Can I please be a shapeshifter now?

Fuck. I was supposed to do things today, I like don’t even remember what they were – except that one was to get a short ‘androgynous’ haircut. I did other stuff, which I guess is good. But not the things that would’ve made packing for a 3-day family thing tonight much much easier. Or, you know, having it done already.

I cut an overdue phone conversation with Banji short to go pick Fox up. When we got home Mom was waiting for us. We had some good conversation; she’s helpful. But I was thirsty and starting to freak out that our fancy clothes were wrinkling in the wash. So I excused myself (not an easy task with Mom) and took care of it. I could tell I was on the edge, needed space from her.

I come out of the laundry room to Mom holding a blouse. It’s a thing with her. She has her ideas of what I should wear and tries to be helpful and I feel like she’s forcing her own style onto me. It’s worse now being openly genderfluid because feminine clothing tends to trigger my dysphoria.

90% of the time I go ‘gender neutral’: jeans cut for a person with big hips and thighs, a ‘unisex’ t-shirt or hoodie (or tank top), walking shoes that are marketed to men. Harder to do that with formal wear. So I’ve got my general “what to wear” anxiety on top of “fuck people are going to misgender me” anxiety on top of “I don’t even know if I’m going to feel more masculine or feminine” anxiety on top of “what will Fox’s family think if I go masculine?” anxiety. (I have a binder and a men’s dress shirt and I want to say I’m not afraid to wear them but honestly I kinda am.)

And apparently we’re sharing a room with his sister now, I thought it was gonna be just us (his parents are paying for it). So my hope that this would be a sort of extended ‘date night’ enjoying ‘us time’ away from our normal routine is … well, maybe not shattered, but more complicated. We can’t necessarily just retreat to our room if we need space (or want to do stuff that requires privacy) we have to coordinate with his sister. Who … how do I put this diplomatically? … well, she’s my husband’s sister.

My brain broke and it’s taking all my effort not to be an asshole.

Memorial Day

Content Note: In this post I express views that are strongly anti-war, anti-violence, and anti-militarism. I mean no disrespect to veterans, active duty military personnel, or military families.

Memorial Day is traditionally a day to honor those who have died during military service, particularly in war. It originated after the Civil War.

The parade in my town passes my street, just a couple doors down from my house. I’ve marched in it, as have my father and my dog. I don’t remember the last time I actively attended, but I hear the drums, bagpipes, and sirens every year. They bring back memories – this year, of what may have been the last time all three of us were at the parade together.

It hurts.

But this isn’t about me. It’s about the people who give their lives and sacrifice their mental health – for what? Gone are the days when we engaged in wars that were actually for something. Now we just have ongoing military conflict that could more accurately be described as terrorism, wasting millions or billions of dollars on the kinds of weapons we claim to be trying to prevent, devastating entire countries, ruining the lives of millions, creating refugees, and creating the very terrorists we claim to be fighting. For what? Corporate greed and US imperialism.

Our military personnel and veterans die of friendly fire and suicide, in service not to our country, but to the greed of the wealthiest people in the world. We shouldn’t just remember our soldiers, we shouldn’t even just mourn, we need to stand up for them. Demand an end to this wasteful violence.

And in the meantime, do whatever we can to protect and improve their mental health. (Also physical health, making sure they have access to healthy food, safe affordable housing, and a fair income whether they choose to work or not, etc.)

I feel like I “dropped the ball” on Mental Health Awareness Month, but there are still a couple days left in May. Today I’d like to share 2 links that seem particularly appropriate:

Veterans & Active Duty

The National Alliance on Mental Illness (NAMI) has information and links to resources for veterans and active duty personnel that may be helpful in protecting one’s career, accessing mental health services, assisting fellow soldiers, and transitioning to civilian life.

Family Members & Caregivers

Members of military families, or probably any family, may benefit from the information and resources offered by NAMI. Please note that “the information here” is linked to in a separate column on the left side of the page.

Solidarity.

I’m not a sidhe, I’m a dragon

I’ve been out of sorts since last Thursday. Mom and I went to visit with her brother’s family for the weekend; overall we had a very good time, but it took a lot out of me. We went to my cousin’s baby shower, a giant social gathering where I didn’t know most of the people and there weren’t assigned seats. I felt myself freezing up and becoming overwhelmed by anxiety. Somehow the anxiety took me by surprise; I guess since the depression is (mostly) better, I expected to feel less anxious, too? Thank goodness my (other) cousin introduced me to people. I got to meet 2 musicians and talk with them about music therapy – that was a lot of fun!

For some reason people – especially my mom – feel the need to talk about me in third person when I’m literally right next to them, even if they’re talking to me. I don’t get it. All I heard all weekend was “she,” a wall of it with razor sharp spikes flying right at me. When Mom and her siblings talk, there is no getting a word in… and I really really hate interrupting people to correct them on their pronoun use. I’ve learned that people don’t like being corrected on how they’re saying something, they want you to hear what they’re saying and respond appropriately. That makes it harder for me to stand up for myself.

illustrations of a masculine-presenting person being crowded out by feminine words (e.g.

cartoon by sleepyllama

If I thought I felt nervous at the baby shower, it was nothing compared to how anxious I get about trying to tell people I’m non-binary and “prefer” gender-neutral pronouns: they/them/their or ze/zir. My throat tightens and my jaw clenches, making it physically impossible for me to say anything.

Worse, there’s no opening for it in most social situations. I mean I guess when people ask me how I’ve been I can say, “Great! I’ve come to accept my non-binary gender identity and I’ve decided that I want people to refer to me using gender-neutral pronouns.” But other than that, it’s hard to figure out when and how to bring it up. People are used to assuming – from their perspective, “knowing” – a person’s gender based on appearance. It’s not something people usually talk about.

I wish I could have this conversation!
(image by Tony Toggles)

Between the baby shower and another cousin bringing his 2 young children to visit, there were a lot of interactions going on based on binary gender. Fox wasn’t invited to the baby shower, but people were surprised he didn’t come to hang out at the house with the other men. (If I’d wanted to hang out at the house with the men, there probably would have been some confusion and “encouragement” to go to the shower.) When we got back, the women assured the men that the “games” we played at the shower “wouldn’t have interested” them. I think guys are perfectly capable of deciding for themselves how interested they are in unscrambling words, thinking about things related to babies, and watching people open presents.

We don’t know what sex organs the new baby has yet, so there’s talk about “whether it’ll be a boy or a girl” and “if it’s a boy this; if it’s a girl, that.”

2-tier cake with the text

found on pinterest

Referring to my cousin’s two-year-old child, my aunt actually said, “He’s a boy, so he’ll need to toughen up.” We have no way of knowing how this child will identify by the time he’s an adult. Regardless of whether he’s a boy/man, gender norms that require him to be “tough” only hurt him and increase the likelihood that he might hurt others.

My aunt, uncle, cousins, and mom are awesome, friendly, kindhearted people. I went out of my way to spend a weekend with them – clearly I must like them, at least a little bit. Yet I didn’t feel safe asking them to change the ways in which they think and talk about me, even – especially! – when it was causing me emotional distress. My “coming out” would be too at odds with everything they were expressing about gender.

I’m not sure how I expected them to respond. Asking me to explain myself? Reasserting the gender they’ve assigned to me? I don’t think they’d be physically violent – but maybe annoyed? Saying they don’t understand? I tend to expect people to say they’ll try to use my pronouns but they might make mistakes; what’s important to me is that they’re willing to try.

image by Solomon Fletcher – shared here because it’s true of me, too

I tried to talk to Mom about it. I asked her to use my name instead of pronouns, as a sort of compromise. She said “I’m just talking, I’m not really thinking about it.” That hurt a lot, because to me it felt like she was prioritizing her ability to “babble” (her word, not mine) over respecting me as a person.

Then on Tuesday she started talking to me when she knew I had to leave for an appointment, wouldn’t leave me alone so I could finish getting ready, and almost made me late! I was furious with her and did my best to avoid her for over a day. I’ve been shutting out the world, feeling very grumpy. I felt so bad I couldn’t even go to a meeting for trans* people of all genders (at which I wouldn’t have known anyone). There were multiple factors (including concern about my safety) but the bottom line was I didn’t want to meet new people and otherwise be social, nor did I have the energy. I’m very disappointed because I really need a community right now and I’d rescheduled my music therapy session so I could go.

On Thursday Mom lured me out of hiding by offering me food. We talked a bit and agreed to respect each other more. She asked me to make more of an effort to respond when she tries to talk to me and to show appreciation for the help she gives me. And I was able to tell her that I need her not only to respect and use my pronouns, but to be an ally. During the conversation she talked to me about me (?) and used the wrong pronoun no less than 5 times.

“Ze,” I corrected, and she apologized.

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.

Themes in my Sims 3 Legacy

Last week Wakana asked me to write down the themes that have emerged in my playing of The Sims 3. The themes I’ve recognized so far can be categorized as Social, Vocational, and Existential. One – perhaps the – major theme inherent to the game is Death.

Social Themes

  • being accepted as I am and supported in fulfilling my dreams
  • emphasis on family relationships and friendships, not romance and marriage
  • “loner” vs. charismatic socialite who makes friends easily
  • communication even when it is perceived as “mean” (i.e. assertiveness, honesty)
  • What influence does the perception of others have on my life?
  • dressing stylishly to improve my confidence and to express myself
  • maintaining and strengthening relationships

Vocational Themes

  • balancing goals, responsibilities, needs, and impulses
  • socioeconomic mobility
  • building on the success of previous generations
  • adapting to life circumstances
  • pursuing passion vs doing what it takes to pay the bills
  • innovation even when others think I am and/or my ideas are crazy
  • motherhood; balancing work and family
  • working together within the family to help everyone meet their vocational goals
  • living a successful and fulfilling life with a mood disorder
  • “reaching the top” of my career
  • I have the knowledge and skill I need to fulfill my goals, but how do I find the required “ingredients” (e.g. internship)?

Existential Themes

  • What is my connection to the past?
    • e.g. family tree / heredity / lack of connection with parents & grandparents
  • accepting what already exists and building on it
  • What influence will I have on future generations?

Death

  • the pain of losing loved ones / important relationships
  • change, especially in family dynamics & relationships
  • being haunted by (the memory of) a deceased loved one
  • happens to everyone, but we can’t know when or how

Today we talked about the social themes. I need to stop caring what other people think about me, accept myself, and be authentic. I’ve made some good progress in that department, and it’s a process I continue to engage in. During our session she got me to tap into, name, and own some of my inner resources. (“That person who was just talking to me, who’s that?” “Me!”) I’ve also been doing all sorts of awesome adult things all day – despite being tired, sad, and (most recently) nauseous. It feels good.

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.