Up/Down Part I

I happened upon this documentary the other day and it really spoke to me. "Up/Down" focuses on bipolar disorder, public perception, and interviewing those with the disorder. I am coming to terms with having bipolar II and I thought it would be useful for me and interesting to answer the interview questions from the documentary.

So here's my interview!
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My name is Hannah, I'm 24, I'm a seasonal worker, doula, and stay-at-home pet mom, although I also identify as unemployed. I have bipolar disorder.

Could you give me a general explanation of how you felt before you were diagnosed?
I was very lonely and depressed. I self-identified and was labeled depressive and cranky by family and friends. I felt like I lacked natural social skills and often felt out of place or like I didn't belong. I experienced a lot of anxiety and it was labeled as a personality trait, like I was just a "mother hen" not really a health issue. So it felt like I was inherently flawed or broken. I came to believe that I would be alone and become the spinster, cat lady in the family because even though I wanted to be social and have friends it just didn't seem like I was capable.

And how long have you felt the symptoms of bipolar?
Looking back I can see irrational and depressed behavior way back to grade school. Since I have bipolar II my mania is subdued and a little harder to identify but I can see the jumps in my moods from down low up to "everything's all right," at least back to 4th grade. Having those moments where people look at me like "whoa, who are you?" because I had just been depressed and cranky and suddenly transformed into a Chatty Cathy. I remember being teased for being "too sensitive" when my moods would take a dive at the drop of a hat or after someone's off-hand comment, it didn't take much to set me off and I remember thinking "why does that bother me so much?" but being unable to pull myself out of a nosedive. It was embarrassing and frustrating and isolating and it started this vicious cycle of low self-esteem that kept getting lower and lower and making me more susceptible to negative thoughts so that by the time I hit my late-teens, early-twenties my lows were getting really, really low. So the suicidal thoughts started showing up around 15 or 16. Cutting, wrist banging, self-harm around 16. The suicidal ideation didn't get really bad until after college and the worst was 2011-2012. Then St. Patty's Day weekend 2012 I had written suicide notes and uh, thankfully let on what I was planning to my now husband who stopped me from leaving the house and eventually called the cops when I wouldn't stop trying to get away. I spent the night in a crisis center. We had some really rough nights between fall 2011 and through 2012.

Can you tell me when you were diagnosed and how it felt once you were diagnosed?
Well, I didn't realize it at the time but I was diagnosed with cyclothymia when I was almost 16. At the time I didn't realize that was a subthreshold of bipolar. I thought it just meant my depression came and went. So when I was diagnosed bipolar II in 2013 I was taken off guard. I was defensive. I think I rejected it because it had taken me so long to identify as someone with depression, changing that label from depression to bipolar was a big step. And even as someone who had struggled through depression, well what I identified as depression for many years, even with that history I retained prejudice against bipolar and other "more serious" mental illnesses. I felt like bipolar made me "crazier" than just having depression. So I was upset. I felt scared and weak. I thought it meant heavier medication and more side effects which I was not interested in. I thought, at least for a while, that it meant I couldn't be a mom. I've processed it more now and I realize it's nothing that makes me "crazier" or "less crazy," it's just a label for how my brain works.

Did you tell any of your friends, family members or partners? If so, how did they respond? If not, why not?
I didn't really. My husband was there when I got the diagnosis in 2013, so he knew. He said that he had already suspected it but didn't say anything for fear of freaking me out. So he was fine. He was sort of validated. My family knew about me and depression so they were familiar with that idea even if we didn't talk about it a lot, but I didn't update them on the bipolar diagnosis. I recently wrote in a letter, sort of off-hand, and mentioned it to my sister. And she hasn't really responded but I know she has claimed to be bipolar herself and mentioned, "something is not right, I think I'm bipolar," so I felt comfortable letting it slip to her. But I don't feel safe enough, or confident enough to talk with my family about it because of the rejection I anticipate or the minimizing which is hurtful and feels like a rejection. Other than that, I have one friend from high school and middle school that I can talk to. He has bipolar himself and um, there's nothing I can say that would phase him, so we can talk honestly. But I just don't have the space in other relationships right now for that discussion.

Could you give me a general explanation of what it is to be manic? Both the positive and negative sides.
Well in my case, it's "hypomanic," even though we refer to it as feeling "manic." Just easier to say. But for me it becomes difficult to sleep and I'll often start sleeping in after staying up til the wee hours of the morning. I often become really goal oriented and develop to-do lists of different projects and cleaning or sending people letters or cards. Sometimes I will write lengthy emails or reach out to people that I otherwise don't feel comfortable or confident enough to reach out to. Instead of being shy I become more social. I become infused with optimism when I'm usually a cynic or a pessimist. Money becomes an issue. I have to watch myself carefully so that I don't go on spending sprees. And before I was diagnosed in 2013, I didn't really see those spending sprees as mania so that caused some trouble with finances. Now I'm sensitive to it. But on the upside, I can become a social butterfly, cracking jokes, and being more productive. On the downside it usually messes up my schedule pretty bad. Screws up my sleep schedule, the husband gets annoyed because I am constantly go-go-go and hyper and often anxiety comes with it. And we're both rational people, but with that kind of anxiety I can't be reasoned with and it's frustrating for both of us when I'm just nonsensical.

If you could, try to give me a general explanation of what it's like to go through a depressive episode?
The depressive episodes are much more familiar to me. It is just amazing how quickly they slow my life down and sometimes completely stop it. Getting out of bed in the morning is a monumental task. Sometimes I'm not able to get out of bed until 1 or 2 or 3 in the afternoon. I don't care about anything. I won't take the dog out for a potty break, I won't want to get up to go to the bathroom, I'll just hold it until I'm forced to run to the bathroom myself. My face sort of numbs out. It's physically difficult to express emotions or smile or react to stimuli, like a funny movie won't break the surface. Often I lose my appetite but will also overeat bad foods. A sort of negative logic takes over and I lose my ability to thinking rationally, self-harm and suicide are frequent conclusions in my mind trying to cope with my thoughts or problems. Sometimes I get really angry and lash out or try to bang my wrist on a wall or counter. Other times I can't feel much of anything. Lately I've been able to cry more but I used to not be able to cry at all. Umm, pulling my hair out of frustration, losing motivation to shower or get dressed, forget about sex, no desire there. It's just a total hi-jacking of my life. It's very, very difficult to get perspective when I'm the hole of depression. I also get anxiety when I'm depressed and will become housebound. Often the hubby has to force me to go out and even a trip to the grocery store can get me freaked out.

Could you tell me about a pivotal moment involving the disorder? For example, a manic or depressive episode that changed your life.
There have been a few moments like that... I guess there are two big ones I think of, the first when I was in high school and had my first major episode of self-harming while on a band trip and the second when I was 22 or 23, before the St. Patty's Day detention. They were both depressive episodes and while I was caught up in the throes of depression there was still a small part of me that felt like a fly on the wall and I remember thinking, "wow, this is so bad, I didn't know it could get this dark." On the band trip I took some slant tweezers and scratched up my forearms, both of 'em, from wrist to elbow on the inner side and even though I was in a hotel room with three other girls and on this trip with all my other band peers I felt totally alone. The second episode I mentioned, I was engaged to my husband and in the middle of months and months of depression. He told me to drive downtown and meet him for lunch, which was a big effort for me. I remember picking at a scone while he had a regular lunch and we were talking and I was crying in public. I was ready to give up and he was so worried, and I remember putting my engagement ring on his pinkie finger and it fit perfectly. And I said, "Good to know. You can wear it when I'm gone." It was so horrible and so sad and he was so desperate to get me help and at the time we couldn't find a therapist or doctor that would help me without insurance because we weren't married and I wasn't working, so it was a really dark time where we felt pretty alone. That lunch date hurts more to remember than the cops coming into the apartment and hauling me out in cuffs. Putting that ring on his finger and seeing his reaction still haunts me. I guess he held it together other days, but that day I could see how tired and desperate we both were. So those times, I guess they were pivotal in showing me how serious my condition was and how dangerous it is to have uncontrolled, untreated depression.

Do you take any medications? And if so, what kinds? And if not, why not?
I don't take any medications right now. I have dabbled in them and spent years trying different medications and combinations, even supplements and natural remedies. But because I want to be a mother and because the side effects were as bad as the disease I don't take any right now.

Do you find any benefits with the medication?
Benefits from the medications for me were taking the edge off, kind of leveling out my emotions but it leveled me off below happy. Below okay. I was still sad, I was still immobilized for the most part. It helped curb the suicidal thoughts but it wasn't helping me get back on my feet. So it gave us a break from the worst of things, it helped save me when the depression was getting really bad. Short term, it was a lifesaver. Long term, they became a crutch.

Are there any downsides to the medication?
Oh lots of downsides. Saving your life is a big benefit but when you get past the crisis to everyday living the downsides suck. My family and my husband have told me that the drugs change me, change me to where I'm not "Hannah" anymore. It levels out my feelings to deadpan. Messes with my appetite, my weight, my sexual desires, and the physical withdrawal symptoms are horrible. Worst headaches of my life coming off of antidepressants. Messes with my gut and digestion, made me nauseated. Just horrible. Felt flu sick for weeks. The taper was excruciatingly slow trying to fend off the side effects.

Are you seeing a psychologist, psychiatrist, or counselor? And if so, do you find it helpful?
I have found it helpful but I'm not seeing anyone regularly right now. We had a bit of insurance drama and the anxiety from financial matters and insurance led me to curtail treatment which was scary at the time but turned out to be a good thing. Not picking over everything and worrying constantly and seeing multiple doctors every week sort of helped me calm down. So it's very helpful, but sometimes you can have too much of a good thing. Look at anything too closely for too long and you're bound to find something wrong and it got to the point where I needed to back off for a bit. Now we use a preventative care approach where I see my counselor when I need extra help and try to keep my moods in check to avoid needed serious treatment again.

How would you say you differ before and since you started treatment?
I am much more aware and in-tune to my emotions and my mood cycles. My husband and I have developed a whole new vocabulary related to mental health and really worked hard to cultivate open communication and support. Taking care of my mental and physical health has become a day-to-day focus instead of a yo-yo diet type of fad, it's constantly on my radar now. When I'm doing well the episodes become manageable and I'm able to get myself out of a depressive spiral or calm down during a mania and even if I do slip into one of those extremes I'm more accepting and bounce back better now. It's always a challenge but I have more tools now.

Have you experienced any discrimination or stigma related to the disorder? And if so, how?
Oh yeah. I have had my mental health impact my work and been unable to really talk about it. At one point I used FMLA leave to get through an especially hard time in 2009-2010, which was a huge validating move for me but made for some awkward social situations. I feel the stigma around my family a lot. My dad doesn't understand why I can't just "think my way out of it" and sometimes my mom or my siblings will tease me and act like my health issues are personality traits and it hurts. It hurts a lot not to feel accepted and understood by those closest to you. I have had some amazing support from friends that I didn't expect though, finding people I can talk openly with is a rare and beautiful thing.

Why do you think there is a stigma surrounding bipolar disorder or mental illness in general?
Definitely. I'm sure I have contributed to the stigma myself from time to time. When I was diagnosed I got defensive and didn't want to accept it because that stigma lives in me. I think it's a fear of the unknown, not just from the unknown nature of mental illness and the mysteries there but often people with mental illness are unpredictable and whether we mean to or not we rock the boat, and that's hard for people to be okay with or roll with. "Making a scene" is generally looked down upon and while we've gotten used to the slow people waddling around on crutches or Miley Cyrus types going for shock value, we still haven't gotten used to mental illness. I think with time and exposure, acceptance and understanding will come. Right now we're in a transitional phase.

Many males have refused to be interviewed for this project, why do you think that is?
I think it's related to the stigma of mental illness and the expectations and social roles put on men to be strong and stoic. Women have been labeled hysterical and weak for millennia, we're used to it.

Have you accepted the disorder as part of your life?
I am getting there. I think I still retain a vain hope that it will just disappear one day but at the same time I'm willing to adapt a healthier lifestyle so I can thrive no matter what, mental disease or otherwise.

What are your thoughts and hopes for the future?
Someday I hope to feel validated enough to speak openly about bipolar and depression and anxiety as part of my life. It's such a big part of every day for me that it's hard to withhold, it's nothing I ever wished to have as part of my identity but it is an important part of my life whether I like it or not. When someone asks, "What'd you do today?" I'd like to be able to respond honestly instead of carefully avoiding the details about managing my illness. I'd also like to be a mother and with that comes the hope that I can manage my disease and create a stable life not only for myself and my husband but our family as well.

What would you like the general public to know about bipolar disorder?
It's not as scary as you think. Just because we're more emotional and maybe not always reasonable with our feelings and reactions doesn't mean that we're throwaways. We're deeply feeling people with a lot to offer and while we may be sensitive we don't necessarily have to be handled with kid gloves. Sometimes we aren't in control and sometimes you may not have a clue what to do, but just being there and listening is a great gift to someone with this disorder. I think learning more about bipolar is a great opportunity to expand compassion and patience for fellow human beings, because that's all we are-human beings with the emotional volume turned up from time to time!

In your own words try to describe what it's like having bipolar.
Having bipolar is a paradox sometimes. It is an ingrained part of me yet at the same time an alien invader. All the symptoms and strife come from within me but it can feel like someone has hijacked my brain. It's like having an evil, Siamese twin living in your head and sometimes she gets full control of your body and mind no matter how hard you try to ward her off. As hard as it is, sometimes I can't help but be thankful for the rocky path it has directed me down. The insights and compassion I've experienced because of my disease wouldn't have come about if I hadn't been sick and I don't think my husband and I would be as close and as in-love and appreciative of each other had I not been afflicted. So as much as it's horrible, traumatizing, and scary it is also the bearer of blessings in a roundabout way.