New Year~ aka, That Post Where I Talk Difficulties in Goal Setting

Hello folks! This is a more informal post than usual, so your patience is appreciated and I promise I’m working on a post more typical of my blog for sometime later this month! [Note: contains some mention of abuse and PTSD.]

I have a big goal this year- the same goal I had for my Birthday, and for Rosh Hashanah: write more. I enjoy writing, and I enjoy the feeling I have when I hit publish, and yet I write so rarely. Part of this is executive dysfunction, part of this is depression, and part is anxiety. Lately, I often find myself using the excuse of “well, if I’m doing so well right now, I ought to use that exclusively on work stuff!” any time I have more than a few minutes of good processing power in me. (In fact, when I’m done with this post I’ll probably work instead of doing any of the zillion things I should be doing for myself, being as how it’s technically winter break. Oops.)

If I have to quantify this goal- because I’m really trying to train my brain to think in SMART goals as well- I’m aiming, as always, for 12 posts minimum in 2016. I hate quantifying my yearly goals though. When I fail, there’s this wave of “not okay” that comes over me. Back when I did weight related rather than action related goals, this would trigger an eating disorder behavior of some sort.

But the big thing is really PTSD related. Any time I fail at anything- even something small that other people aren’t really bothered with- I have Rick’s voice in the back of my bead going, “If you weren’t so smart, we’d lock you away.” “We should lock you up, you are worthless.” “I don’t know why we bother keeping you at home.” On bad days, it leads to a dissociative episode. And really, this is usually UTTERLY disproportionate to the stimulus that triggered it, because that’s how PTSD works. Having a spelling error pointed out at the wrong time has lead to hours long episodes- I still work, in fact that might be all I do other than cry and repeat bad mantras, but it’s still there. I’ve had larger episodes that have faded in and out over a week. It’s ridiculous, really impacts my ability to behave professionally, but it’s also uncontrollable. I’ve gained the ability, slowly and over time, to make it more something that can be hidden behind the computer screen (thank you telecommuting- there’s no way I could last in an in person office at this point.) But even that doesn’t always work, because of the nature of a dissociative episode makes it even more difficult to conceptualize what works in a reasonable turn around. It, in short, sucks.

There are other general goals I have too, but they are perpetual ones that I always have. Leave the house at least once weekly, preferably more often and under my own steam but once with help satisfies it. If I don’t, the agoraphobia sets in heavily. It becomes increasingly difficult to leave, particularly under my own steam. Even my ability to call anyone on my very short “safe” list gets smaller. (Currently, the safe list is my parents, siblings, niece, eventual-BiL, and best friend.) And while I’m not always successful- thank you mix of mental health wackiness and chronic illness- It’s something I continue to try to work on, with no end in sight.

Speaking of, one of the things I’m going to aim for today? Walking to Sheetz in my town. (I made it to one of the pubs last night, though I got out before the NYE celebrants started showing up en mass.)

Heavy pale red headded femme in a Tardis Dress, Tardis head band, lots of makeup, and steam-punky jewelry in a pub

Here I am around 7pm New Years Eve about to leave the pub I made myself go to to fulfill my goal. I had the bouncer take this so I had a picture of the dress on me. [image description in alt text]

Try to work on phone phobia is another perpetual goal. This week, I actually called someplace to order food- and it was a big deal. I’m going to call my best friend, who it’s become harder to call, when I’m done with this paragraph. (Thank you new year for the scripted calls you make possible.) This aspect of my mental health disabilities is a particularly disabling one, both personally and professionally. Some of this has improved as people in general get more comfortable with ascribing meaning to online interactions. Some of it I’ve developed accommodations for myself, though the willingness to implement those accommodations is hit or miss, even in the cross-disability community. People just don’t get that I can speak on a webinar or scripted/semi-scripted telecast but can’t handle an actual phone call with ease. It’s an entirely different format to execute for me, but it’s still a struggle.

This is a thing that I’ve decided to work on- even though it’s disability related, and even though I still try to implement my accommodations. Sometimes it feels even more difficult, because too many people don’t get that the ways you are disabled fluctuate depending on a lot of- and sometimes difficult to identify- factors. But it’s something that seems an area that I want to work on, which is reasonable to work on, and which comes with many opportunities to celebrate small steps and have it understood by my fellow phone-phobics and phone-averse people as to why it’s worth celebrating, and why it’s worth working on. I don’t know if I’ll ever reach a point where the phobia is completely gone, or where I don’t need any accommodations sometimes, but I do hope that I can get to a point where I can still grit my way through the times where people aren’t willing to work with me about it.

(Aside: AH VOICEMAIL. What a glorious invention.)

I forgot one thing! And this is for you too! There’s an Instagram challenge that Two Thirds of the Planet is instigating this year called #365dayswithdisability! Just post a picture of your disabled self/life every day with the #365dayswithdisability tag on Instagram (or twitter, Insta is kind of hard to access if you don’t have a smart phone!) My personal Instagram is @nicocoer if you want to follow me!

Anyhow, I hope this post made you think about your own difficulties with setting and completing goals. Feel free to share those- or even just your new years goals!- in the comments below. Happy 2016!

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Quickly, Now, Present.

Yesterday, Linda Holmes wrote a review of Allie Brosh’s book (which you should all read– if you haven’t read her blog, she’s a painfully real yet comedic story teller, and if you have there’s some new pieces in it.) for NPR. Except it didn’t look like a lot of book reviews, it wasn’t static- it was more about what it means for Brosh (and others like Donald Glover) to write about their struggles not from the perspective of having overcome them or left them in the past, but of having them in the present. I feel like the following gets to the core of the essay:

But there’s something to be said for the currency of Brosh’s vivid, sometimes nervous-making chronicles, or of Glover’s scribbled notes. It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories. It presents a false sense of how hard those battles are. It understates the perilous sense of being in the middle of them. It understates how scary they are.  -Linda Holmes, Present Tense: Allie Brosh, Donald Glover, And Hurting Right Now, NPR

Holmes was talking about this in the form of writing- be it a book, a blog, or pictures of what you’ve scribbled out in a hotel room.  I do try to engage in this sort of writing myself, but so much of what has driven things has been the past. And I’ve told about my past so often, some of it has lost the painful desperation. Other things haven’t, and I try to limit my posts here on this blog to events that even when they are from the past are connected, somehow, with what things are right now. Current events, new perspectives, placing them within a larger context than “I.”

It’s difficult, but not as difficult as opening up about what is emotionally current in my life, In September, I started a post. I hope to get it out soon, but I’ve been saying that since the day I opened the tab to start writing it. It’s been difficult, even though the most intimate parts are there in the draft folder already, waiting for those finishing touches and paragraphs of framing research to connect it to the larger contexts. But it’s waiting, and going into the file means sitting there, paralyzed as to what words could possibly come next. And with that is a circling terror- is it safe to say this “aloud?” 

Writing about our current emotional statuses is hard. Allie Brosh has written a little bit about it, if I recall, though within the larger context of her depression. I know that when I keep trying to go back to any of the posts in my draft folder, terror comes out. It’s not just confronting the now, getting it out into words, though that too is difficult. Part of the terror is that every word I write brings me closer to sending it out into the world. And that can, indeed, put my freedom and peace of mind at risk, not because of a lack of privacy or anything like that, but because being as open and raw and now as that invites the care mongers to flood in. I fear greatly that people will react as though I don’t have steps in place, as though I’m not surviving through this, that I need rescued. That if maybe I was forced to the “right” doctors I wouldn’t have this now. (Hint: as someone who has had various points of this now for most of my life and have been in treatments for the majority of that time, you forcing me or having someone else force me into another hospital or care setting isn’t the “right” approach.) And by making it go out into the world, I’m putting myself at risk for your loving emotional violence.

I do write anyways. Not always here, but somewhere. I write poetry; I use tumblr. And part of that isn’t just because of writing, but because of the impact that writing can have. I know that writing can change a person’s mind or life— I’ve both been changed and have heard from people whose minds/lives I’ve helped change. But that action goes beyond writing, beyond casting into the void for another void-dweller to pick up and carry next to their heart.

Because that power goes beyond it. I’ve been involved with advocacy for many years now, since I was a child. Large chunks of that has been in mental health advocacy. And when the topic of ferreting out some more, new advocates comes up, the family members present and the service system people present always tag on something I find both counter productive and slightly obscene: “… who are stable/well/successfully managing their Mental Issues now.”

Don’t get me wrong- it’s important to take care of one’s self and to take time for yourself in this work.  Immeasurably so. But that is something different entirely from what those words say. They say that the people who frame themselves as our allies don’t see us as worth working with. That our insights must necessarily be wrong, or useless, or both. It says that they care more about our pasts than our present, let alone our futures.

I hear these words from people who are supposed to be working on changing or reforming the system as it stands right now, and it’s clear they don’t actually want the words and experiences and, yes, wisdom of the people who are in it right now. These people seem, from here, to want to insulate themselves from the difficulties and fear that they would be confronted with in working with someone who they know is “still in it.” They can’t wrap their heads around following through with the needed support to actually work with “those” people— consciously or not, they cling to the idea of supporting a person with Serious Mental Illness (a technical classification) being both a burden and necessarily paternalistic in nature. I do hope that for most of the people I work with it isn’t a conscious thought, but it comes out here and there, and not just on this issue.

It’s a deeply misleading flaw, as much as relying on written narratives which makes those struggles into a past. Then we sit and wonder what went wrong in our efforts, even though the very reasons we bring to people to justify advisories like ours tell us why. We go to offices and we say, “Self advocate advisories are needed because you can’t see what the flaws are if you aren’t on the end that will experience them. You can’t watch flaws in a plan that about a life outside of your experience.”

There are other things wrong with the “but are well now” direction. It dis-empowers people further who are already dis-empowered on both societal and systemic levels. It enforces a framework that leaves those with disabilities that are life long, including those with DDs, being seen as less “valid” observers and contributors. It further continues the stigma about being actively mentally ill, even within circles that claim to push for de-stigmatization. It reinforces the messages that we’ve internalized telling us our voices are worthless. But as far as a fatal functional flaw? I believe that Holmes’s comments on writing are the crux of it.

 It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories.

Daylight (A Personal Note on Winter)

I am multiply disabled. I’m even disabled neurologically in more than one way. I am an Autistic with anxiety and depression, cataplexy (possibly narcolepsy going by family history), learning disabilities, and a tendency toward agoraphobic episodes. For some reason, those interact to my least benefit during the winter months.

First, I become anxious and distracted. My anxiety starts making acting on my knowledge instead of my anxiety difficult in November. I begin to worry about things that I am otherwise never in doubt of. I try to fight my anxiety, but this sometimes means I say or do things that make people feel blamed or sad. But I don’t have a strong enough filter at this point to turn it off.

By the end of December I’m depressed, isolated, and feeling as though I am not doing well at non-“work” related interactions. Sometimes circumstances make this more intense. I have family members who too often do things that will set off some of my trauma related issues, leading to ongoing tensions and misunderstandings.

I also come from a family with multiple faith traditions– most of my extended family are Christian, and some of a more conservative sort of Christianity that has essential conflicts with my beliefs. Accordingly, I have received gifts ranging from christian themed chocolate (which as much as I question why a devote christian would be cool with eating chocolate Jesus, I deal with because a) chocolate and b) They usually go to support their churches charitable works) to inspirational novels about a “lost” woman coming to christianity via a man– something that becomes a bit offensive when you realize that they all know I’m not remotely Christian and in fact follow Judaism. Additionally, that side of the family’s Family Dinners tend to be very pork centric, and I end up eating potatoes, rolls and sometimes salad if my mother made it.

I don’t really have access to my own faith community due to our location, which makes a lot of these little things less easy to put up with. It is indeed harder to deal with microaggressions when it’s difficult to find others. Indeed, the things that don’t bother my friends so much in areas with substantial Jewish communities are harder here where there isn’t a community to fall back on.

January, I reach the point where I feel incompetent. I don’t follow through with the things I need to do to maintain my personal relationships, interacting primarily in indirect ways, avoiding direct personal interaction. My interactions are instead primarily related to the efforts I maintain in advocacy or other work interactions. I feel apathetic about most personal things on an emotional level at this point- nothing seems particularly appealing to an extreme amount. I force myself to leave the house every few days, because otherwise I’ll need someone else’s physical presence to leave. It becomes an overwhelming thing to leave home, more so than any other episodes of agoraphobia I have throughout the year, easier to rationalize with the weather though it might be.

By February, without my consent, I find myself angry at myself. I know that these patterns are a function of my anxiety and depression meeting up with the decrease in available sunlight, but I still feel upset. Frustrated that this year I couldn’t prevent it. Especially as I begin to notice the way people are to it everything that has happened. I’ve lost friends from it in the past, had them assume that my going without directly personally interacting for a while was about me being upset with them. (This is according to what they’ve told me.) It’s more than my periods of not knowing when  to contact people or where I stand are. This is more.

I know this is hard. It is a hardness I both feel and hear from others. I know that I am not an easy friend. I know that this is a convergence of the least beneficial parts of me. But that they are parts of me, parts that at other times come together in other ways under different lights.

This is a personal note. A request to those who know me personally to grant me patience in the winter. To know it’s not about our relationships, but about my brain chemistry, unsure how to adapt quickly enough.

To have faith that the world will turn, the tilt shifting, and that spring- and daylight- will come again.

It Goes All Ways

Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities. 

When I was 20, I did not love myself.

I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.

I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed: I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self care plan.

“What about having kids some day?”

I told her I didn’t think so. I feared. I feared that I’d be incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations, and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support— I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.

People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened with those orders. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is even seen as remote.

To be clear: I know plenty of people who have chosen not to have kids.  They made a choice to be child free, of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.

I don’t consider my choices when I was 20 about kids to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I had internalized that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad parent, or an incapable one. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.

Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had these rights.

I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism, and uprooting that is a long process that never seems to be over.

About 5 years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options— I know, as I was one of the people who went over them with her— and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.

My sister has had the support of our parents and other family members in the 4 years, almost 3 months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent.  During this time, I became less and less afraid to ask for supports and accommodation, and slowly gaining the words to communicate and to define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.

I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.

There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle/treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.

Fertility treatments can be harder to get when you are disabled.  While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%).  Adoption, too, is more difficult.

And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)

I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times where I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are more an more on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.

I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice— about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.

This is a choice that I’m wanting to make and someday follow through on— and finally, it’s of my own free will.

Shreds

I am not really sure how to start this post, in part because I feel like saying anything would be a risk. A risk to my on going well being, a risk to my security in housing, in healthcare, in access to the basics. But I think that that fear is just a symptom of what I’m talking about.

Last March, my placement on SSI was approved by a judge. I think my lawyer was a good one, even though he was the sort of man who terrifies me because his demeanor triggers some unpleasant memories. The judge didn’t even ask me to come into the courtroom- he decided based on my paperwork to offer me a deal which included me having a payee, which is actually something that is preferable to me because of the sort of things I have difficulties with. The waiting room was tense, and there was plenty of papers to sign, but in the end it turned out alright. My mother and I went to the sushi place across from the courthouse there in Wexford, and I had avacado and cucumber sushi.

The problem lies in what it took to get to that point. You see, the entire process involved looking at everything I can do, and find the limits, the deficits, and the flaws. Highlighting the things that I can’t do, and expounding rather than ignoring or accommodating for how they touch every single aspect of my life. There is nothing that was allowed to be “good”- not even something relatively meaningless like my IQ, which the lawyer was displeased with.

My lawyer was very thorough with his prep. Really, that is part of why he’s a great lawyer for this sort of law. He knows what they are looking for, and he is forthright. It’s a difficult process, even with the assistance in figuring out the paperwork and who to talk to to get the evidence that is asked for and so on. It is hard work, draining and demoralizing, even with the support I had.

Part of the prep work involves the lawyer working with you to help you communicate how thoroughly your disability impacts your life. I had been brought up by a mother who tried to emphasize strengths based approaches, ones that could limit some of the trauma that society can cause when your brain or body doesn’t work within the range that the average person does. This process was the opposite. My strengths were to be minimized, the limits that my disabilities put on them emphasized. Uplifting language was considered not appropriate, as it was said to disguise the impact that my struggles have.

That I believe in and on my good days fight for disability rights was even considered a hindrance  My lawyer told me he hates activist/advocate clients, and only because we have harder cases to make. The language and work that keeps us from despair, that gives us some hope that some day life will not be as much of an up hill battle, that says that we should and someday will be seen as equal- all of this was something that is looked down on and despised. The fact that we want to and can envision the sort of world where the supports and environments we need to not have to go through the SSI/SSDI process in order to survive is too uplifting, too insightful for us to need and “deserve” anything in the right now. The fact that it is just a hope that is still being worked toward, that that world where those supports exist isn’t here fully yet, is irrelevant when it is something we believe in.

The preparation process also involved undermining a lot of the work I had done to allow myself to get by in my day to day life with a limited number of meltdowns and panic attacks. I still deal daily with memories of the things that were said to me by my step father and some of the providers when I was young. I have many little things that will trigger the memories, that will make me slip into the words that were said. Before going through this process, I had a few things that I would repeat to myself to counter them- it didn’t make them go away, but it made it so that I was left with shorter periods of distress, or delayed reactions. But part of the process was to emphasize the counter arguments- that is, to repeat in a not as cruel way the things that caused me trauma in the first place about myself. To emphasize incompetence  the futility of the things I have achieved and the impossibility of success at the things that I wanted. To demonstrate less than.

I find myself, now, more incapacitated by these things than I have in years.

Throughout, I’ve clung to my advocacy and activism around disability. I’ve felt like a hypocrite, or like I was-had to be- doing it for someone else, because what was being re-taught to me was so against it all. But I’ve also felt like I was surviving, that this work was like some sort of safety line. I don’t know how well or if I would have survived it without.

Perhaps the level of struggle I’m having has to do with the nature of some of my disabilities. That perhaps the anxiety disorder processes and the tendency toward fixation from being autistic are what they call a perfect storm, moving towards a cataclysmic failure when they interact with a system that encourages devaluing. The part of me that thinks this reflects about the way that some of my friends don’t seem as traumatized as I feel from their time going through this. I know that in some cases this isn’t true- it’s just not something they want to or can discuss. I know trauma is like that, from both personal experience and from the writings of others. And yes, perhaps some really weren’t traumatized by the process, left struggling inside more while their supports and safety outside are stronger.

But as much as the part of my brain where the fear lives fixates on that, the part where logic lives knows that it’s irrelevant. No one should be coming out of this process struggling emotionally more than when they entered it. They should be in a position where the security and services that become available allow them to gain skills, either to better their quality of life or to eventually not need financial support, even if they do need the medical. None of us should be having to scrape back old skills because we lost the connections that allowed for them.

I’m terrified to post this. But perhaps that is because of what I’ve written- and maybe that fear is what has kept someone else isolated too.

Finding a Positive Experience- or, New Psychiatrist

[Content: summary of improper/abusive medication practices on a minor, detailed descriptions of a Psychiatrist appointment.]

I had my first truly positive experience with a psychiatrist. I don’t know for sure that it’s him, the facility he works out of, or just that my needs and his techniques lined up. But I do know that I wanted to share what happened, especially in light of the number of horrible or even traumatic experiences I’ve had with others in the past.

When I was a kid, I was medicated and medicated badly. It seems like every med that came out, I got tried on, in a wide range of uses. Indeed, some of the things I was medicated for was caused by other medications. very rarely was my body allowed to detox from one medication before starting another. And every visit- once every 3 months- my medications would change again.

I have a long long list of things I will not ever allow that is written in my Mental Health Advanced Directive. Some of the things were given to me as a form of long term chemical restraint on the part of the doctors, particularly after my childhood in patient hospitalizations. Some were given to me based on appointments where the doctor fell asleep during the appointment, and then would write down notes that could only be explained by falling asleep and dreaming while my mother was talking. That is my mother’s belief of what happened, and she saw the notes. All I know is I sat in the appointments and watched her nap through my mother’s talking.

I was on so many medications that I cannot list my past meds completely. I can list a few. Sometimes I can even check boxes off a list, but even then I miss some. I know I gained 60 lbs in 3 months at age 12 from Depakote. (Even when I was Bulimic in High school, I never have been able to get below the weight I gained then.) I know that on Risperdal, I became violent seemingly out of no where. I know that on multiple occasions, Seroquel was used to increase compliance and ease of handling by staff- and the vast majority of the other young people seeking treatment at those places that prescribed it were on it as well. Prozac made me manic as an adult, and made my compulsive behaviors more difficult to control- and I was house bound at that point. The list is seemingly endless.

All of this in addition to the disrespectful and disregarding attitudes and actions on the part of the people prescribing. Don’t get me wrong, I had some okay-ish Psychiatrists once or twice. I even had two who *wanted* to be helpful to me. One of them advised taking me off of medications completely when I was 14, upon which time the behaviors my mother found most concerning either diminished or vanished.

(A side note: My mother, not being a Psychiatrist and living in a rural area, followed advice on the med side of things. Over time her records and increasing advocacy skills lead to my getting to the doctor I had when I was 14. Those same skills also helped her teach me advocacy skills.)

But the vast majority of my psychiatrists were not respectful and wouldn’t listen to my internal experiences and motivations for the behaviors they were trying to medicate away.  I don’t remember having someone talk through their process, take my input seriously, or give me options that were tenable. I definitely don’t remember a Psychiatrist who  was comfortable with leaving behaviors I didn’t want or care to treat alone.

As a result of all of this, I have what I think is a pretty well earned fear around seeing psychiatrists. For several years, I’ve been having my general practitioner manage my medications. (I’ve been back on meds off and on since I turned 18.) However, my other supports indicated that seeing a psychiatrist was a good idea and Medical Assistance threatened to drop me if I didn’t try to find one.

We started looking for a Psychiatrist. I was looking specifically for someone with experience dealing with Autistic adults and anxiety. The nearest we could find with sufficient experience was the Merck Center in Pittsburgh. My Case Manager helped me and my mother do the pre-visit medical history and needs paperwork. At first I was concerned. A number of my behaviors that are not things I was looking to treat were on the list as check boxes, while other things I had no idea how frequent they were.

On February 17th, I had my appointment. I was scheduled with Dr. Hudak for that morning, and I took my mom with me. They had used my papers to figure out which of their doctors would be most appropriate to my personal needs. This alone is an improvement over many of the programs I’ve gone through where case load determines your doctor, not specialty.

I bring my mother to these appointments for a couple of reasons. She functions as support staff, where she helps navigate administrative issues, pick up on cues and behavioral aspects of people who are new to me, and helps out with remembering when and how things happened. But she’s also there because, should I become incapacitated, she will be the one needing to know what I want as far as treatment, accommodations, and other needs.

The waiting room was plain, and the unfamiliar check in process was a little nerve wracking for me. I was pretty oblivious to the people there, as my fears about the appointment made it hard to observe there. However, my mother says that she found everyone helpful- which seems familiar- and that when she was observing the other people there for services, no one seemed anxious. I don’t know how often you’ve had a chance to sit in a Psychiatric waiting room, but they are usually full of worried and anxious to be there people.

The doctor came out to get me, and got confirmation from me that I wanted my mother in the actual appointment with me. Then he lead us back to his office. I noticed a lot of books on OCD, Anxiety, and ASDs on his book shelf. That was comforting to me. My mom found his office to have the right balance of personal vs professional to make him seem like a real person.

He was definitely very interested in my internal experiences of my anxiety, and worked hard to understand how I was communicating that inner experience of it. He didn’t disregard or shoo away my internal experiences, which was a pleasant shock for me. I’ve had a lot of doctors- even medical ones- disregard my internal experiences to focus on external behaviors and evidences, and as a minor focus on other people’s reports on my behavior.

He addressed all of his questions to me, unless I then asked my mom to elaborate on a point that I couldn’t remember the details of or that I was having a hard time putting into words. He was very good from my perspective of understanding and negotiating that she was there as my support staff. My mother felt that he was good at asking her appropriate questions, and felt that he listened to me well.

What I appreciated- and what some  people don’t like- was that he was excellent at talking through his process with me as he goes. This is one of the key access needs I have with any doctor, and I felt that he was very good at it. My mother’s impression of this aspect was that he was thorough and that his process reflected that he was actually listening to my input. It was the first access need I remember mentioning (other than explaining a stim toy) to him, and one that he seemed pleased to hear as it is the way he works. I understand some people don’t like this feature in a doctor, but it reassures me that I am being well informed as well as that the doctor is considering my remarks. It also makes me feel more confident in the outcomes of an appointment.

Something that I didn’t fixate on but that my mother has highlighted to me as I was working on this entry was that he was very direct about wanting to meet my needs. He asked about what there was he could do to make me feel more comfortable in his office, especially in light of my fear around Psychiatrists. He made sure he was aware of what accommodations I might need, as well as the role of my mother. He made sure to let us know that we should feel free to communicate needs in the future as well.

When it came time to make choices about medications, he talked about his thoughts on the issue, as well as how things would work with my other medications. When I made it clear that it is my anxiety, not so much the other things, that I am seeking his help with, I felt that he was very supportive. He gave me two medications to chose from. One had a greater chance of success, but might have side effects. The other has fewer side effects but some people don’t find that it works well enough.

Because of the history I have with horrible and unexpected side effects, I chose the second one, which is called Buspar. (It’s been okay so far, but this post is about the visit itself, not the medications.) He was very good at answering my questions about the medications. He also made sure to assure me that if we end up unsatisfied with the Buspar, the other medication is still an option.

When I asked him if it would effect my “twitchies” he told me that it might reduce any that are anxiety triggered, but only because the anxiety would be less frequent. Other wise, I shouldn’t expect to see any changes in the twitchies, which is a good thing because they (both tics and stims) are a part of me that I’m okay with. He was very accepting, I felt, of my wishes to keep my stims and their value as self soothing or self focusing/regulating strategies.

I had one of my stim toys, a mop slipper that is both green and a texture that I enjoy, with me the entire time, and he seemed to have no issues with it that were apparent to either myself or to my mother. She agrees with me that he respected that stims and to some extent tics are a part of myself that I am at peace with and embrace in myself.

After he made sure that all my questions and comments were answered, he let us out and had us schedule a follow up for late April.

Overall, it was one of the most positive experiences visiting a psychiatrist that I can remember.