I’ve had bipolar disorder for more than a decade – at least. Some might argue I’ve had signs of it since I was a child. That’s a very long time. That’s so long a time that it’s almost impossible for me to imagine myself without bipolar disorder. I suppose I can imagine it but it seems so farfetched that it’s barely worth the bother.
And for most of that time, the bipolar disorder has not been well-controlled. I’ve not only had bipolar, I’ve been manifesting those bipolar symptoms for most of my life. And while bipolar is not all that I am, it occurs to me that it absolutely is a part of who I am.
I’m a Writer
When I meet people and they ask, I say that “I’m a writer.” I’m not so much as person who writes for a living as much as I am a writer. It holds more of a place in my life than merely a job. It affects how I think, what I think and how I approach the world. Words are my life. Wordplay is my life. It’s just how my brain works.
I’m Bipolar
Much like I’m a writer, I’m also bipolar. Bipolar is my life, which is to say that bipolar symptoms are my life, which is to say that dealing with bipolar symptoms is my life. Literally, every day of my life is dictated by an attempt to control the disorder. It’s controlling from the time I wake up in the morning and take my medications to the time I go to bed at night right after I take some more medications. And in the middle of the day? It’s controlled by recognizing the illness symptoms and using all my coping techniques to deal with those symptoms. Bipolar affects how I think. Bipolar affects what I think. Bipolar affects how I approach the world. It’s just how my brain works.
Bipolar is Part of Who I Am
So it occurs to me that bipolar is a lot more than just an illness that I have. Bipolar disorder is a fundamental part of who I am. I know people hate hearing this. I know everyone wants to individuate themselves from the illness. I know everyone wants to politically correctly say that I have bipolar disorder and not I’m bipolar. I get it. I know.
But that doesn’t make it accurate. Now, don’t get me wrong, there’s a me outside of the illness. There’s lots of me outside of the illness. But there’s a whole lot of me trapped inside the illness too. And I don’t think there’s anything wrong with admitting that. I don’t think there’s anything wrong with admitting that an illness that has disordered my brain has fundamentally changed who I am. I don’t think there’s anything wrong with admitting that bipolar is not the same thing as a broken leg. I don’t think there’s anything wrong with admitting that something that has to affect everything from sleep schedules to thought patterns is a part of who I am.
I’m not saying that everyone experiences the illness that way. I think that many people are lucky and many people have well-controlled bipolar disorder and this allows them to live a more normal life. But many of us are not that lucky. Many of us really are affected all day every day but an unrelenting mental illness that attacks the fundamentals of who we are. Again, I’m not saying that all we are is bipolar, but I’m saying that a big chunk of who we are is bipolar.
Being Bipolar Sucks
I’m not saying this is a pleasant reality, it isn’t, but then bipolar disorder generally isn’t pleasant. What I’m saying is that it is a reality. And it’s okay to admit to that reality. It’s okay to say that bipolar is a fundamental part of who we are. It’s nothing to hide from. And maybe accepting it can bring us a little more peace. Because bipolar is really hard enough – we don’t need to be denying reality just because it’s more politically correct and makes other people feel more comfortable.
Thank you so much for writing this, I’ve felt like this for a long time but every time I read about mental illness it’s downplayed as “just like any illness” and “it’s not who you are” (person-first language, which I’m not a fan of). If something dictates every moment of my life then it is a huge part of who I am, it shouldn’t be that hard to admit it.
Thank you for having the strength to share such personal information. In the pas 6 months I am sharing more aobut being bipolar than I ever had…
Your honesty is inspiring. Like you, I suffer a mental disorder; mine is PTSD. My nephew, however, is BiPolar. Both conditions are rooted in emotion and the difficulty managing those emotions. I’ve recently gone public with my circumstances and agree whole heartedly that PTSD is part of “who” I am. I commend you for making the very tough effort to accept that in yourself regarding BiPolar. Although I cannot be defined merely by four little letters, PTSD is a facet of my personality that is here to stay and I’m stronger and healthier for embracing that. Thank you so much for the inspiration you’ve given. A community of people living with disorders does not constitute the looney bin, merely a group of odd birds who are very comfortable in their plumage. Best wishes and happy thoughts to all.
`”A community of people living with disorders does not constitute the looney bin…”
Quite so. Indeed, we are survivors of our disorders. We are not weak; we are strong because we are still here when others have fallen. :)
Well spoken, Harry. :-)
25 years in to being bipolar and I have to say I agree with you. I could pretty it up but why not say it how it is. I agree.
There are interesting posts that I appreciate, but this is not one of them. I’m still in the “I suffer from bipolar” camp, and I’ll tell you why. I don’t always cycle through episodes., and definitely not the same moods. And I do have moments that are quite normal, which I think is important to remember and acknowledge. Bipolar is something that places some vulnerabilities and limitations on me that I have to adapt to, and yes, the episodes did affect my life, but I am way more than that – and so is everyone here.
Hello Judy, I think it’s all right to be a person with Bipolar, rather than “I am Bipolar”. Often I ask myself whenever I did something undesirable or beyond my limits, is it bipolar or is it me? So how do I hold myself accountable to my doings? Whatever I do I am responsible for it, regardless I am Bipolar or I am a being with Bipolar disorder. Often times, the fine line that separates bipolar-doing or my doing has no significance when the outcome has already happened. I am who I am, and I have Bipolar disorder. It’s not easy and I’m learning to be brave everyday.
Dan Moore, CEO of Cyberonics responds to Herb Stein’s communication.
http://www.vnstherapy-herb.blogspot.com/2013/08/dan-moore-ceo-of-cyberonics-responds-to.html
Herb
http://www.vnstherapy-herb.blogspot.com
http://vnstherapy.wordpress.com/
My newest psychiatrist, just yesterday, commented on my looonnnnggggg psych history (going back 38 years) and the many different agencies I’ve been to and the many many different meds I’ve tried, consumed, or had been on.. over the many many many years. She asked and I told her. So, I can claim a long long, and never ending, tour of duty within the mental illness realm of being.
I am not being politically correct when I no longer define myself as “an illness”. Like you, I’ve likely had Bipolar for much of the last 38 years – just misdiagnosed for the majority of them and this is where I no longer define myself as “a illness”.
When the labeling on the bottle can change depending on the diagnostician.. you just no longer know WHICH label you are and you eventually just say “to hell with it, I’m just mentally ill”. That is where I am today, at near 47 years of age, I am just mentally ill.
I do not enjoy being defined as Bipolar. It sums me up in a tightly colored package that everyone else “sees” as something so far from reality of the illness. “oh, so you are Bipolar. Great!” in a snide tone.
I used to claim it and clutch it to my bosom, once properly diagnosed in 2006. I went a full year, claiming it and owning it and so relieved to finally – in my spirit and mind – know what was wrong and how it would be handled, though haphazardly. Folks tired of it and employers figured ways to ease me out without naming it, as reason.
I no longer tell another living soul… not even medical folks. It no longer stuns me to know that if the medical professional is aware of my “mental illness” that what I’ve come for to be seen, seems to end up in their mind as always “somatic”; even though I rarely, if ever, go to the “medical” for anything.
I often wonder why some people with any kind of mental illness suffer through way more stigma than others?
If the people around you make such a big deal of it (mental illness), then it becomes a big deal. A negative dynamic simply exist where the non-MI people gives you a hard time, and the MI sufferer tries to defend themselves.
I use to think that the more educated someone is, the more they are able to comprehend what the illness can do to a person, but this is not the case. Being educated does not isolate you from ignorance, and some of the cruelest people I’ve ever met actually fall in this camp – highly educated, but hopelessly ignorant and too arrogant to see it.
I’ve read some of your comments and am astounded by the number of diagnoses you are given. I think it (diagnosing) truly is sort of an art form. I would avoid the pdocs/therapists that say, “oh, you’ve also experience (fill in the blank)? Then you are also (insert label here).” I think you will be able to intuitively sense what you can fully relate to and have experienced, and can determine which to believe and which to discard. Of course you can’t really do this when you’re mired in symptoms and do not have the clarity to be insightful at that moment, but when the medication kicks in, you will. Sad that it seems (at least from what others have shared) some pdocs/therapists are inept, careless and more interested in their authority and not actually helping others.
“I use to think that the more educated someone is, the more they are able to comprehend what the illness can do to a person, but this is not the case. Being educated does not isolate you from ignorance, and some of the cruelest people I’ve ever met actually fall in this camp – highly educated, but hopelessly ignorant and too arrogant to see it.”
Try working WITHIN a MH agency and the level of ignorance and cruelty, as well as prejudice and discrimination… truly can be raised to an art form.
I have been an admin for nearly 10 years within 6 different MH & SA agencies. Years back, I thought that the employment world that I worked within would’ve been the MOST understanding of folks. I’ve actually endured my most discriminatory action FROM the MH pros, I worked alongside of and was totally knocked over by the realization that they really didn’t want to know that it is THAT close to them.
I simply do not tell employers. It has not been a positive experience from any of them, in the long run.
As far as the “different” diagnoses…. as I noted; I do not consider myself as anything BUT mentally ill. It’s something, for which all the MH pros that I’ve seen over 38 years, agree upon.
I AM mentally ill. With which illness? well, that changes from practitioner to practitioner..
I completely and soulfully believe Bipolar. It fits and it clicks within me, deep down. It’s the only one, the Bipolar I, that truly fits me… yet, I still, from time to time… get the Major Depressive or Dysthymia diagnosis… MH folks who spend no more than, on average, 2-3 months with me at best.
It’s what happens when you are of little to no financial and/or insurance means and even less MH resources in which to be provided… because you are one of little to no financial and/or insurance means.
When it becomes more of a definitive science, this psychiatry and mental health; will be when the throwing about of diagnoses on folks by many different diagnosticians will hopefully cease.
The label can change… but the mental illness remains.
Unfortunately; the changing of diagnoses, adding them or deleting them or tweaking them… based on the diagnostician’s experience and knowledge of the DSM solely…. can wreak havoc in one’s life. This is because it is on medical papers, disability forms if you file for any of it, and “others” understanding of what is going on.
One moment you are diagnosed with Bipolar… a year later, a different psychiatrist, and you get Schizoaffective… 6 months later, another psychiatrist, and you get Major Depressive…
you have psychotic hallucinations and most of the time you can figure, within a few seconds, that they are not truly there – though you STILL see and hear them
one psychiatrist says that they are “psychotic symptoms”…. another, down the road of time a bit, is reading your records and hearing you explain, then tells you that they are not psychotic symptoms but aren’t sure exactly what they are.. when you ask
WTF?
Well, people with bipolar can certainly present with depression/dysthymia. What troubles me is the way these therapist(s) are just carelessly pulling diagnoses out of their a**es without their thinking caps on. That is possibly more insane than the mental illness they say you are suffering from.
If a therapists does not ask you pertinent questions – about your energy levels, sleep, or even asks you any questions at all – RUN!!!
It’s true it isn’t an exact science, but there are some bad medical doctors too. A good therapist will know the nuances of an illness and recognize it when he/she sees it. Years back, a therapist actually called to tell me that I should come back in because she had noticed a change in my energy level and mood, and that she thought I was hypomanic (of course I didn’t believe her). Now that I am where I am, I think of her with a great deal of respect and admiration. She was objective, was able to recognize warning signs, and a big plus – genuinely concerned. A TRUE professional in my book.
Of course I didn’t have the insight or inclination to listen to her at the time (who would with hypomania), but at least I can now tell the good ones from the bad. And there are certainly some bad ones.
Anyway, so sad to hear of your troubles. It is a frustrating thing for sure.
Thanks for this post. I’ve been struggling a lot lately with whether I am actually anything more than bipolar, and where the rest of me got lost.
Love it! Yep, I’m *a* Bipolar and a Bipolar Survivor at that, which is something to be proud of ‘cos a lot of people can’t hack being this ill and go under where some of us have got through. So, I’m comfortable being called Bipolar and I get annoyed when the professionals assume they know what is best by insisting that I should not be attached to the label. Well, I *AM* attached to it because I’ll always have this illness, just as a paraplegic is *a paraplegic* and is defined by that because they are paraplegic and once you are that you will always be that. It’s even more so for us because the twists and turns of our personalities that accompany this illness, they are all in us – the quiet person and the noisy one, the frugal one and the spend-thrift, the introvert and the extrovert, etc. They are ALL us. They all *do* define us because they represent who we really are- devils and angels, all wrapped up in one.
Oh Natasha Tracy sometimes I swear you were in MY head when I read things like this.. I almost cried, thank you for your words.. =)
To what you’ve written today I would add FOR ME, my identity is not in my disease but first in Christ and THEN the disease. What I am finding out is that God is using my acceptance of being bipolar while knowing that HE is in control no matter how fast my head is spinning.. I am learning that He, along with my great doctor and medication, is going to help me to get through every minute of every day and I am using all of this time to be completely open and honest about it because I know that it is something that other believers need to hear. It IS possible to have total faith in Jesus AND have bipolar disorder!! We will make horrible mistakes, our minds will be bonkers and we will struggle just like others with this mind disease because it’s our “cross to bear” I guess.. It doesn’t change the fact that we’re still His and He still loves us in spite of our minds and there is hope in Him.
I look forward to the day I am no longer suffering from this as He has promised an eternity in heaven free of sickness and disease and I believe it. In the meantime, I have a responsibility to be on mission for Him, to let people like me know you CAN be both no matter what anyone else says.
While I don’t shout it out on rooftops, I’m OK with being bipolar and it being part of who I am. There are still many parts I like about it and some things that I don’t. I think I was saying, I am bipolar, long before there was a controversy. It’s just who I am.
Im a 55 yr old woman who iis bipolar, I have had in my twenties and im still not stable I live as a Women with Bipolar and 5 other disoders So nice to meet ya .
Hi Natasha ! I am so glad you wrote this out. I get so tired of people ( including the so-called professionals )saying that you are not your illness, that being Bipolar is no different than any physical ailment ! It is a part of who we are, and as you said, it aint going away ! So what do I tell these people when my illness tells me to take the alley when walking to the party store because I can’t deal with anyone ? How can they say that ( up to a point ) when I can’t go shopping, or drive a car, even though I did yesterday, and the traffic is no different than it was yesterday ? How do I explain to these unknowing people that some nights I get the pre – symptoms of a panic attack when I’m trying to get to sleep ? Bipolar does have its say, regardless of our medications, in what we do or don’t do every day. It is a part of us, and like so many people, I don’t want to take all of those meds at prescribed times – another way being Bipolar affects our actions. How about our worries and concerned if ( God forbid ! ) we think we forgot to take something that morning. I’ll spend the rest of the day in a state of paranoia, whether I took the meds, or not ! Thanks again
Robert…
For me, being Bipolar became a part of who I was when I was manic and then depressed right before my diagnosis. When my world was falling apart because of it. When I was suicidal and scared and didn’t know what was going on. But looking back, I can trace it back even further than that. It just happened to be the straw that broke the camel’s back and led to me getting some help, and a diagnosis.
That diagnosis changed my life. It came about a year and a half ago, and for the most part I’m stable, and life is better. But sometimes I still strongly resent having Bipolar Disorder, and having to take pills every day, and not feeling like I can be open about it. I know that supports the stigma, but I’m scared to “come out” to some people, so I just stay quiet.
I love your blog, though. I’m a new reader…I just found it this weekend, and I love it. Please keep up the good work!!
I really don’t think you are obligated to talk about it – except the people closest to you. Not everyone is equipped to be an activist.
I am one of the more fortunate ones where my biploar II is generally more easily controlled by medication. But bipolar is different than a broken leg. I totally agree. A broken leg can be set, fixed, and returned to normal function. Bipolar is simply who I am. If I do not think of myself as a bipolar, then I’m prone to feeling that I’m somehow “fixed” when it appears I’m relatively stable. It then it becomes so much easier to rationalize my thinking, which can clearly be a bit removed from reality.
I am bipolar. And that’s ok by me.
Natasha, thanks for this well-thought-out post. I tend to cringe when I hear people say, “She IS bipolar” vs. “she HAS bipolar,” but you’ve made me rethink this. My bipolar is certainly part of me, but I guess I’m one of the lucky ones whose illness is pretty well controlled. I can see where it might be different if it weren’t so well controlled. Thanks for talking about this so frankly. And for not being afraid to say how you feel. –Rachel
I was just pondering that exact point. Is bipolar part of who I am or a separate disease? Given the genetic basis of bipolar disorder, I guess then it’s part of who we are. How we interact with our environment, and how it works with us, will determine whether the bipolar is a problem or not. A child born with down syndrome has a genetic difference which is slowly becoming less and less relevant as we learn to help that child adapt. For example, having a different shaped palate may cause feeding problems, or it may not if we provide specialist help. Same with bipolar. Specialist help may mean that being bipolar won’t matter so much, but I can’t change our genetics.
Natasha,
If your prosthesis is not being periodically interrogated how would you know that it is functioning? Are you experiencing any side-effects? Why would you consider deactivating the device?
Have you considered contacting a neurologist caring for epilepsy patients to modulate the device?
I am not familiar with Canadian health care and medical coverage so I cannot address costs. Although, we both know by now that no one at the moment can really determine who will or will not respond to any given treatment. One VNS patient currently activated with whom I collaborate went on to try TMS. This individual finally found a therapy to which he responded. His depression is in remission. I also keep him posted with information. I learned that Medicare/Medicaid in several northeastern states in the U.S. was approving coverage for TMS. He took my information and advocated for himself and his health insurance company finally acquiesced. They are now paying for his maintenance treatments. He also addressed the fact that he paid a lot of money for the original series of treatments in 2012. His insurance company agreed to reimburse him.
I recognize this has nothing to do with Canada other than, and unfortunately, we have no way of knowing what will or will not work without trying.
Lastly, I had lunch with a young woman a couple of weeks ago who I have been collaborating with for well over 12 years. She often referred to herself as the human guinea pig as she volunteered for almost all trials offered by the NIMH here in the States. VNS did not prove efficacious for her so she explanted the device and got into a DBS study some 4 years ago. The long and short of her story for 4 years she unhappily dealt with the researchers without any favorable response. While advocating for herself she also learned one of the electrodes was geographically misplaced. Late December she met with the researches and once again laid another plan of several parameter changes she wanted to make. One in particular was agreed upon by both parties. The change was made.
When she met her sister in the waiting room she said, “Let’s go lunch. Why is it so bright in here?” Her sister looked at her in amazement.
And just like that the switch for her was turned on and the decades of depression abated.
I tell you these things not to say it will happen to anyone specific but to encourage hope and persistence to keep trying as you too might find your answer so long as you continue to try.
I am truly sorry to continue reading about your suffering. I do care as my rewards for my many years of advocacy and activism for wellness comes when meeting smiling and happy faces of those who have regained a semblance of a life and from reading your outstanding blogging also trying to share understanding and encouragement.
Herb
http://www.vnstherapy-herb.blogspot.com
http://vnstherapy.wordpress.com/
Hi Natasha,
Once again, I totally relate and agree with your point of view. It’s such a gift for me because there are very few who do get what an impact this disorder has on me. And you, more than anyone I have ever read or spoken to , have an incredible gift of conveying bipolar’s impact in print. I think quite a lot along the same lines as you do, but saying it or writing it is almost impossible for me.
I want you to know how much I appreciate all your blogs, I’m sure you help many people to understand Bipolar and it’s effects. You are a Godsend to me :)
Hi Natasha :
I’m sure you remember me. I’m the “Lucky One” who has achieved “episode free emotional stability”. Now, for almost 29 years straight. Perhaps, because of my consistency of Lithium (reduced from 900 mg to 300mg per day); and my constant use of “Positivity” when dealing with any potential emotional stress. My view point is knowing my past history of Bipolar, but living in the present as what I believe is as normal and any human being.
This is really important. Thank you. I agree with you save for one thing, and that is when I think of defining “a normal life.” Ten years ago I was estranged from my family because of my illness. I had spent all of my inheritance. I have a criminal record because I was psychotic and stealing from stores. My six times in lockdown were a nightmare. I had a laxative addiction that was killing me. I had no friends. You see, I was not taking the medication I needed to function. Now, I, too take six kinds of pills everyday. I fall into painful depressed states. I worry about hypomainia constantly. But, and it’s a big one, I can function now. I see a good psychiatrist. I can drive again. I can see a few friends again and attend some social functions again. I can clean my house again. So, is that “normal” ? Not really, but it is so much BETTER. Being better for right now is nice. I just had to start a new antipressant because that pain I feel in my brain and still feel. Even so, I feel hope….hope because I got some really good stuff back. My criminal acts were turned to “Innovent by reason of mental defect.” That’s better. In conclusion, I now want to live. That is a gift. thank you.
Hi Natasha,
It’s been awhile since I’ve last commented but this posting raised a question in my thoughts which I’d appreciate if you’d take a moment to answer.
Is your VNS Therapy still active? If so, have you tried making any modifications to your parameters? Lastly, have you considered TMS?
As always, I wish you wellness and all the good you’d wish for yourself.
Herb
http://www.vnstherapy-herb.blogspot.com
http://vnstherapy.wordpress.com/
Hi Herb,
Since you asked. Yes the VNS is still active but that’s because there’s no one around here who has a machine to turn it off. No, I haven’t really considered rTMS as 1. it’s unaffordable and 2. it’s unlikely to work as ECT didn’t work and rTMS is similar but not as effective.
– Natasha Tracy