We asked our twitter followers to submit questions about bipolar for our panel of women with the condition. This the first part of a two-part post in which we blog the answers. The panel consisted of Zedkat (@stfumisogynists), Mel (@wondermare), Athena (@AthenaGenevieve), and Jane (@jelizap). Please note that these answers are based on personal experience only and should not be taken in lieu of medical advice.
[Content note: discusses suicidal ideation and attempts. Briefly mentions childhood sexual abuse.]
What are the symptoms of bipolar? What do they feel like?
Zedkat: Bipolar is characterised by a pattern of elevated mood and depression. For me, ups feel like my brain is made of electricity and is permanently buzzing with ideas, like I’m moving at 150mph and the world is toooooooo slow. Depression feels like nothingness, just numbness, can’t get out of bed, can’t work, think about suicide a lot.
Mel: The classic symptoms are extreme mood swings that last for a while. In reality, the symptoms differ hugely from person to person – it really is an enormous spectrum. As to what they feel like, for me, they felt entirely normal until I had a breakdown aged 19.
Jane: For me, there are three major states: major depression, hypomania, and a medium-level depression that just hangs out there forever (similar to dysthymia, which one therapist described as the low-grade fever of the depression family), the third being where I spend the most time. In that mode, it is easy to assume that there isn’t anything “really” wrong; it’s like that lingering cold that isn’t bad enough to keep you from work but your brain gets sludgy and you are always tired, so it is hard to do good work, and you forget that “normal” doesn’t feel like this, and that, in fact there is a lot more feeling in the world – all the emotions are blunted – but I am still very functional.
Hypomania, on the other hand, can be dangerously good, right up until it isn’t. It’s like transforming into Speedy Gonzalez. I can get SO MUCH DONE in the first part of a hypomanic episode; I don’t need much sleep, and I can think really fast. What I can’t do is more deep thinking, like long-term problems or things that are emotional rather than analytical. When in hypomania, I can organize my entire life with heavily cross-referenced and color coded spreadsheets, but I cannot paint or draw anything worth keeping, both because my hands get really shaky and I don’t have the attention span to work through the slow, hard parts. I start talking very loudly and quickly. That’s the first 2-4 days. If the hypomanic episode doesn’t end on its own in that time, my brain goes faster and faster and thoughts get too fragmented to process, and I get irritated and angry really easily, and start to have lots of panic attacks (I think that’s co-morbid rather than implied by bp2). Hypomania doesn’t necessarily mean happy, either. At heart, for me it starts with thinking really, really fast, but it can be destructive as well as constructive.
No matter how long it takes to end, my hypomanic episodes always end with a horrible crash, pretty much proportional to how long I was up. This usually involves needing lots and lots of sleep plus staring at the wall because nothing matters except possibly whatever real or imagined mistakes happened in the previous week.
Racing thoughts are most often mentioned as a mania/hypomania symptom, but also happen during depression for me, most of the time.
Athena: For me the primary symptoms are my issues with mood swings, depression, mania, and insomnia. I also suffer from Post-Traumatic Stress Disorder and Generalized Anxiety Disorder so it can be difficult to separate which symptom is caused or triggered by which disorder. I experience rapid changes to my mood, which can mean multiple mood swings over the course of a few hours or even a few minutes, though with the help of medication this is largely under control. I also go through longer periods of struggle with depression and suicidal ideation, or mania with anxiety, paranoia, and energy levels so high it makes it difficult for me to function (unable to sleep or eat properly). These longer periods are considered to be episodes, and I experience both depressive and manic episodes, most often mixed episodes. These symptoms leave me feeling out of control of my mind and body, like I can’t trust myself, which in turn aggravates the symptoms I am already experiencing. Without episodes and mood swings fill me with a restless rage that leaves me feeling like crawling out of my own skin. With proper medication, regulation of sleep and diet, and support from family and friends these symptoms are dulled or muted. They become manageable, albeit stressful annoyances.
How old were you when you got diagnosed?
Mel: I wasn’t diagnosed until I was 27. I ignored the diagnosis and didn’t get a second one until I was 41. More recently, my psychiatrist has added a diagnosis of Borderline Personality Disorder.
Athena: My grandmother suspected in my childhood that something was different about me. She approached me about therapy around the age of 8 which I rejected. I began therapy after some traumatic experiences at the age of 11, and received no concrete diagnosis beyond PTSD. When I was 14 I began to suspect I was bipolar like my mother, but I did not receive an official diagnosis until the age of 17. My original diagnosis was Bipolar Disorder Type II but my current diagnosis is a milder form of bipolar called Cyclothymia, because I experience mixed episodes but am highly functional.
How long did it take to get diagnosed?
Jane: I had been symptomatic for at least 15 years, possibly 20. Once a psychiatrist I had been referred to started asking the right questions, we figured it out in about 6 weeks. (Of course, it took having a panic attack right in front of a therapist to get a name for symptoms I had been trying to tell doctors about for 10+ years, so maybe I just don’t talk to doctors well.)
Athena: 3 years from when I first thought I was bipolar (at age 14), though I still struggle with people (doctors)not believing it is the accurate diagnosis or that I even have a problem.
Zedkat: from my first depressive episode to diagnosis was 7 years, which is actually below the average of 10 years.
Mel: Nearly ten years.
Were you wrongly diagnosed first?
Athena:Yes. Between the age of 12 to 22 I saw multiple psychologists, psychiatrists, and doctors about my issues who all had differing opinions on what was wrong with me. Most believed there was nothing wrong with me, or that it was simply PTSD and mild depression. Even receiving proper diagnosis doctors questioned its validity as well as my own knowledge about my body. One doctor tried to diagnose me with Borderline Personality Disorder, though I do not meet enough of the necessary criteria and I have a family history of bipolar.
Zedkat: yes, I was diagnosed with unipolar depression first.
Mel: Yes, for a long time I was treated for unipolar depression. I almost wrote “normal depression” there, which is revealing.
Jane: Yes. My symptoms were entirely dismissed as “teenager under stress” until I was twenty, and then I moved through diagnoses of depressive episode, dysthymia, anxiety, dysthymia and anxiety, and dysthymia with anxiety and panic disorder. (I am currently diagnosed with bipolar 2 with a side of panic disorder.) The big difficulty in the bipolar 2 diagnoses was that a great deal of how a hypomanic episode is externally perceived is as being really productive and on top of things; extremely functional rather than dysfunctional. My bosses always loved it, and since most of the time when I wasn’t hypomanic I was at least in a minor depression, I assumed that hypomanic was the normal I was aspiring to.
What is the difference between bipolar and manic depression? Which term do you prefer?
Mel: They’re one and the same, the diagnosis was changed from manic depression to bipolar depression back in the 1970s I think. I like the term manic depression because it’s a fabulous song by Jimi Hendrix, and it seems to describe the mixed state far better than bipolar.
Jane: Manic depression as a term doesn’t apply very well to bipolar two, I think. I do not use it at all.
Zedkat: manic depression is the old name for bipolar. Personally I don’t have much of a preference either way, but bipolar takes into hypomania better, I think.
Athena: To my knowledge, manic depression was the old and outdated term for bipolar disorder, during a time when stigma surrounding mental illness was even higher. I seldom ever hear it any more, and if there is a difference beyond history I couldn’t tell you without looking it up. I prefer the term bipolar because manic depression has more negative stigma attached to it. I generally correct people if they use that term around me.
What are the names for mood states? What do you call them?
Zedkat: I think: depression, hypomania, mania, and mixed moods. I just call them ‘ups’ and ‘downs’.
Athena: I personally call them by whatever symptom I am experiencing the most. I say I’m manic if I am highly irritable, unable to sleep, and experiencing abnormally high energy mood swings (happy, angry, anxious, etc.). If I am experiencing a lot of paranoia or anxiety (which often go hand in hand for me)I say that I am going through a paranoid or anxiety phase.
Mel: Well, I’m not long into finally accepting my diagnosis, so I’m an “amateur”. I think the terms are, from low to high, severe depression, less severe depression, dysthymia (mixed moods), euthymia (what most people would consider balanced, or normal), hypomania (milder mania) and severe mania. What do I call my moods? Um, well, there’s Dread Belly, which often leads to Metal in a Microwave. On a good day I’m One Woman Disco. On a bad day I’m Car Crash Tea. And on a really bad day I don’t have any words because I’m just a big zero.
How long do your up/down periods last?
Jane: This varied wildly before I was properly medicated, though depressive/dysthymic periods usually lasted at least six months. Ups never go beyond two weeks. Now that we have found a good combination of medicine and other techniques to keep me on track (meditation, regular intense exercise, caffeine only in moderation) I usually can catch and shut down a hypomanic episode within 2 days, and while I still will have 2-3 month depressed periods, they are usually not as deep.
Athena: The shortest episode I can remembering experiencing was a few days as a teenager. The longest was an 8 month mixed episode. That was one of the most difficult time periods of my life. I had no idea when it would end or what I could do about it.
Mel: No hard and fast rule there, wish there was. I can go through the whole blessed rainbow in half a day or I can be awesome for two months and catatonic for five.
Zedkat: it really depends on a lot of factors and varies. My longest episode was a period of depression lasting 2 years. My longest period of hypo/mania was 6 weeks. When I was on anti-depressants without a mood stabiliser my moods would change hourly because the meds caused rapid cycling.
What were the first signs of bipolar for you? Was it you or other people who first noticed?
Athena: I struggled with depression and anxiety throughout my childhood, but the mood swings and general irritability tipped off my family, friends, and myself. Those began when I was a teenager, around the age of 14.
Zedkat: for me, the first sign was truly awful depression when I was 15. Nobody really recognised it for what it was at the time, everyone just thought it was the remnants of glandular fever. Then when I got to university it became apparent to everyone that I was having some pretty major difficulties.
Jane: I was glum and lethargic most the time, which I certainly noticed but didn’t at first know to label depression. Since I was also very functional, it took a long time for other people to notice anything was wrong.
Mel: I’ve always had big moods from as far back as I can remember, but when I was 13 I went through what I now recognise was my first hypomanic state – I discovered sex and sought it out from older boys. I was judged very harshly for it but not one person thought it was odd that a 13 year old girl would be so promiscuous. I pinballed from being being labelled a slag to “finding God”, and for two years I was an evangelical Christian, speaking in tongues, the works. Then I found amphetamines.
Everybody said I was weird, but I thought that was just me, and I quite enjoyed the label, to be honest. I’m from a pretty tough working class northern family, and my behaviour, happy or sad, was never discussed. It was just “Oh, Mel”. Some people would tell me I was hyper, or too happy. But I didn’t come from a place where feelings were discussed.
Even after a serious suicide attempt in 1989, the psychiatrist at the hospital where I was sent discharged me after two days and I swung into a manic state and forgot all about my appointments and ignored all the letters.
It wasn’t until I was 27, and smoking a lot of weed, that a flatmate said to me that I had too much energy and that my mood swings were scaring her. This preceded another dysphoric state, with a lot of self-harming, and it was then that my best friend took me to the doctor. And that’s a whole other story…
What treatments are available?
Zedkat: for most people medication is the mainstay treatment. But talking therapies are meant to be offered too, though they frequently aren’t – I’ve never been offered talking treatment for bipolar in the 3-4 years I’ve been involved with psych services.
Jane: Various medications – mood stabilizers, some anti-depressants, some tranquilizers and sleep aids. Also talk therapy can be useful to find mood management strategies to help stay more stable.
Athena: For me the best plan of attack was through multiple different kinds of treatment. Going to a therapist to talk about my issues was a major help in understanding myself and making peace with my issues. Seeing a psychiatrist for proper medication also drastically changed my life, and now allows me to function more or less like a ‘normal’ person. It can be difficult to find the right doctor(s) who understand what you are going through and can adequately diagnose and treat you. There were four full years between the first psychiatrist I had that diagnosed me, and the next one I found who believed me and got me on the right medication. But it’s worth it to keep trying, because ultimately the system is in place to help you out and there are people and resources out there for those struggling with mental illness.
One of the most important things I did however was changing my own life style (which was recommended to me by both therapists and psychiatrists). I regulate my sleep and eating so I have a daily routine that I try not to deviate from too much. Routine and structure that I impose helps me feel like I have control over my own life. When I am sleeping and eating properly and regularly I generally struggle less with my mood swings and anxiety, and episodes (when they occur) are more manageable. I make lists and plans when I begin to feel overwhelmed, and I always work towards goals so I feel like I am accomplishing something. Even if it is a minor goal like “Cook dinner at 6:15” it significantly affects how I feel and helps me continue to function at a normal level. I make sure to treat my body as well as I can, seldom drinking and never doing drugs (people with bipolar disorder are more susceptible to abusing and doing irreversible damage to themselves). I do my best to cut negative people and influences out of my life. I always schedule down time to allow myself to relax (with a book, go for a walk, watch a show, etc.). I also take vitamins that help mood, like Omega 3s (which for me are as vital to maintenance as medication) and vitamin D. Anything positive and healthy you can do to structure and maintain your life makes it easier to weather the storms when they happen. Even a few days without a proper schedule or regular sleep makes me far more susceptible to mood swings. Mental illness has to be treated just like a physical illness that requires routine and has rules to follow (such as diabetes).
How do you feel about meds?
Jane: If you try to take my meds away I will hurt you. Meds gave me my life back, once they were the right meds. Notably, the various medications I was given over the 15 years when my diagnosis was all variants of depression and/or anxiety mostly helped some, but more like band-aids or crutches. Some of the anti-depressants I was given ended up triggering my hypomania. When I was switched to Lamictal, which is specifically a mood stabilizer, the change started from the center of my brain out, specifically with how quickly the constant cacophony of racing thoughts just … shut down, and I could really hear myself think.
Zedkat: Ambivalent. On the one hand they keep me stable and for that I’m grateful, on the other they change me in ways I don’t like and make me not feel like myself…
Athena: I was reluctant and nervous for many years after a friend of mine tried to kill herself in junior high because she was on the wrong medication (it made her suicidal). But I was only holding myself back from an easier, healthier life. Bipolar disorder is not something that one can handle alone without proper treatment. It is a chemical imbalance that needs medication. I strongly urge anyone with bipolar disorder to take and stay on their medication. It has changed my life so much for the good, making the day to day stuff easier and the episodes more manageable.
Mel: I hate almost all the ones I’ve tried, but I’m not well enough to go without, so am putting up with the meds, and when one fails, we try another. I’m seeing my shrink in two weeks, and fingers crossed, this time it’s gonna be the wondercombo we’ve all been waiting for. But probably not, and it’ll be back on the Meds Merry-go-round. Happy, happy, joy, joy.
Can bipolar go into remission?
Zedkat: I think it can, yeah, my friend went into remission, or has only very minor ups and downs and was able to stop taking his meds, though he is really young still.
Athena: I suppose anything is possible, but I have always been under the impression that it is a lifelong disorder that requires continued treatment. I have never met anyone who had bipolar disorder, only people who have it.
Mel: I certainly think it can go quiet for a while. Mine was pretty well behaved through a lot of my thirties, it’s only into middle age that I’ve seen it resurface and had to start medicating again.
Jane: Not that I know of.
Does your sex drive go up and down with the ups and downs of your mood?
Athena: My sex drive goes down whenever I experience episodes because of my traumatic childhood experiences. I believe it is the norm for people with bipolar to experience elevated sex drives during mania.
Jane: Definitely; it is part of how I can track if I am heading off baseline to one side or another.
Do doctors demand to know about your sex life to see if you’re hypo/manic?
Jane: No, thank goodness, I’ve never had that one.
Athena: Sometimes they ask about it, but it isn’t usually the main topic of discussion.
Mel: When I was initially diagnosed, I did get asked about my sexual behaviour. But I’ve never been asked specifically about my sex life in order for them to make a diagnosis. They pretty much trust me to know my own moods. I did once have a male psychotherapist who seemed very keen to “dig up” my sexuality. Needless to say, I stopped seeing him.
Zedkat: yes! It can be quite embarrassing talking to a complete stranger about this stuff.
What should bystanders do if you’re behaving recklessly?
Athena: Talk to me, because sometimes I don’t realize I am in the middle of an episode, and sometimes I also experience denial because it can be hard to accept I am struggling yet again. Be patient, be supportive, encourage me to do things that are good for me (talk to a doctor, don’t stay up super late, etc.). Alert other people in my life that I am struggling. Support is the best thing a friend/family member can do.
Mel: If I don’t look like I’m going to harm myself or anyone else, get out of the way and let me enjoy it. If you’re worried about me, tell me and we’ll take it from there. My response may be frustrating, but if you love me, you’ll let me see it through. Hide the credit cards. [I actually don’t have any credit cards any more, as, like a lot of folks with bipolar, I ran up huge debts when I was high].
If my reckless behaviour looks like it might be leading to self-harm or suicide, get me to call the crisis number. If I don’t do that, take me to A&E. You have my permission, though I may hate you for doing it.
Zedkat: This is a hard question, mainly because if I’m in that state I’m probably not going to take kindly to being told it. If I’m really endangering myself, maybe call the GP or the crisis team, but if it’s just that I’m making you uncomfortable maybe just take a step back and let me ride it out…and prepare to pick up the pieces when I crash.
Jane: This is one of those places where hypo- vs regular mania gets really significant, because the degree of recklessness is just not the same, even when it is bad. In a really acute situation for me find someone else to drive. Assuming they know me well enough to know my issues, ask if I need to go somewhere quiet or if I need something to balance out whatever caffeine I may have been drinking (caffeine is both a trigger for me sometimes and a face-saving excuse if I am in a reasonably public setting where I really don’t want to discuss being BP2.)