a place if anyone has any questions or answers they want to share. But if anyone thinks this information can help someone please don’t hesitate to hand out the link…
I hope my blog doesn’t make me sound like I’m lost =X
Hi auralay, no more than the rest of us… I guess I should make it clear I wasn’t searching the blogs looking for misery or personal stuff, I was just looking for questions people were asking and answers people could offer.
Oh.. well in that case, carry on 🙂
I’m glad you’re able to get some substance from it- it kind of makes me feel like I’m making some sort of progress if someone else is able to look at what I’m doing and take something from it.
I hope you’re doing well 🙂
This was so good.
Thanks Sara, that means a lot.
I’m going pretty well today, auralay, thanks for asking.
Another illuminating post Gabriel. You do a lot for public education and awareness.
Hi Zoom!… thanks for the CBC thing, I think they picked someone else but it was exciting there for a moment. “Illuminating, I like that. If you ever think this would help someone please feel free to pass it on…
I have a question-what to do when you’ve completely fucked up your relationship? Cause I’m about 2 seconds from a divorce I don’t want, and I pulled a dumb ass suicide attempt to complete the picture.
Somedays it just feels like 2 steps forward, 4000 back with me.
I just got home Thor, I’ll send you an email within the next hour.
I read this a few days ago, but I’ve been afraid to say anything because I’m not diagnosed, but this still lifted a world of doubt off my gut. This makes me less anxious to walk into the psych’s office for the first time. It makes me less terrified to look my parents in the face and tell them I need help. I’ll probably be referring to this page a lot in the upcoming months…year(s).
Thanks. If I could be where you are, I’d give you a crushing hug with my big ol’ manly arms.
Thanks Esther… I’m totally blown away.
I’m not sure yet if I’m going to put a link to this post in my sidebar, or turn this post into its own page, but it’ll be easy to find.
Just an update on Thordora, I think things have calmed down a little and we are emailing each other.
I found your blog through a fellow Ottawa blogger – Zoom. I’ve been reading for about 4 months but haven’t commented. This post, however, is so beyond amazing that I had to let you know. I hear many of my own experiences in this post. Especially your commentary on #9, 2, 6 and 7. Such a great post. Thanks for writing it.
As everyone else has already pointed out, this was an amazing post and describes alot of what I’ve been thinking and feeling, in particular #7. That got me.
Take care x
Best. Lede. Ever
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I’m in the process of having one or two knives of five removed from my stomach, so I really appreciate #3 above. I’ve had bipolar for at least 12 years, and was only diagnosed a few months ago. I am all turned around, needless to say… I just started my own blog to try to make sense of things, and I look forward to reading everything you’ve ever written.
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Thanks man this post really helped. Some of the things you stated made me keep my head up high and to not end my life but still have hope. I am just so impatient with this disease; because i believe it will go away but the waiting is keeping me closer to grabbing that kitchen knife in the dishwasher. But i really liked this post though, even though i’m idle, thoughtless, and really socially unstable i will still keep keeping on no matter how uncomfortable life is..
Thank you for sharing some great tips. It seems like as I get older my symptoms get worse.
Hello istbdw, and thanks for the comment. I’m glad you found some use in this… sometimes, as I get older, I realize how totally unprepared I am for my life. Between my family and the disease I think the only only thing that keeps me going is the continuing treatment.
The only treatment I’ve had so far was a stay in a psych ward and too many medications and I’m still bursting out and can’t sleep or eat. I feel like my life is a pardon my French but a never ending fcukshow. My parents took my car keys, I can no longer stAy at my apartment. They R just afraid but I’m Afraid too. Any helpful hints am I on the right Meds. I’m I just plain insane ?
Hi again istbdw. Getting into a ward can be the best thing for us, it gives us access to doctors inside, and then treatment as out-patients afterwards. It pretty much guarantees you’ll have a doctor involved in your treatment.
The problem with treating manic depression, is we expect it to work right away, as though we were treating an infection and all we needed was a week long regimen of antibiotics. But bipolar is more like a virus, it’s requires a long term treatment with a lot of up and downs.
I have no idea if you’re insane, or a danger to yourself or others, but I can tell you that if it is bipolar / manic depression, there are ways to recover. They take time, but they do work.
And I definitely cannot tell you which pills to take, or which method to use in your recovery, but I’ll give you my current list:
Whatever medications you decide on, you MUST have them monitored by a doctor. But it’s you who has to tell the doctor how you feel while you’re on them, which means you have to keep track of how you feel day-to-day.
Thanks its a short list of meds… I’m on 5 for Bp and 3 for other various problems…. Maybe we should all just shots of meds instead of taking a pill everyday…. I think that would be nice.
Gabriel, I have been on the road to hell with my beautiful daughter. She is in the first year of recovery, who knows where this road will lead. I live in fear for her.
Hi..Sorry about my english..it’s not my ‘ 1st language’.. I am so glad I read your article.. I am not diagnosed, but I have all the symptoms..and I am very sure I am one of you..