Bipolar Treatment: If I'm Doing Everything Right, Why Am I Still Sick?
Once you’re on a magical medication cocktail, see doctors regularly, have done years of talk therapy, cognitive behavioral therapy (CBT), dialectical behavioral therapy (DBT), tried shock therapy (ECT), exercise, have social contacts, a support network, a support group, eat well, tried light therapy, dark therapy, and a series of awful tasting herbs and you find yourself still unwell; the question must be asked:
If I’m doing everything right, why am I still sick?
I’ve been in treatment for bipolar disorder for 12 years and have been asking myself that question for most of them.
What Doctors Tell Us
Here are a few of the things we hear in the doctor’s or therapist's office:
- Most bipolars respond to treatment
- Most bipolars lead happy, normal lives
- Electroconvulsive therapy is the “gold standard” of depression treatment and almost always works
What We Know
According to research and science, here is what we know:
- Technically, this is true. “Most” is more than half, and yes, it seems that more than half of bipolars respond to treatment. Between 10 and 25 percent of people (depending on who you ask) are “treatment resistant” and in spite of bipolar treatment will remain sick. No one knows why.
- This is highly debatable. I have yet to hear from a person with a severe mental illness who says, “Yup, I lead a normal, happy life”. The people I hear from are hugely impacted by their disorder and while some have spent part of their time being successfully treated, normal, and happy, these periods can be brief and often are the exception, not the rule. There may be people who lead “normal happy lives” but I wouldn’t say it’s “most”.
- ECT really is the gold standard of depression treatment and works better than any known antidepressant. However, to suggest it almost always works is ludicrous. In a chart review in 2005, only 65.8% of those with bipolar depression were shown to remit*. That’s a pretty generous use of the term “almost always”.
And Let's Talk About What Remit Means
In medical literature, doctors have to come up a quantifiable scale on which one can be considered depressed and one can consider having remitted - getting better. The bar for depression or bipolar remission is often a reduction in symptoms of 60%. That means people in “remission” still have up to 40% of their symptoms after treatment, and this is considered successful.
And, as a person who has experienced extreme depression and mood disorder I can say, 40% of my symptoms is still enough to ruin my whole day.
Let’s Reset Expectations
These numbers aren’t to depress you or make bipolar treatment seem hopeless. Even for me, with almost every treatment for bipolar disorder under my belt, and doctors giving up on me, it’s not hopeless. The idea is to grasp some reality here. There is nothing wrong with you for not getting better. You are, in fact, in great company. You did not fail. It’s not your fault. You are with so many of us that struggle every day.
Honestly, if cancer patients can accept the real number on their chance of survival, then so can we. We’re adults. We can handle the truth, slimy though it may be.
The truth is that most of us will have to fight and struggle for the rest of our lives. I think it matters that we know this. I think it matter that we accept this. I think this helps us realize that not getting better is not our fault. We can do everything right and still be sick. Doctors don’t understand this disease. Doctors are treating this disease with a spiky sledgehammer because it’s the best they can do right now.
Part of your life will probably be not getting better. But that’s OK. It’s not your fault. It simply represents a medical ignorance at this time. The good news is, even though we don’t understand why; part of your life will probably be getting better too. Remember that. Keep trying, keep fighting, keep auditioning medication cocktails, and just know that the failure is not yours, it is simply our lack of understanding.*Journal of Clinical Psychiatry, 2005 You can find Natasha Tracy on Facebook or GooglePlus or @Natasha_Tracy on Twitter or at the Bipolar Burble, her blog.
Tracy, N. (2010, July 1). Bipolar Treatment: If I'm Doing Everything Right, Why Am I Still Sick?, HealthyPlace. Retrieved on 2019, July 20 from https://www.healthyplace.com/blogs/breakingbipolar/2010/07/bipolar-treatment-if-im-doing-everything-right-why-am-i-still-sick
Author: Natasha Tracy
So, yeah. That kind of stuff bites, but there is always hope though. Just gotta find the right combo. My doc told me not to feel bad because I am so resistant to treatments. It's like it's one step forward and two steps back on some days. But, what choice do I have? I have to get better somehow. All I can say is to not give up. There are many of us right there struggling with you. We may not know each other on a personal level, but we are never truly alone in our daily struggles. Find hope and hold on to it with a vice-grip. It doesn't matter if it's finding hope in a dear friend's encouraging words, in family, a pet or a talent you have. Grab on to it and never let go.
1.Remember when things are not great,they'll pass eventually.
2.Keep eating as healthy as possible and exercise,upping the tempo to lose some weight.
3.Talk.keep talking it out,go to the depression group,see the therapist,talk to my mam,cousin,whoevers good to chat with.
4.Stop isolating myself,this is the hard one,as im hiding away.
5.To aim to get back working and feeling more productive,as at the moment dont feel that i am.
I don't believe a word anyone says anymore... antidepressants dont work, exercise don't work, eating good dont work, being a vegan dont work, get religious dont work, being spiritual dont work, the sunny weather dont work, having a loving girlfriend dont work.
Perhaps we need to be more true to ourselves and behave as our nature inclines us.. in that case I feel like ripping the head off every person see and chewing their flesh mmmm.... I'll give it a try
I took this path in desperation after decades of mental illness, mis-diagnoses and being foolish enough to believe that prescribed medication, psychiatry and recovery are compatible IN MY CASE.
My key breakthroughs were:-
Agressively confronting ALL the problems I had in my life which might contribute to poor mental health and REFUSING to use bipolar as an excuse. These included stopping alcohol, nicotine, narcotic and caffeine consumption. Addressing compulsive behaviours such as sex and spending and eliminating all toxic relationships including family members, or any which had a negative impact or view of mental illness and the challenges I face daily.
Agressively confronting ALL the trauma I had experienced in my life - with or without the help of a therapist. Lack of money is no excuse to keep the truth from yourself and frequently a counsellor is unable to confront your problems as you see them in any way that could be effective - because it pays them not to! Other people cannot dictate how we resolve our own problems. We are the masters of our own fate in all things. At best therapy can only guide someone toward a better understanding of a situation, but that and talk cannot cure bipolar or faciltate permanent closure on an issue.
Stopping and refusing to take any prescribed medication for my mental health against medical advice. The cold-turkey withdrawal was horrendous, but I have NEVER regretted doing so.
Researching and using vitamins and minerals to address chemical imbalances and fatigue. Of all these I find Magnesium and Vitamin B complex the most essential.
Realising that the cumulative impact of both low and high-level trauma may have brought about the onset of bipolar as well as genetic and environmental factors.
Recognising that my highs and lows matched specific emotional states and confronting the reality that I became increasingly manic when engaging with positive events, emotional challenges and activities and depressed when faced with negative events, emotional challenges and activities. Consequently I now try to reverse these matched states to maintain balance, so when I am high I do things that challenge negatively and when I am depressed I only engage with things that challenge positively.
Coming to the conclusion that IN MY CASE a significant component of my bipolarity had developed as a protection against things I could or could not engage with - rather than an organic mental illness. In fact I no longer think of bipolar as a mental illness at all, but as a physical one which I must treat like any other chronic physical injury or condition.
As a result my mood swings are radically reduced to a very manageable degree within a remarkably normal spectrum of variation - much more than I ever believed possible.
I have been bipolar since early childhood and I'm now 43. All I would say is that if you want to learn to live with this illness to the fullest - be relentlessly tough on yourself, kind to yourself whenever it is most required, be brutally honest, be realistic about the risk of death or danger, use the internet wisely and to your advantage and most important of all - do not listen to the opinions of others when your inner voice tells you a different story.
I'm so glad I could help.
That is certainly one perspective. In my personal research I have seen no scientific, peer-reviewed, published evidence that orthomolecular "medicine" works.
Regarding histamines specifically, I'm having a hard time coming up with research to support that theory too. It might be there though, I haven't spent a lot of time searching. And this, actually, says pretty much the opposite: http://www.ncbi.nlm.nih.gov/pubmed/20021346
Certainly anyone is welcome to try any treatment they like, but suggesting treatments with no scientific backing can be dangerous.
I've written a lot about people who want to get help for their loved ones. Here and elsewhere: http://www.healthyplace.com/blogs/breakingbipolar/2010/09/how-do-i-convince-my-friend-to-get-help-for-bipolar-disorder/
But what it comes down to is this - you can't save someone who doesn't want saving.
I'm sad to say that the only person that can make your ex better is herself. She has to do the therapy. She has to see the doctor. She has to follow the treatment plan. You can't make her do any of those things.
It sounds to me like you're doing everything possible to point her in the right direction. You're caring and helpful and you're doing the very best you can. But you can't fix this, only she can.
The only thing you can do is call the police if she becomes a danger to herself or others. Outside of that your hands are tied.
I'm sorry, but she has to want to get better.
Your ex sounds like her histamines might be too high. An elevated level of histamines is one common cause of serious depression. A histamine problem often runs in families. When my loved one became psychotic, a friend recommended a book by Linda Santini called "The Secrets to Recovery from Mental Illness." You can see it at Amazon.com. The point of her book is that people get biochemical imbalances, not chemical imbalances. Their biochemistry is all out of whack and needs to be restored with biochemicals (nutritional medicine). That's "orthomolecular" treatment so I used it on my family member and he recovered completely. Drugs only mask the symptoms of mental illnesses so people are almost never cured - they are just turned into lifelong customers while their symptoms are "managed."
I wrote a post in response to your comment. Please read it.
Exx. The Forever Lost
to do what I love - and of course whole family against me going off meds -but I need my memory back and to laugh again at everything.
I just need to no matter how scary it is - How would you suggest I do this-
I too, have thought of getting off of my meds many, many times...too many times to count. I take my gagging handful of pills every night pretending that I don't have bipolar disorder. I know my best friend, who has bipolar also, has overcome her disease now without meds, but her episodes have never been severe as mine.
Two summers ago, I suffered the most severe depression ever. I had started a job where I was delegated work that I was not suited for, and started having difficulty concentrating and was unable to work. I became so sick, that my psychiatrist eventually removed my medication regimen...but I didn't get better. I didn't leave the house for months, except by force, stopped eating, and barely left the bed. I didn't care if I talked to friends or family, or my boyfriend whom I lived with. I planned my suicide...but was too afraid that I'd end up paralyzed or something worse than living in my state of despair. My psychiatrist and family decided that ECT was the last resort. I had eight of the ten prescribed treatments, until I started going manic...my doctor had not restarted me on any of my meds.
Now I'm over $35,000 in debt from my being out of work and my shopping sprees...I was excited, being off my meds and not eating, I lost 60 pounds so I bought a surplus of clothes, jewelry, and gifts. I started drinking again and making poor decisions. Then I had to go back on antipsychotics and mood-stabilizers and I gained at least eighty pounds and became ashamed of my body again.
Van, I wish I could say that no meds is the answer. But from my personal experience and that of a master's prepared psychiatric nurse, I say "Be patient, see your therapist, and swallow." Your illness is just that, a disease, a disorder, but it does NOT define you...unless you let it. Only you can roll over every morning and be grateful...You are not a freak. And you can still be expressive on meds. God Bless You.
Amy, RN, MSN
I suffered rather nasty withdrawal symptoms, but I made it through them. I even managed to get myself stable for a while... almost six years with only minor episodes that quelled quickly. And then I sank into a depression and started hitting manic and this time... the cycling was so fast. It seems like there's never any break.
I'm not sure I really prefer any of them. I'd much rather be stable. But as a creative person, I do value the inspiration and the energy to do something with the inspiration that comes with a manic or hypomanic state. But there's also the rage and the anxiety and those things... I could do without those. And the impaired judgment... I could do without that.
But on the flip side there's the depression. And there's not anything good I can say about depression.
But I can say while I don't prefer any of them, what I really dread is hitting a mixed state. And I've hit those with more frequency lately.
I've considered returning to meds. I have. But I also looked back on those six years of medicine and realized that I have almost no memory of it. I know it happened. I know some of what happened and what we did because of stories people tell. And I remember a few things... not many. But mostly I know that I stopped writing almost completely during that time and I'm not sure I could bear that again.
I don't know if I can get better. And somehow it helps to know that not everyone does. It makes me feel like less of a freak.
Well, let me start with the important part - thanks for the compliments :)
Yeah, I've had people "jealous" of me as well. Believe me, there's nothing to be jealous about. And honestly, with your relationship and family, I'm jealous of you. It all decides on what side of the fence you're on. However, I understand how hard you must have worked to get that and keep it. And I don't underestimate that.
And here's the thing, you _are_ that strong. You might not feel that way, but evidence suggests otherwise :)
Thanks for the comment. I wish you the best of luck keeping your stability and accomplishments.
I hate, hate, hate that people tell me they wish they could be more stable, like me. First of all, they aren't in my head and don't know how I'm really feeling. I might seem stable...but I'm also pretty good at acting like I'm stable. Two people recently have said they feel jealous at times of my life.
I don't know. I worked for so long and so hard to get to this point. It's the fact that I'm married and have a child that triggers my friends' jealousy. They have no idea how hard it is to have bipolar disorder and try to have a family.
I'm not nearly as strong as people think.
Okay, I'm done rambling. My point was, great post. :)
Thanks so much for sharing. It sounds like you've taken a great turn for the better.
Thanks so much for sharing your story. It's an amazing story of perseverance. I agree; well all need to be proactive in our treatment.
The realization of Bi Polar Illness came to me that I may have an illness but it will not own me nor kill me..........the meds might, lol but I plan to live the best life I know how by learning and trying. Oh I forgot the two suicides I seriously attempted and should not be here.
This all started when I was 25 yrs old after I graduated college and I no longer played sports at that level................the sports from junior high through college kept the bipolar at bay. Bam it hit me after a few yrs of working 16 hrs a day/night starting a business with my husband; exhaustion caught up with me as did bipolar then came schizzo effective disorder..........voices oh how I thought I was definetly done, sick as you say but I did the therapy, upon therapy as you did and nothing, nothing was helping till I turned 30yrs old and this therapist came into my life. He opened me to a world inside me that allowed me to see what I was capable of no matter whether the meds were working at this point or I was high or low or hearing voices.....................1o yrs later I met this Doc that had the meds, the cocktails as everyone calls them and almost as I turn 50 he is always adjusting my meds as the therapist had taught me that I will go on many journeys in life; some wonderful, some really tough and some challenging in a good way but I have a room full of tools. I will never beat the illness but I can live with it just fine.
My husband; my best friend of 26 yrs left in March for his high school girlfriend............I caught him in Feb.; the affair was going on since last July. Yes clueless and I trusted my life with him. We couldn't have children because he was struck by lightening yrs ago but we had many neices, nephews and god children along with our dogs to feel so special. That is why I said he was my best friend, we hiked, gardened and owned a business together...................GONE......more than half my life!!!!! Yet I am doing very well beause of my support system and I used it.
I Pray for all of you......be proactive in your illness, your therapy and your life; it's yours.
I'm so sorry to hear what a hard time you're having. I don't live in what you live in but I can certainly identify _how_ you live.
Rapid-cycling is extremely hard to treat, which I'm sure you know. All I can tell you is that you're not alone. I'm out here, and I'm thinking of you.
I always like when I can make things clearer, and I agree, over the internet things can get muddled. If there's any way I'm not clear in the future, please let me know.
Thank you for your comments. I think they add a lot to your very clear and helpful post here. Recently I have come to realize that the Internet has a way of making communication much less clear, doubtless due to the inaccuracy of language. After making comments and reading your response, your article is much more clear for me. I hope others will find these comments useful as well. I appreciate you taking the time to converse with me on this.
I don't see where I'm making any comparisons. Sure, if you think comparing yourself to someone you perceive to be in a worse situation than you is helpful, you can feel free to do it.
I don't feel it has anything to do with inferiority. I'm talking about remission, what that means, and how likely it is that people will get and stay there. I'm talking about the fact that people often feel that they've failed because the treatments haven't worked. I don't know that remaining sick has anything to do with comparisons or inferiority.
And this is not "a complaint". What I'm talking about is a reality for many mentally ill people. Acknowledgment of a reality, even if it's unpleasant, is not the same thing as a complaint.
I do not mean to stop on you. I admire and respect your struggle because I have been in a similar place for a long time.
I'm not sure you understood any of my comment; granted, I did not write it well. I was trying to say that everyone compares themselves unfavorably to those that are doing better, or are more successful then them. In our case, it is comparing ourselves to those less sick then we are. What I am saying we should try is not a quack treatment. I feel we should try to compare ourselves to people that are doing WORSE once in a while. At my second job, I worked decorating the houses of multimillionaires in the Rocky Mountains. What I absolutely hated to hear is how they compared themselves to the billionaires, and came up lacking. "Oh, I'm not good enough for a handmade Bentley..." To which I held my tongue, because what I really wanted to say is "bitch, please".
I'm trying to say this article is not about our bipolar. It's about our inferiority complex. You have a right to complain, because it's been tough. In order to truly feel well, surround yourself with others that also see it's been tough.
P.S.: Again, if they fail to see it's been tough, you can threaten a lawsuit...
In all honesty, some proposed treatments just aren't right for some people and just because one quack out there suggests it, it doesn't make it worth trying. There's a never-ending series of half-baked theories about what "should" be done, and honestly, you have to draw the line somewhere. I've done some of these ridiculous things myself which shows desperation more than anything else. In my opinion, the more a treatment is scientifically proven the more I think it's reasonable to try.
And no, nobody is talking about a cure. At least, not from me. And yes, we all can have different kinds of lives with different levels of functioning.
(Sorry, I don't quite understand the last part of your comment.)
Well, it never does end, until you do. And really that's what it comes down to: you want to be here and play these reindeer games then it doesn't end. Good luck on your new meds. Drop by any time.
So yeah don't believe that for a second regardless of how true it is
Sorry on a cell phone =>
Well, in all honestly, I'm not a terribly big fan of hope. I'll elaborate on that some time later. But you're right, if you stick around long enough, there is generally a light to be found.
It's great that you've found something that works for you and yes, it sounds like your partner is amazing too.
I'm sorry you had such a bad experience with meds. You're in the few who suffer from permanent tardive diskenesia after treatment with antipsychotics it sounds like. Not that it matters that you are in the few. When it's you, you're the only one that matters, I know.
If you feel like you can manage and have the life you want without meds, I wish you well. I don't blame your lack of trust.
And just for the record, I winge sometimes. What can I say, sometimes I just gotta.
Thanks for the compliment. I do so enjoy the flattery.
I reasoned at the time that I had always been moody and that the meds made me moodier, so I'd just not use meds and live with being moody. Some days are better than others, and having a positive attitude makes a big difference, but accepting my condition instead of whinging about it has made the biggest difference. I don't have to be miserable. I can fight this thing. And so I do. And will do. Every day of my life.
It helps being certifiably insane, too. LOL
Love your writing. Thanks.