TW: verbal, emotional, & sexual abuse; transphobia; description of manic symptoms

I should not have allowed Ron to drive home at 2am two weeks ago. I should have talked zir into going to the hospital.

I just … I’ve read about how traumatic mental health hospitalization can be. I volunteered on a locked adult psych ward – and I was terrified they’d figure out I should be there as a patient and prevent me from leaving. Ron talked about how horrible being hospitalized was, I’m not sure if that was before or since the last time I wrote about zir. On a personal level I’m generally inclined against seeking medical help – especially going to the hospital – unless absolutely necessary, like life or death … But I shouldn’t have fallen back on that. I risked Ron’s life, allowed zir to go untreated for another week – during which zir symptoms got worse and zir behavior became a risk to zirself and others – and allowed it to get to the point where ze was involuntarily committed (by someone else).

Worse, I subjected myself to nearly 48 hours of being ranted at, manipulated, and abused. I feel like it’s set me back at least a year, maybe two, in terms of my own mental health. I’ve spent the past week on an emotional roller coaster, replaying the most painful moments over again in my mind, and debating whether I have any right to describe someone else’s symptoms on my blog. Well, those symptoms interacted with my mental health issues to make it so there are times when I feel dead inside. I’m having self-harm thoughts and urges again. That’s mine to write about!

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Hypomanic and Depressed at the Same Time

I read an article today and now my world makes so much more sense. In a Depression Bipolar Support Alliance (DBSA) “Ask the Doc” article, Dr. Mark Bauer, MD states that:

“[T]he most common mood state in bipolar disorder is a mixture of hypomanic/manic and depressed symptoms. In fact, the classic picture of bipolar disorder having a course alternating between the poles of high and low moods is an over-simplification.”

He goes on to explain mania and hypomania more clearly, basically describing them as hyperactivation – feeling “sped up” and driven. This can feel good (e.g. grandiosity), bad (e.g. irritability), and everywhere in between. In other words, mood and activation level are two different things.

Ergo, we can think of bipolar disorder as

“a condition of recurring depressive periods punctuated by periods of hyperactivation – and sometimes these periods of hyperactivation alternate with slowed down, depressed periods, but at other times they overlap.”

That. Is. My. Life. It’s very rare for me to experience a period of time with no depressive symptoms; at best my symptoms become few and mild enough that I don’t meet the criteria for clinical depression for a couple days to a few weeks. But periods of hyperactivation… just look through my blog and you’ll see my posts about “I’m going to do this new thing that will change the world,” staying up all night composing, “now I’m getting better and I’m mad at Fox all the time,” and most recently “Let’s Play Skyrim!”

I usually feel better during my periods of hyperactivation because 1) I have energy to do things and 2) I’m hyper-focused on something that’s meaningful to me, at least while the hyperactivation lasts. Sometimes I don’t feel so good because I want to Do All The Things!!! but I can’t focus on one thing to do, so my mind is a jumbled mess. I’ve also tried to be a part of too many different groups at once, which invariably results in me feeling overwhelmed, backing out, feeling guilty, and my depression symptoms becoming more severe. As far as I can tell, all of my periods of hyperactivation have occurred at times when I also met the criteria for mild depression. (Possibly also moderate depression.) In other words, I’ve never had a discrete hypomanic or manic episode.

I try not to put too much importance on labels; what’s really important is that the needs of the person with a mental health issue are being met. But having a label creates a container for my experience; I can understand it and talk to other people about it and know I’m not the only one who’s had that experience. Finding labels that accurately describe my experiences helps me feel safe. I obviously can’t diagnose myself, but the label “bipolar disorder” seems to become more accurate the more I learn about the experiences it’s intended to describe.

I know I’ve been “depressed” lately because I’ve been feeling sad and/or grumpy, isolating, having trouble eating full meals, apologizing for my existence, and thinking “I want to die” when I’m tired. I feel like it’s only a matter of time before my world starts unraveling (again): I worry about Fox’s safety, our rats’ health, my own health, the house burning down, etc. Calling these experiences “depression” helps me separate a bit from them, accept them, and engage in self-care.

Moody Monday: Feedback

The Mood Network is a research study that enables people with mood disorders and our family members to work with doctors and researchers to find better treatments – not only by providing data, but by sharing our insights. I first blogged about it 3 weeks ago, calling it an opportunity for activism, critiquing its implementation, and encouraging readers to “light a fire under the researchers’ butts.”

Well, some pretty awesome things have happened since then. I was contacted the next day by the head of the Mood Network: Dr. Andrew A. Nierenberg, MD. He thanked me for my feedback and assured me that he would bring my suggestions to the rest of the team. I’ll admit, I was a bit skeptical – but also pleased to have gotten his attention.

Then, on June 12th, Dr. Nierenberg commented on my first Moody Monday post:

Thanks so much for your interest and thoughtful comments about MoodNetwork.org. We are taking all of your feedback seriously and are in the process of implementing some of your suggestions. MoodNetwork will include surveys to do exactly what you suggest, i.e. to find out what is important to experts by experience. We will also have opportunities soon to not only to ask you and others about research priorities, but also will ask you about your experience in receiving care. We are also working on improving the forums and blogs – and yes, it does need a lot of love. Please be patient with us and thanks for joining.

It means a lot to me that the head of the Mood Network made a statement like that on a public site; it suggests to me that he and his team are serious about making those changes. I especially appreciate the specificity regarding which suggestions they intend to implement. (The new surveys and opportunities haven’t appeared yet.)

[Edit: there is a survey asking “what should we research?” The link to it appears in the menu on the mobile site, and in the left sidebar on the regular site.]

People have become a lot more active on the forums in the past few weeks. I’m enjoying the honest discussion, opportunities to see that others share some of my experiences and perspective (universality), and the feedback participants are providing about the site. If you are one of the active participants, thank you! (If you’ve joined or are considering joining, thank you!)

Most recently, two new categories have appeared on the forums: “Symptoms” and “Exercise.” I’m pleased to have more options, and very curious to see what people do with them.

Moody Monday

I’m reclassifying The Mood Network from “resource” to “opportunity for activism.” It’s a huge research project dedicated to developing better treatments for mood disorders based on the lived experiences of people who have them and our families. However, so far it looks more like a teaching model – “we’ll tell you” instead of “please tell us” – and the forums are practically dead. If this thing is going to work, it needs a lot of love.

Part of the "Participant Portal" page that becomes visible after signing in. Options include surveys to determine if you've ever had depression or mania, "ask the doctor," and discussion forums. Not visible: You can also read and comment on their blog.

Part of the “Participant Portal” page that becomes visible after signing in. Options include surveys to determine if you’ve ever had depression or mania, “ask the doctor,” and discussion forums. Not visible: You can also read and comment on their blog.

The Participant Portal, screenshot above, seems okay overall. I like the invitation to share our experiences. The forums and blog are the only places to do so, though. The surveys are similar to others you can find online, particularly at the Depression and Bipolar Support Alliance (one of the groups involved in this project.) I’m not sure if the “Ask the Doctor” option is unique among otherwise-available resources… But again it’s “ask the doctor” not “tell the doctor.”

I’ve been focusing on the forums the most and frankly, they are disheartening. A few people have gotten into discussing “Treatments,” but the “General Questions” forums are empty. I think the problem is that they create two mutually-exclusive categories that are ridiculously broad, unfocused, and don’t invite discussion of topics (or diagnoses) that may not fit neatly in either category. There is no way for participants to create new categories.

A screenshot of the "Forums" page. There are three categories: "Treatments," "General Questions about Depression," and "General Questions about Bipolar Disorder." Only the first category, "Treatments" has posts.

A screenshot of the “Forums” page. There are three categories: “Treatments,” “General Questions about Depression,” and “General Questions about Bipolar Disorder.” Only the first category, “Treatments” has posts.

I don’t know about other research participants, but I’m not there to ask questions; I’m there to share my experiences. Where is the space for us to share our stories? To discuss how mood disorders – and the associated stigma – impact our lives? To give feedback on our ability to access care and how health professionals treat us? Where is the space for our family members to discuss their experiences of living with and supporting us? What about those of us whose mental health issues don’t fit neatly into “Depression” or “Bipolar Disorder?”

One thing I’ve learned about research is that it’s important to come up with specific questions you want to answer via your research methodology. These researchers have created a space where they can ask us questions directly. They should use it! I can’t know what their questions are, but I can make some suggestions: “What makes a good therapist?” “What treatments have and haven’t worked for you?” “What barriers have you faced to accessing treatment?” “What can health professionals do to better meet your needs?” “What research do you think we should be doing?” Etc.

The words "Keep calm and formulate your research question" in gold against a red background

“Keep calm and formulate your research question” retrieved from the JEPS Bulletin.

Also, I’m annoyed that I had to choose “Male” or “Female” to register for the study. Gender (and physical sex) are so much more varied and complex than that! Trans* people face additional discrimination and erasure that definitely impact our mental health; those of us who are non-binary, fluid, agender, very proud of being trans*, etc. definitely don’t need more of that. Also, trans* people who transition medically may be taking hormones or have other unique medical needs that impact their response to medication and/or other treatments. These are all very important considerations for any health-related study.

Actually, that would be another great research question: “In what ways do systems of privilege and oppression (e.g. racism, sexism, cis- and/or heterosexism, wealth inequality, ableism, etc.) contribute to your mood disorder / symptoms?” I also like, “What community initiatives might help lower the incidence of mood disorders and/or make living with them easier?” Focusing on the medical aspect, “Do you have any medical condition(s) that have influenced the benefit you receive from treatment?” (I could probably do this all day.)

a masculine queer person, frowning and with arms crossed, is excluded from a conversation by other queer people taking place on the other side of a closed door

illustration by Jessica Krcmarik

Anyways, activism. I invite anyone who’s interested to join The Mood Network and light a fire under the researchers’ butts. Contact them directly with whatever feedback you deem appropriate, comment on their blog posts, start new discussions in the forums, send them links to mental health blogs. Spread the word. This is intended to help us, let’s make it our own!

Mental Health Resources

I was thrilled to learn that there is a Crisis Text Line for people in the United States. Send your text to 741741 any time you are in crisis to receive support. The organization is hiring and accepting volunteers. They’re also expanding to help people in other countries develop similar resources.

Additionally, MoodNetwork is a research study in which people with mood disorders and our family members can work as equal partners with doctors and researchers to develop better treatments. The network is currently accepting research participants.

I wanted today to be the start of something new and uplifting. I would start a Coursera course and actually stick with that for the full 4 to 5 weeks that it runs. But the courses that are available are insufferably boring! And, well, they’re on entrepreneurship. I’m not sure whether the idea I have is worth pursuing, or another grandiose project I’m going to abandon in a week or less. I guess, just by thinking that, I’ve already abandoned it…

I would start exercising every day. I would start tracking with a new wellness tracking app that I found. Well I did track but it wasn’t as satisfying as the Burns Depression Checklist. I wanted to share the checklist on the site by the way – so anyone who’s interested can use it to benefit their own mental health – but my request for permission to republish it was denied due to risk of piracy. It’s copyrighted material and all that jazz.

I wanted to write a blog post – well I guess I’m doing that. I would actually clean the apartment – well, I cleared some stuff from around and on my desk. It’s an improvement I can build upon, I guess.

I don’t know! something new, something interesting, being social for a change, making some kind of progress of my life… but I just don’t feel any of it.

The things I’ve tried, I’ve run into brick walls. I called the dentist and found out that the referral for the periodontist was denied, so I waited five weeks for a referral for nothing! My only option is to lose the tooth the dentist wanted to save because “I’m so young” and she didn’t want to “feel guilty.” Well it’s time for me to lay on the guilt! I’m in a worse situation now than if it had been pulled a month ago.

I shouldn’t have agreed to trying to see the periodontist, I should’ve just said that that tooth needs to be pulled and it could be out of my mouth already! I still have to wait for the referral to see an oral surgeon; I don’t even know how long it’s going to take! I hate not having any control over my own health. This is ridiculous!

It was a nice day today but I didn’t get outside while it was still daylight because I was looking at Facebook. and then it got dark and cold and I just… I know that I should try to listen to upbeat music and exercise is something that might help me, but I just don’t feel it! I feel like my limbs are made of lead, like I don’t have the energy to move my body, like maybe I should just go to sleep. Maybe if I go to bed now, tomorrow will be better. But I can’t even go to bed because Fox is coming home soon! He’ll wake me and I kind of want to hang out with him, kind of don’t. I’m not sure whether it’s that “I need some space” or “oh no I’m isolating, raise the red flags!” Maybe it’s a little bit of both.

Actually, I think I know what it is. He’s kind of running my life. I support him in getting to and from work each day. My schedule revolves around him. When he left for work he “encouraged” me to clean the house – like it’s something I’m doing for him. I ran an errand for him yesterday. He let his government-issued ID expire, so now Mom keeps lecturing me about how important it is for him to get a new one. He’d rather have off from work on a day when we can hang out with friends than during normal business hours so he can take care of this. She asks me about it and then gives me a hard time when I repeat what he said.

It really shouldn’t be my problem but somehow it is. I’m going to tell Mom this is my thing to talk to him about, and if she wants to talk to him about it she’s welcome to, but she’s not allowed to talk to me about it anymore because I’m not the one who has to do something, he is. It’s past time for her to get her nose out of my marriage!

I was going to say that I feel like I need to slow down, figure out where I am, and decide what I want to do. Like stopping at a rest stop, relieving myself, refueling, and looking at a map. I can do those things, but more importantly I need to fire my navigator.

And, well, I think it’s time to tell the hitchhiker he needs to drive his own car. I can’t focus on the stuff I need to do – for both of us! – if I make it my job to help him be an adult. I certainly can’t do it because my mom is all but forcing me to. I can barely take care of myself, never mind taking care of both of them!

I know what new thing I’m going to start this month: practicing mindfulness. Even just a few minutes a day should help me center myself and focus on what’s important to me, Ziya. I can even do it right now!

Depression Bipolar Support Group Week 1

I had a kind of awesome experience: I was getting frustrated trying (and failing) to find a support group or group therapy for people with depression and anxiety, so I asked for help. Within 20 minutes of my request, Mom suggested a local group by the Depression and Bipolar Support Alliance. I canceled my plans with Fox so I could attend group, which had the added bonus of giving me a blissful day to myself; I spent most of it writing the equivalent of 5 blog posts in my paper journal. There’s so much that’s been going on in my head but I haven’t been able to express it because we spend so much time in the same room… I literally can’t do anything without him being aware of it and vice versa. I… this was the third “blog post” I wrote in my journal; I don’t want it to derail my train of thought right now.

So I had a lovely day of reflection and brain-reorganization and then I went to this group. I was really looking forward to it as an opportunity to spend some time with people like me. No need to wear the mask. I could just arrive as I was, exist for 90 minutes, and respond spontaneously to whatever was going on around me. Kind of like what I do with my friends, actually, but with strangers.

I’ll be honest, I’m not sure I like being around people like me. They don’t make good eye contact and their lives are really difficult and they’re sad and anxious. They speak in monotone and their body language is weird and they look bored or tired. Sometimes they have trouble listening with empathy. The guy sitting next to me had something to say, loudly and energetically and with grand sweeping hand and arm gestures, in response to everything. And he touched me multiple times before I finally told him “I don’t like being touched” – which isn’t really true, but strangers randomly feel the need to touch my arms and it drives me crazy. You may only touch me if I gesture that I want a hug or put out my hand to shake. Common courtesy.

*spends a few minutes hugging the touched arm to zir chest, protecting it*

The facilitator passed a laminated piece of paper with the group goals written on it around the room, so each person had a turn to read one of the goals. They were things like “to create a supportive environment,” “to keep what is said here confidential,” and “to understand that this is a support group and not therapy.” We each had a minute (more or less) to talk about how we’ve been feeling; I and another new person were welcomed to the group. I talked about having to slow down because I’m having trouble balancing my mental health and school and it’s difficult for me to go into a helping profession while I need so much help myself. Joining the group is an attempt at self-care.

I wasn’t really able to say much else, mostly because of Mr. Response for Everything sitting next to me. I was very tempted to ask him to stop and give others a chance to talk, but I thought the facilitator would do that if he thought it was problematic and he said nothing. I was new, trying to get a feel for how the group operated, and I didn’t want to step on anyone’s toes. I fell into my habit of waiting for permission to speak up, and it never came.

Typical.

When we were putting our chairs away one of the other group members came over to talk to me. He thanked me for coming and said he was sorry I didn’t get a chance to share. He encouraged me to come back next week – I guess I looked like I wasn’t going to. Anyways, I appreciate him reaching out to me and I really hope I was able to communicate that. I felt overwhelmed and like I just wanted to get out of there as quickly as possible. On the way home I said a bunch of things to my car that would have been really helpful to say in group; maybe the other people there would have been able to, you know, support me.

There was so much going on that I could relate to, all too well. I almost didn’t have to say anything because in a way it was said for me, and I still got to listen to how others responded to it. Financial issues, mental health issues interfering with career development, feeling as though my peers are doing so much better than me even though I’m just as intelligent and knowledgeable (maybe moreso, in some instances), loss, coping with changes I can’t control, feeling like I have no motivation, no direction in life, being afraid to go to the doctor, trouble getting the healthcare I need… I’m sure there’s something I’m forgetting.

It was… not really what I’d hoped it would be. But it got me out of the house interacting with people, even if I wasn’t very effective at letting them know I was responding to what they said. I think I gained some benefit from it. And it felt good to be welcomed by a group and the individuals who reached out to me (even Mr. Touchy-Feel-y). I’m willing to let the experience be what it was, and see it as the beginning of a process (that will continue next week).