What I Need is What I Fear is What I Need

Wakana (my music therapist) has been helping me learn to assert myself, particularly in the realm of acknowledging, accepting, and acting on my emotions. I’ve learned to express my needs and wants, politely disagree, and set boundaries. I’m still working to develop these skills; it will probably be a lifelong process. But the foundation is there, and I feel pretty good about building on it.

The thing is, most of my work has been in the realm of one-on-one interactions. I have individual music therapy with Wakana. Our marriage counselor helps Fox and me have more intentional, supportive interactions with each other. I’m learning to assert myself in conversations with my mom, or situations in which Mom is accompanying me as I interact with another person (such as my dress fitting), or appointments with healthcare professionals.

I get lost in group situations. Even spending time with friends, there’s usually some point during our time together when I feel overwhelmed, overlooked, and unheard. I was barely able to participate in that one support group meeting I went to (no, I haven’t been back yet). Forget about being heard and acknowledged when my family is involved. I think about having most of my and Fox’s families all in one room just over a month from now and it seems like the worst idea I’ve ever had. If it’s not a disaster, it will definitely be overwhelming. I will probably be disappointed by at least some of them. What was I even thinking?

I really need to develop social skills. It’s not just me, people with psychiatric and/or mental health issues tend to have underdeveloped social skills. I’m inclined to believe that lack of a healthy home environment, same-age siblings or cousins, and appropriate modelling interfered with my ability to develop my social skills – particularly when it came to interacting within a group. I was also bullied and ostracized at school, which further limited my ability to practice social skills in a peer group. This in turn had a harmful impact on my mental health. I don’t know to what extent this hypothesis can be generalized, but we’re social creatures and society is the environment we have to adapt to.

Lack of social skills means we need group therapy and opportunities to practice interacting in structured group activities, so we can have some semblance of support in developing those skills. Actually, part of why I like tabletop gaming so much is because most games structure group interactions and lend themselves to turn-taking, so everyone gets some opportunity to be the center of a attention – seen and heard – for a short time.

Most of the psychological services I’ve been able to find in my area focus on the individual. Individual therapy, opportunities for individuals to submit their creative works to be posted online, classes individuals can attend and learn from that may provide some opportunity for group interaction, but that isn’t the primary focus. I have enough individual stuff going on, I really need to work on my social skills in a group. Why can’t I find one?

The answer is: because I’m afraid to find one. There’s a support group that meets weekly that I could be going to, but I keep finding some excuse not to go. I have briefly joined and enjoyed participating in at least 3 additional groups I can think of right now, I but stopped showing up after just one or two meetings, even though I’d had a positive experience.

I don’t know if it’s that I don’t fit in or I don’t want to fit in, or something else entirely. Maybe I want to abandon the group before it has the opportunity to abandon me – or worse, consume me. I don’t want being part of a group to mean losing my autonomy.

Being in a group situation takes all of my energy; I feel like I need to be at my best to come out of it feeling anything other than drained. To put it in terms of Spoon Theory, interacting in a group takes so many of my spoons that I can only do it on days when I have more spoons to begin with; most of the time it requires me to borrow spoons from the next day. Just getting out the door on time looking presentable can take several spoons. Sometimes, by the time I’ve introduced myself, I just don’t have the spoons I need to follow a conversation, navigate the complex thoughts and emotions that fill the room to the point where I don’t know which ones are actually mine, formulate responses, and get people to pay attention and listen to what I have to say. How can I develop social skills for interacting in a group if I don’t have enough spoons to exist in that group, never mind trying to learn something?

I need a group activity that restores spoons, such as creating music or art. Music in particular is a completely different way of interacting: you’re listening and “speaking” simultaneously, so everyone gets heard. You are a part of something bigger than yourself, you can hear it and that makes it so much easier to feel and internalize. Every part matters, even – no, especially! – the supportive, “background” parts.

I have less experience with art, but being creative is energizing. Focusing on my own artwork gives me a socially acceptable way to back out of the group activity a little bit to recharge without leaving it completely. It opens up the possibility of positive interactions, such as commenting on an aspect of someone else’s artwork (e.g. use of color) that I like. People are more likely to have and express more positive emotions that I don’t find overwhelming – I might actually get a high off them. I can also communicate something visually, so I don’t have to rely quite so much on the verbal communication I find so challenging.

Trying to find an arts-based group geared toward mental health in my area has been like hitting my head against a brick wall. Either I don’t know where to look, or they just don’t exist. I could reach out for help; that might be my best chance of actually managing to find something.

There are quite a few art-related groups in my area on Meetup.com; the difficulty I’m facing is selecting one I feel comfortable joining and might actually go to. Looking at some that seem promising, I feel like I’m going to cry because I simultaneously want to join in the fun and question my ability to do so. Will I be accepted?

Mental Illness Awareness Week

In honor of the work NAMI does, the first full week of October (10/5-11) is “Mental Illness Awareness Week.” People are encouraged to wear green, there’s apparently a solid green ribbon, and depending on your location there may be various events to raise awareness. People are also encouraged to “Tell your story and help inspire others!” – just be aware that the submission guidelines give NAMI permission to add or delete information as they see fit.

The phrases "It's time," "Mental illness affects everyone," and "Go green for Mental Illness Awareness Week" on a green background. There is a solid green ribbon in the center of the image.

Image from http://www.nami.org; Visitors are encouraged to post this as their Facebook profile picture and another image from the site as the banner on their timeline.

I have to admit, I’m not feeling particularly “inspired.” I’m pretty sure my “story” would be rejected because I don’t want to try to spin it (or allow it to be spun) to be a “message of hope” for other people. Frankly, I don’t think we need to spread “hope,” we need people to understand the harsh realities we and our loved ones face: the stigma, the uncertainty, the pain of thinking we’re getting better just to have another horrible day, the difficulty accessing mental healthcare, the ways in which our illnesses impact our relationships, etc. – basically, the stuff mental health bloggers post about year-round! If people really want to raise awareness, they should link to us. (Note: NAMI prohibits links to personal blogs or websites in their “You Are Not Alone” submission guidelines … but there’s nothing to keep someone from posting whatever links they want on their own social media pages, etc.)

Some places to get started (besides this blog): A Canvas of the Minds, Blog for Mental Health, The Mental Health Writers’ Guild, and Broken Light: A Photography Collective. I’ve selected these sites to link to here because they in turn link to individual bloggers who write about a wide range of mental health related topics. I welcome additional suggestions in comments!

Understanding our experiences is a good start, but it isn’t enough. We need to work together to change them – which means changing social, cultural, and especially institutional norms to be healthier for people (especially children) so we don’t get mental illnesses in the first place. I think most if not all of the “stigma” around mental illness exists because talking about it ultimately requires us to question and challenge norms that form the cultural and more importantly financial foundations for our societies, including: valuing people for their economic success, unattainable standards of beauty, pressure to conform to gender roles from birth (particularly masculinity), various intersecting systems of privilege and oppression, etc. etc. etc.

When I told Fox I was uncomfortable sharing my story – because it’s not the after-the-fact, good depressive “success” story they want to hear – he said it’s the story people need to hear. The here-I-am-right-in-the-middle-of-the-storm story. The I-don’t-know-how-long-I-can-hold-on reality. The “actually, I’m the one who could use some hope, because a big part of my problem right now is that I don’t have any.”

I’ve had mental illnesses on the “mood disorder” and “anxiety” spectra for most of my life, and I’ve been consistently living with diagnosable symptoms for over 4 years. I don’t even know what my diagnosis is, and frankly, I’m inclined to think that’s for the better. It’s frustrating to be unsure what to even say I have, but it means I and the people trying to help me can focus on my individual needs and what I’ve found to be helpful (or unhelpful). It means we can move past labels to the underlying psychological structures and processes that may have been adaptive at one point in my life, but came at a cost I can’t afford to keep paying.

In a word, it means I can focus on my own personal growth.

I think it’s great that in addition to Mental Health Awareness Month in May, there is a week in October dedicated to, well, basically the same thing. I kind of wish they didn’t call it Mental Illness Awareness Week though – because an illness is something outside of or other than oneself that affects one (hopefully temporarily) and needs to be treated, if possible, cured. It’s very easy for people to say “Well, I don’t have this illness, so this issue isn’t relevant to me;” if someone they care about has one or more mental illnesses, they may not even be aware of it (unlike with a less-stigmatized condition, which people would probably talk about).

Additionally, I haven’t found it helpful to think of my previously-adaptive, now increasingly problematic patterns of thought and behavior as an “illness” that is separate from and/or imposed upon my self. If anything, I’ve found it to be harmful; it means there’s something “wrong” with me that needs to be “fixed” in order for me to “function” in society, and until that happens I’m worth less than “healthy” individuals.

These patterns of thought and behavior, whether I like them or not, are part of me. I created them to protect me. They’ve helped me meet the demands placed on me by parents, other family members, teachers, employers, etc. They’re part of how I learned skills I still find useful, that are necessary if I ever want to have a career and other things that people associate with “functioning” and having a “normal” and/or “meaningful” life. Getting rid of them wholesale as part of “curing” my “mental illness” would be a disaster.

What I need, as mentioned earlier, is to grow. Part of that is letting go of the things that are hurting me or aren’t helping me any more. A lot of it is changing things that are adaptive in some ways, harmful in others. For example, my perfectionism: I place a very high value on creating the very best product I possibly can – such as well-written, relatable, informative blog posts. I put a lot of effort into accomplishing this, and gain a lot of satisfaction from doing so. Great. When I apply it to academic papers, the result is usually a grade of A. Fantastic. But I need to stop allowing my desire to produce the best quality product to keep me from starting the process, or to cause me to neglect my other needs and responsibilities during the process. I need to stop basing my self-esteem on how others respond (or don’t respond) to my work. I need to develop an inherent sense of self-worth, a concept I frankly don’t understand because it’s never been an intrinsic part of how I understand myself or the world; it’s not part of how I was raised or the society I was raised in. We value and celebrate people based on what they do, and deny people access to basic needs – never mind “rights” – because we don’t see them doing enough to “earn” it. The closest I can come to understanding inherent self-worth is to try to apply my belief that other people deserve to have their basic needs met no matter what to myself.

If there’s anything to be aware of during Mental Illness Awareness Week, I think it’s actually the message from NAMI that yes, it affects everyone. Everyone has to develop some unhealthy patterns of thought and behavior to survive in a society that was built by the privileged and wealthy to continue benefiting themselves at the expense of everyone else. These patterns influence how we treat each other and raise our kids and perceive ourselves. Some of us just show it more; we become the mirror no one wants to look at because they when they do, they see what they don’t want to know about themselves. I wish I could say something like “It’s not that scary,” but to be honest I still find it very difficult. I guess all I can ask is for people to pick up the mirror and pass it around, so we all have the opportunity to look. Wear green and post a selfie. Send out the message that this is important.