Monthly Archives: January 2010

Confidentiality Struggles on Inpatient Psych Units

I’ve found that during my psychiatric hospitalizations working to maintain my confidentiality has been an issue.

I’ve never been hospitalized for non-psychiatric reasons, so I don’t have a perfect comparison. From observing while visiting family in the hospital I can tell that any hospitalization seems to result in some level of decreased confidentiality. When there’s a shared room it’s near impossible to keep everything private. You might not know details, but there is often at least a vague sense of what your roommate’s problem is. Family members who visit, often speak with the doctor without the presence of the patient, creating a risk that information will be communicated that the patient might have not wanted shared.

At my first hospitalization there was some posturing about confidentiality. Cameras including camera phones were banned and the lack of names on doors was emphasized.
I had a terrifying experience of 24 hours in the ER and was refusing to sign the form to be admitted. I wanted to go to a different hospital, but they wouldn’t let me. I asked if I could maybe see the unit first to see that it wasn’t scary. I was told I couldn’t have a tour because of confidentiality issues. This seemed reasonable. Eventually I gave in a signed the form.

A couple of years later I heard from a friend who was considering going inpatient at a different hospital for medication adjustments. He had been given a tour of the unit he would stay on before making his decision. So it appears this rule is not consistent between hospitals.

It seems the most significant confidentiality difference between general medical hospitalizations and psychiatric ones is that for psychiatric admissions patients are specifically encouraged to interact.
In fact, not interacting with other patients will likely be looked upon as a symptom.
Rather than staying in your room in bed all day there are common areas and group activities.

It might seem like that activity group is purely recreational, designed to break up an otherwise empty day. Wrong! In all of my records there are notes of my behavior during those types of activities.
One form for an arts activity group says simply that I attended and comments, “Very quiet- worked with no discussion with peers”. Never mind that I was focused and enjoying that I was doing. All that mattered as a record for that hour was my silence.

The problem of communicating with other patients is that all of a sudden your hospitalization is no longer just a relationship between you and medical professionals, now others are added into the mix. These others have no ethical responsibility to uphold confidentiality.
I know that sometimes outpatient group therapy groups discuss that what is said there should stay confidential, but I’ve never heard any sort of similar comment discussed in an inpatient setting.

Despite this, I have found the unstructured social time of inpatient settings to be one of the few helpful things I have gotten out of my hospitalizations.
I’m so secretive in general that it’s nice to be able to talk without the fear that I will be judged for my ‘crazy’.

But information besides what I choose to disclose also gets revealed. If I was in my room crying all morning, people know. There’s no hiding it. If I go back to one-on-one security, people know my suicide risk was deemed increased.

Sometimes check-in meetings with psychiatrists were conducted in the hallways where anyone could hear. I’d whisper everything and usually reveal less information as a result.

This makes visitors a very anxiety provoking experience. On the one hand it’s nice to get a visitor, on the other hand those visitors are generally my parents. I don’t tell my parents much of anything. They receive the most vague information possible. I worry about another patient blurting out something private about me in their presence.

At the first hospitalization visitors were let onto the unit and were allowed to all the same places I had access to. So much for that “No Tours” rule.
There was no private place to meet. They could go in my room, but I also had a roommate. I was on edge during all the visits, trying to steer them away from anyone I’d communicated with.

The second and third hospitalizations had rooms where visitors and patients could meet for more privacy. The second still allowed family access to the rest of the unit thus compromising confidentiality of anyone there. What if a visitor ran into someone they knew there besides the one they’d come to see? In a general medical hospitalization the chances of noticing someone you know are much less likely unless you were peeking your head into each room.
The third hospitalization restricted visitors movement more, only allowing them in that one room.

Some point in the middle of my first hospitalization my doctor asked me to list the top things bothering me at the moment. One of the top items on this list was the distress my hair pulling was causing me. I later learned that this had been relayed to my Dad. He didn’t understand why I was stressed about my hair (the part about pulling it out got lost it appears). I can’t imagine how that doctor believed that it was appropriate to share this information with my Dad. I was so visibly upset upon learning this that I worry my Dad held back telling me more he might know to keep me from getting further upset. I have no idea if he was told more.
I believe him when he says that he didn’t try to get information out of the doctor and that this was shared more spontaneously. The hospital only had my permission to talk about about logistics (such as arranging affordable outpatient care) with my Dad but still information gets shared that shouldn’t once a line of communication is opened.
My Mom is banned from speaking to any mental health professional of mine, because she tries to manipulate people into giving her information.
I banned her from visiting at all during my second hospitalization and unfortunately it wasn’t very effective because they kept allowing her on until I started to scream that she wasn’t allowed there.

Family meetings seem to be encouraged, again creating the risk that something will be said that I wanted private.

My third hospitalization was the worst with regards to confidentiality. The central issue became my efforts to protect my privacy.

First they told me they were going to contact my school to let them know I was there. I strongly refused.
Anyone who’s been reading this blog regularly knows that letting my school know about my psychological issues is a touchy subject.
‘But it’s our policy’, they said. ‘We have an agreement with the local schools’
I called my lawyer and they called theirs.
After creating a huge amount of panic and stress for me they backed down realizing they had no leg to stand on.

While this was still being sorted out I noticed some student nurses were visiting the unit. I spotted a name tag. My college’s name was on it.
I fled the room. Had they seen me, had anyone recognized me?
Student nurses from my school came twice a week. No one had thought to mention this to me.
It happened too fast for me to spot any faces. Did I know any of them?
I spent the morning hiding in my room.
“Isn’t their being here putting my confidentiality at risk? I don’t want them to know I’m here. Can’t they leave?”
I go to a small school. People know each other.
No one seemed concerned.
I spoke to the apathetic Human Rights Officer.
I wasn’t allowed to ban them from the unit, but I could ban them from any activities I wanted to attend.
But I couldn’t attend the activities, I couldn’t walk down the hallway to get to the activities room without risking being seen.
The only way to prevent them from knowing I was there was to hide while they were on the unit.

When got out of the hospital I sent an anonymous email to the heads of the nursing department to let them know what had happened.

Here’s the email I sent:

“I am writing to inform you about an issue I had recently relating to the *college* nursing department. I do not believe that anyone at *college* was at fault in this problem, but I hope that by bringing this to your attention perhaps something can be done to fix it.
I am a student at *college* and I was recently a patient on the inpatient psychiatric unit at *hospital*.
My confidentiality is very important to me, as I have previously had my confidentiality broken and suffered discrimination as a result of this. I understand that not everyone will react the same way others have, but because of these problems, keeping my psychological issues separate from my education is very important to me.
One day while on the unit I spotted someone wearing an ID saying ‘*college*’. I bolted from the room to speak with a staff member and learned that a number of nursing students from *college* would be there that morning. The staff knew where I go to school, no one thought to warn me of their arrival. I didn’t want to be seen by them. The staff informed me that they couldn’t be kicked off the unit or restricted to a less central location and that my only option was to hide in my room(or the isolation room) all morning. So I was stuck doing that. The stress of hiding there and the isolation it involved were not things I needed piled on top of the reasons why I was already a patient there.
The staff I spoke with (including the human rights officer) were fairly apathetic towards this problem, citing that they have an agreement with the school to allow the students on the unit. I argued that allowing peers of mine to see that I am there is a breach of my confidentiality because them seeing me there involves receiving information that I don’t want disclosed.
I understand that the students themselves are sworn to confidentiality. (Though from my experience when people break confidentiality it is hard to prove and they end up getting away with it), Were I to run into one of these students in a social or academic situation at *college* the interaction would be colored by their knowledge, knowledge that I didn’t want them to have in the first place.
I feel that as a patient my needs, particularly my rights to privacy, should be taking priority over the educational needs of the nursing students, because there is the option for the school to find an alternate assignment for the students in this sort of situation, but I don’t have the option of being in an alternate psych ward for the morning.
I can’t imagine that I’m the first person to run into this problem. And I understand that having the students not be there when someone from their school is a patient there who objects may not be a reasonable option.
I understand that the teaching hospital is a very successful concept, but that doesn’t mean it can not be improved. The current way that it is being implemented at *hospital* is taking too casual of an attitude towards privacy. I do not know if this experience is representative of other hospitals.
At the very least, if you could help me out by giving me a list of all hospitals where *college* students are on the psychiatric units, I would appreciate it. So I can know to avoid them. Because at this point I feel that if I am in need of inpatient psych care I am unable to get it because I fear a confidentiality violation.
Thank you for taking the time to read this. ”

I now have a note behind my ID in my wallet listing 8 hospitals I can’t go to because my confidentiality would be at risk. Basically I would have to travel fairly far to get to a hospital free of my school’s nursing students. Even further if I wanted to get to a reputable hospital.

I got a couple of more sympathetic, “We’re taking this seriously” emails in reply, but basically the end result is still that I can’t go to those hospitals.

Confidentiality should not need be one of my primary worries when hospitalized, but it has to be because I have to protect myself.

Primary Care

I used to believe there was never a legitimate reason to withhold information from a primary care doctor. Now I feel that information is only to be given on a need to know basis.

In late high school, my therapist (M.S.) gave me three choices, I could go on medication, go back to DBT or go to my primary care doctor to get my cuts looked at. If I refused select one of them, she wouldn’t meet with me anymore. I resented the ultimatum, but decided to go for the primary care option. Medication and DBT would be continued disruptions to my life but a trip to the doctor could be done and over with in a day.

I didn’t have any control over making my own doctor appointments or transporting myself to the doctor. My parents don’t know about my cutting so I couldn’t tell them why I needed to go.
I invented a vague medical issue (I can’t remember what, maybe a stomach ache?) and asked to go to the doctor. Given my Mom’s hysterical tendency to overreact to physical symptoms, this was all I needed to get an appointment.

I went to the appointment and no surprise, my cuts did not need medical attention, but the therapist didn’t trust my judgment.
I thought I was done with the primary care task, but the therapist kept insisting I periodically return.
More vague medical issues were invented. My cuts were fine. I make a lot of cuts, but the depth of each individual one is nothing to worry about.
One visit, my regular doctor wasn’t in and instead I met with an overemotional doctor who grabbed my arm and made me promise not to kill myself.

When I was hospitalized for the first time it was partially related to losing my virginity. Although I know that with lesbian sex the risks are lower, I decided to ask for a STD test. The HIV test was done while I was in the hospital, but the other more general test was not.
I was 19, but my primary care doctor was still my pediatrician. Google says that up to age 21 people sometimes still see their pediatrician, but for me age 19 felt much too old. I didn’t have control over making doctors appointments yet and hadn’t been comfortable asking my parents about switching. The doctors at the hospital helped me out by writing in my discharge report, “Recommend the patient establish care with gynecologist”.

Upon release from the hospital I had an appointment with the new primary care doctor. I got my STD test (Results were fine). That was the only appointment I ever had with her.

Much later, I was trying to find a therapist. A local hospital’s psychology department said they could get me one, but first I needed a primary care doctor in their hospital. I made an appointment to see this new doctor (I will call her Doctor A). I gave a fairly lengthy psych history to her, because I needed her to help me get a therapist within her hospital. She seemed very nice and insisted she’d help me get a therapy appointment quickly.
The hospital wasn’t able to follow through with getting me a therapist. The wait list was a month long and even after the wait I wouldn’t be able to have a high enough frequency of appointments.

Another local hospital said they too could find me a therapist if I had a primary care doctor in their hospital. Again, I went to a new primary care doctor who I told more about my psychological history than my physical history. This hospital was also not able to follow through on their promise of a therapist.

I decided to switch back to Doctor A because her hospital had a more convenient location. Both hospitals are affiliated with the same prestigious medical school so I believed they were of comparable quality. Turns out the USnews rankings feel strongly otherwise, but I didn’t know this at the time.

I had a handful of appointments with Doctor A. I needed a form signed for school, the HPV vaccination, I had the flu etc.
I wasn’t pleased with how she handled my medical form for my new school. She put much too much information down about my psychological history. I felt the only appropriate information was the medication I was on (klonopin) and a small reference to minor anxiety as an explanation. I didn’t feel comfortable using her form with what had happened last time I had a school know my psychological history.
I never gave my new school the medical form. I’ve avoided the student health center. I worried they would track me down looking for it, but it never happened.

My third hospitalization was at Doctor A’s hospital. The many ways that that hospitalization was the worst I’ve had are a subject for another post. When I was discharged they insisted I make a follow-up appointment with my primary care doctor. The next available appointment was many months outward. The appointment was made and although I felt it was unnecessary I kept in in my calendar book.

After the hospitalization at Doctor A’s hospital I requested a copy of my records. I really only cared about the records from my inpatient stay, but because I was already going through the effort of making the request I also checked the box asking for my primary care records.

In my initial appointment with Doctor A I had mentioned that I am a lesbian. I was also asked if I am sexually active. I find that a hard question to answer; I explained that I only had sex once. I was asked if it had been consensual and I told her it was. At the time I didn’t think much of the question about consent, it seemed like a reasonable follow up.

In my records I was surprised to find this:
“She has had one sexual encounter with a man 1 year ago, but has not had intercourse since. She considers herself a lesbian but does not have a girlfriend and is not sexually active.”

I definitely never said anything about having sex with a man! I’ve only had sex with a woman. At the follow-up appointment I called her out on this. She was very insistent that I had told her I had sex with a man.

She heard the statements “I have had sex once” and “I am a lesbian”. I think this was likely not conscious, but I believe she was biased to assume that “sex” is a man plus a woman even though intellectually I believe she understands the alternatives. So following that she asked the question about consent, because it didn’t make sense for a lesbian to have sex with a man unless it was rape. There are of course exceptions to this, such as when a person begins identifying as a lesbian later in life. Instead of asking for clarification she assumed I was one of those exceptions and entered the incorrect information into my record.

I wasn’t pleased to learn that my doctor had an implicit bias against homosexuals. I realize there are some leaps and assumptions in here, but I think it is the most logical explanation of what happened.

I decided I was done with preventative medicine. I have chronic suicidal ideation. Although I wasn’t going to take action to kill myself then, I shouldn’t take action to keep myself alive. Basic needs such as eating and sleeping were okay, but no need for check-ups. Maybe I would come down with a horrible disease and would die without needing the effort of killing myself.

Eventually, I loosened up on my boycott of preventative medicine. I found a new primary care doctor (Doctor B), one at a clinic with a focus on the LGBT community. I told Doctor B the bare minimum of psychological history; I let her know the medications I am on, and mentioned nothing other than occasional panic attacks and ADHD. That’s all she needs to know. If she doesn’t know more, then she can’t tell more on any forms I need her to sign.

In September when I had my most recent overdose, I wanted to go to a doctor to get checked out. I couldn’t go to to Doctor B, because I don’t want her knowing about my crazy.

I waited a week to avoid the risk of being forcibly hospitalized. The more time between me and the overdose the less of a case they would have that I was an immediate danger to myself.

Doctor A was a resident and no longer works in the same hospital, but the hospital assigned me a new primary care doctor who I have never met. As far as Doctor A’s hospital is concerned I still have a primary care doctor there. I just haven’t been to an appointment for awhile. This gave me access to their walk-in clinic.
I met with a doctor who insisted I needed an emergency appointment with their psych department. Because it was after hours and I wasn’t an immediate risk she said she’d call tomorrow with a referral for an urgent appointment. I didn’t argue because I didn’t want to say anything that might force me to stay there. But it was frustrating, because I’d come for the physical issues only.
Everything was fine physically in her tests besides my reported GI symptoms (they eventually faded away).
I dutifully followed up with all of the hoops to get the urgent appointment. I was without therapy so I figured it couldn’t hurt. The appointment never materialized. No surprise there.
I would probably go back there if I needed other medical attention related to my psychological issues. I don’t like them but they’re capable of running a blood test or giving an X-ray. Doctor B is still my doctor for yearly appointments and anything else .

I don’t know which doctor is my real primary care doctor. Neither has the full story. Each has their specialized purpose. It works, so I’ll keep it like this.

Hidden Self-Injury Tools

I should preface this post by mentioning that I don’t feel self-injury is inherently bad, it can be helpful so I find efforts of others to prevent me from doing it frustrating. You might with to read my other post about self injury first.

When I began self-injuring I also began hiding tools to accomplish it. This way I would always have access should I feel the need. Safety pins were hidden in most articles of my clothing. I had a pencil case filled with razor blades and bloody gauze.

In my first hospitalization I secretly brought in a safety pin. A small item I impulsively decided to hide when I realized what was happening. Turned out this was unnecessary.

They did an awful job of searching my things. When my searched bag was handed to me the first thing I did was open a compartment and pull out a brand new razor blade. My roommate had packed the bag and handed it to my parents. The razor blade had been left in the bag previously.

To make it seem I was healthier than I was I promptly handed the razor to the mental health worker who had given me the bag. My manipulation was wasted. This interaction was never entered into my records and I don’t believe he told anyone because it was him who had missed the blade in the search.
Upon later inspection I realized all of my buttons (the kind with little sayings on them and pins on the back) had been left on my bag. I had accumulated a very large assortment of sharp items.

Initially I had decided I would respect the rules of the hospital and not self injure while there, but after a series of frustrations with the hospital I decided there was no reason for that.
I scratched up my arm a bit one day. Hardly any damage, it’s tough to do much with a pin. I didn’t hide it but also didn’t show it off. It was noticed and I handed over some of the pins.
A threat was made, “Is this everything? We can search all your things again if you want”
“Search if you want too”, I said
I made good eye contact. They bought my pretend confidence.
Later, feeling manipulative again I walked to the nurses station with a pin and said, “Here, I found this in my room”
The nurse made a big fuss about how proud of me she was, not knowing I still had my original safety pin. This was entered in my notes.
I scratched a bit at times following and was not caught.

In the weeks preceding my second hospitalization I knew I was feeling unstable. I had destructive plans running through my head with no specific time set.
In the event that I needed to be hospitalized I decided I should ensure I would have materials to self-injure with in the hospital. I hid razor blades in many items that are always on my person.
Sure enough when I was rushed to the ER I had a nice assortment of sharp new blades. None were found during the search. No one expects the lengths I went to conceal them.
I had quite the stash of blades. I cut a lot during that hospitalization and was not caught.
The closest I came was when I was cutting and punching a wall in the shower. The wall punching made more noise than I anticipated and nurses came barging into the bathroom. Fortunately through feigned modesty and angling my body in ways to hide the cuts, I was able to get enough privacy to get clothing on without being caught. I admitted to the wall punching but the cutting and razor blade were not discovered.

On the day I was being discharged, minutes before I left, I passed a clean new blade to a friend I’d met there. She’d mentioned wanting to cut and being friendly I decided to help her out. It’s a fuzzy moral area for me. It’s one thing for me to cut. I know I won’t go too deep, but other people are uncontrolled variables.
Later I heard she cut up her arm pretty badly and was discovered. She wouldn’t give up my name though when the psychiatrist was demanding the information from her.

At my third hospitalization I also arrived well armed with razor blades. The ER room I sat in had a spare unused blood draw kit. I was bored with making balloons out of latex gloves so I took it and hid it for later.
An accomplishment I shouldn’t be proud of but am is that during this hospitalization I cut in the shower while on one to one security. Meaning, I had a person who’s sole job was to babysit me and make sure I didn’t do these sorts of things and still managed to not get caught.
I tried to draw blood with the blood kit. I thought it would be neat to try and bleed until I passed out. I was doing it wrong. It didn’t work. I tried calling a friend with a history of heroin abuse (the same one who I gave the blade to the previous hospitalization) I thought maybe she would have advice regarding sticking a needle in an arm. She didn’t answer the phone.
I later learned those kits are set up to only work when the blood tube is attached. I didn’t have any tubes.

I was trying to express to the doctors how not okay I was. I gave them useless the blood kit and some of the razors that had become rusty from the shower. I wanted them to know what I’d been up to. It didn’t work. I was discharged the next day despite still being very suicidal. First thing I did upon arriving home was OD on a bunch of pills.

Having so many sharp things hidden in my possession makes airplane travel very stressful. I’m fine with sneaking sharps into a hospital, but not fine with sneaking them onto a plane. The consequences of being caught in the hospital are very low, but being caught with it at an airport is serious business. Before a trip I have to carefully comb through every single possible hiding spot and remove the blades. There are so many I don’t remember them all. I’m incredibly anxious while going through security. I worry if i missed one.
To make matters worse I nearly always have my bag searched additionally. I travel with at least three cameras on the average trip, along with assorted other electronic devices. No matter how I pack these items, my bag appears suspicious under X-ray.
Fortunately it appears I’ve never accidentally left a razor blade behind in my bag, but it continues to be a source of worry every time.

If you are someone who works at a hospital I hope you don’t take out of this post that security needs to be drastically upped for everyone. I think a better message is that if a person wants to do something badly enough they will find a way to do it. Also it is important to note, that most of the in hospital self injury I did was directly following attempts to reach out to staff for help verbally that were unsuccessful.

Therapy Update

I suppose I’m due for an update post about what’s going on with me and therapy. I did you leave all hanging with my last post about my stolen therapy appointment.

I went to my next appointment and felt even more confused about the situation.
See, the explanation in my previous post was based on information my Dad relayed to me after speaking with the therapist. My Dad relayed the explanation to me with a lot of confidence and so I had a lot of confidence in the explanation.
The therapist didn’t seem confident that he knew what happened. He said ‘I may have double booked’. But he wasn’t sure.

I was (am) so uncomfortable about the idea of talking to him about how I felt that I quickly pushed the subject away and acted like I was okay.
But I’m not okay about it.

New therapy begins with an emotional distance. If it goes well that distance can decrease a bit. Unfortunately this situation built a tiny wall. The wall is big enough to see over, but it would take some effort to get past.
In a therapy where I have a stronger foundation I’d have reason to jump over the wall. Here, I don’t know if it is worth the effort. I can talk superficially across the wall and have gotten stuck with that.

Every appointment I go to I get anxious wondering if it will really happen. I feel relieved when it does, but don’t trust him to be there next time. How can I? He doesn’t even know what happened last time, so how can he prevent it?

He doesn’t know I’m being more closed off because I’m still upset over that first appointment. He has no way of knowing, he’s never seen me another way.

He seems basically nice. His office is fun. A lot of action figures around. He works mostly with children. The location is great, a short walk. My insurance is covering the appointments really well. I hardly pay a thing.
So I’ve continued going.

I’m not going because I get an actual benefit out of the therapy, I’m going because I’m terrified of what I will do if I have a freak out and don’t have anyone.

He has board games. I asked to play chess. He thought I was joking. I asked again. We played chess. He beat me in 4 moves. That’s inexcusable for me. My typical opening explicitly protects against that. I’d decided to test a modified set of opening moves with him and I’d botched it. We played again. The game was longer, but ultimately he won.

I’d had a fantasy for awhile about playing chess in therapy. Somehow I envisioned the multitasking would loosen my verbal inhibition. It didn’t work like that. I was too busy thinking about my next move to say any words other than “check”.

We stopped after the second game. It wasn’t because I’d lost twice. I lose at chess all the time. My brother plays competitively and has a respectable USCF rating. We learned the same day, but he’s been beating me all my life.
I stopped because I realized I just wasted half the session playing chess.
I appreciate that he didn’t let me win. I just hope he doesn’t think I stopped because I lost. I may have to play again just to prove that point.

I made a mistake that further built up the wall between us. When I learned about the book being written by the therapist who got me kicked out of school
 I was upset. I called S.M. (the therapist who I’ve liked best, but has an office far away from me). I got everything out in the phone call.

I feel like I cheated on my current therapist with that. I went to see him the next day. I didn’t tell him about the phone call. I felt better, but too delicate to talk about the previous night. I haven’t talked to him while upset yet. I have no way of knowing if he will be helpful. I couldn’t risk getting upset again during finals season.
Later I mentioned the book, but I was over it by then. I was detached. My pain didn’t come through, only my aggression.

I thought once the semester ended I’d switch to twice a week therapy. Maybe that would help. The combination of him taking excessive amounts of vacation days and me being busy even during “vacation” led to me never asking him about it.

I like that he talks out his thoughts about me frequently. I hate when therapists sit quietly only to make a pronouncement weeks later based on misunderstandings. When they make more frequent comments tiny misunderstandings don’t get blown out of proportion the same way.
His facial expressions are also also easier to read which makes him feel more authentic. I can tell if I’ve thrown him off and he needs a second to think.

Some of his reactions have been strange though. I hate when therapists make a big fuss over my self injury. When I mentioned it to him he ignored it. The reaction was so lacking, I thought maybe he’d not heard me. He had, he’s just never responded to it. On one level this is great, but on another it makes me uneasy, because I don’t know what it means.

The largest problem is that he wants to talk about my family constantly. I realize choosing to go to a psychoanalyst and then complaining about talking about my mother seems strange. I also know it is weird for me to talk about how wonderful object relations theory is in the same session I tell him to back off about my family, but he goes too far.
Yes, things that happened in my early family life no doubt have a huge impact on my problems. My problems, however are happening today. He knows more about my family than he knows about me.
I’m fine talking about my family if the topic occurs organically.
Whenever there is a pause he drags the subject back to my family. I have many therapy pauses. I need some of my pauses. Given time some of my pauses will lead to me talking about harder things. When a therapist constantly directs the conversation, this helps me keep it superficial.

I talked about my family ad nausium in my high school therapy. I don’t live with them now. I have distance. Yes, I am still messed up from their genes and environment interaction, but what about how I am suffering here and now? I don’t want to talk about every high school fight I ever had. It’s over. I still hate my mom, but rehashing the same stories about her to yet another therapist is exasperating.

He asks me to speculate too much about my family. “What would happen if you told your Mom about your youtube?” The real answer is I don’t know. I don’t want to find out. But if I take the bait and make guesses I feel awful. I don’t want him basing his information about my family on speculations. Individual anecdotes are far better. Those anecdotes need to come up organically, they can’t be forced.

The speculation is the worst part. I hate feeling trapped in something I guessed. It feels awful when he throws back words at me that I used in this guess work. His views of my family are so two dimensional and I blame how his speculative questions elicit generalities rather than specifics.

I’m really upset that he let me go on and on about how I think my brother has Asperger’s. I have a mound of evidence to support this, but I hate talking about guesses. He’s not been officially diagnosed. It makes me feel so guilty, to be saying these things when maybe I’m wrong. My brother is awesome. I hate that I was going on and on about his worst traits. I was upset over a recent disagreement and took it out like that.
It can easily become a ‘trash talk my family’ session instead of therapy.

I decided to look up my diagnosis code on his bill. I thought, ‘If he put down borderline as the diagnosis, I have an excuse to leave.’ He put Mood Disorder NOS. It’s hard to get a more benign diagnosis than that. Not a good excuse to leave.

I might switch to once a month. Then I’d not be alone, but wouldn’t have to make the time commitment. This next semester was supposed to be less busy than the prior, but it looks like I’ve made too many plans again. No time to waste on ineffective therapy.

Research Participant

Being crazy can be profitable.
During the past two years I’ve participated in around 20 paid psychology research studies.

I have such a hard time talking in therapy, but research studies are easy. I don’t have to worry about their reactions to things I say. I’ll probably never see them again.

It might seem strange to do because I am so touchy about therapy confidentiality. I’ve never been burned with research study confidentiality. In my head I feel they take it more seriously, but that may just be a rationalization.

I never do treatment studies. I’m not comfortable with that. So no taking experimental drugs or going to excessively rigid short term therapy for me. Mostly I fill out surveys and do short activities or tests.

It’s not something for everyone. A lot of tough issues get brought up. The same detached, methodical approach that helps me here might be very upsetting for others.

It’s educational and helps me out financially. I get a sense of what studies are being done and observe their methodology.

Sometimes I spot flaws with the ways data is gathered. Tiny things that will never make it into the final paper but might impact the results. I make mental notes to avoid those in the studies my future self will conduct.

You’d be amazed at how many surveys with questions about sex are written in a heteronormative fashion.
I realize it’s not so simple to fix an empirically validated measure as changing one question. Whole new testing would need to be done to make sure the change doesn’t hurt its validity.

It’s also not always immediately clear how best to fix a question to make it more inclusive.

For example some social anxiety measures ask specifically about anxiety around the opposite sex.
For homosexuals the question can’t just be changed to “same sex”. The question isn’t asking about only people whom you might potentially date. It’s asking about the entire gender.
The type of interactions lesbian women have with straight women (the majority of women) can’t properly be compared to the interactions straight women have with straight men (the majority of men).
Changing the wording to “same sex” (as some research assistants have told me to do) changes the question’s meaning. And what about bisexuals? Should it just be changed to “everyone” for them?

It’s not so simple either to change the question to only address specific people who you feel sexual attraction to. Again this is a new question, because the original discussed an entire gender. A whole separate research study would need to be conducted to validate these changes.

Another problem is with risky behavior measures. Many ask about birth control. Yes, I have had sex without using a form of birth control, but I highly doubt either of us will get pregnant seeing as no sperm were involved.

It’s clear a number of commonly used measures need to be updated. I understand that people are opting to work with what’s available, but they also need to realize this might impact their results.
Lesbians who are less conscientious than I might just answer the questions (I mention the problem to the research assistant) without thinking about the context the questions are asked in.
These types of questions are not a rare occurrence.

On average my interactions with researchers and research assistants have been quite positive. I wouldn’t describe it as warm and fuzzy. It’s a business arrangement. We’re both clear on the expectations and everything works out well.

However, one particular researcher got under my skin. He was a lisenced psychologist, there to go through a structured clinical interview with me to determine if I qualified for their study. As we went through the questions he’d throw out unsolicited bits of advice and comments. Comments like how I shouldn’t self-injure, etc. Completely inappropriate.
I continued through the questions, answering honestly, but it would have been all too easy for me close off. If it had been therapy I would have stopped talking and stared at the wall. I kept going. The things I do to preserve the quality of data.
I considered dropping out of the study, but the pay was good and I only had to have tiny interactions with him after the first day, so I stuck with it. Everyone else in the study was great.

Often when people outside of the field think of psychology studies they think of studies using horrible unethical forms of deception. There’s so much regulation with IRBs that the risk of this is low. In the worst and only deception I’ve encountered in a study, I was told I was playing a computer game against a real person, but it was really a computer. Pretty harmless stuff, but they were still required to tell me it in the debriefing.

I’m very dodgy with telling therapists about my involvement in research. I participated in several research studies over the summer while I was in therapy with S.M. I went to therapy 3 times a week. In therapy 3 times a week, concealing activities becomes harder. I hid it up until the last week when I casually mentioned it, trying to be nonchalant while fighting off a grin. He handled it very well. I was worried he’d wonder why I had trouble talking to him, but could talk to researchers. It ended up being a non-issue.

Participating in these studies is something I’ve enjoyed, but I need to stop or at least cut back on it. I can’t have my professional life merge with my crazy one. I’m getting to know more local people in my field. The risk of encountering someone I know or who knows someone I know is rising.
I have one last appointment to participate in a study. The office is it in is one floor above where a number of people I know work. I did a Facebook search of the research assistant and sure enough we have a mutual friend. I’m going to go through with this study because I think the subject is intriguing, but it’s a warning sign that I need to cut back.
I don’t want to say for sure this is the last one, but I will definitely be doing fewer.

Adderall and Ritalin

As you can tell from my post about food, I am very particular about what goes into my body.

It was an ordeal for my parents to get me to take any kind of medicine as a child. Any occasion where I took medicine was a rarity. I had no understanding of the cause and effect. The idea that something I ingest would alter how I felt (possibly in a positive way) was hard for me to understand.

My freshman year of high school my parents decided they wanted me to begin taking Adderall. I refused initially. I wasn’t worried about potential risks of the drug. Taking a doctor prescribed drug as directed seemed harmless. I knew cognitively about the idea of side effects, but had no personal experience and therefore was not concerned. My reason for objecting was taste.
I’ve never learned to swallow pills. I have to place them in food. The bitter taste is inescapable.
My parents offered to pay me to take the Adderall. I forget how much. It was a one time payment in exchange for taking the drug indefinitely. I’m not much of negotiator, I probably could have gotten a better deal, but I accepted it.

I began the Adderall.
I have no memory of ever being told by a doctor what side effects to look our for. My parents were told, but I wasn’t.
So when I stopped needing to eat or sleep much I didn’t connect this to the new drug. I just thought I didn’t need these things anymore.

I’d sneak over to the computer at night and play games online. Go to bed at 3 am wake up at 7:30 am? No problem!
I loved my alone time at night. I had free reign of the house, provided I was quiet.
Why would I tell my parents? They’d just get mad at me for sneaking out of bed.

I didn’t need lunch anymore. I’d save my lunch money for various odds and ends.
Couldn’t tell my parents that either, they’d get mad.

Classes were boring. I’d look around the room going pondering the different ways I could kill myself before the class ended. Could I jump out the window? Hang myself with the flagpole? It was half serious and half a game.

I exploded at a friend at school. She asked where my boyfriend and I were going on our date. I accused her of trying to follow us. I never repaired that friendship following this incident.

I started self-injury during this time. Was it something that was bound to happen even without the Adderall? I have no way of knowing.

Based on how long standing my problems have been and my family history I believe I’d still have had difficulties without ever taking Adderall. I think they may have just been accelerated.

During this time I feel something in me broke. I’ve spent the rest of my life trying to fix it, but I never get back to where I was. I have times when I think I am fixed, but a little bump makes me fall apart again.

My fabulous, amazing godfather commented that I looked drugged. And he would know, what with all the time in the 80s he spent being punk rocker, hanging around the east village.

There were a lot of dramatic, loud arguments with my Mom. One resulted in my running into a snow storm in only a t-shirt and jeans. I figured I’d freeze myself to death in the snow. I hid in the backyard, then I got cold, so I decided to live.

I re-entered my home. My dad was on the phone with a local psych unit. Had I stayed outside a few more minutes I’d have been dragged to the hospital.
This was my first threat of psych hospitalization. It began a series of nightmares I had for years about being forcibly hospitalized. (This is a topic for another post)

I wonder sometimes how things might be different had I been hospitalized that day. If some type of intervention had been made earlier would things be less severe today? My parents were and still are for the most part clueless about how bad my problems are. It was a year until I began regular therapy and it wasn’t due to a specific mental health diagnosis except for a little about my ADD. It was primarily for dealing with conflict between my mom and I.

After the snow storm incident, my parents finally realized the Adderall was not the best idea for me and I was taken off it.

Life improved after quitting the Adderall, but never quite to where it was before. The self injury tapered off, to the point where I thought I was done with it forever. There was almost a year where things felt close to normal. A rough patch during my junior year brought everything back. It was much easier to fall apart the second time.

You’d think this would have scared me away from stimulants for good, wouldn’t you?
It did for awhile. It scared me away from all drugs.

Out of desperation, my freshman year of college, I tried some other psych drugs for my anxiety and depression. (This is a topic for another post) This loosened up my fear somewhat. I’m still very distrustful of drugs, but if desperate enough I’m willing to look into the option, occasionally.

When I transfered schools I was terrified about how I would do academically.

During my second hospitalization I asked my doctor if he could prescribe an ADD medication besides Adderall. I thought it would be a good idea to try it while there so if I had a bad reaction I would be in a safe place.
The doctor said no. He had a theory that I was bipolar type 3 (didn’t seem to care that this diagnosis doesn’t exist) and thought it would make me manic.
In art therapy I spaced out while the directions were being explained. I dedicated my piece of colorful scribbles to him and called it “My therapist won’t give me ADD drugs, so I spaced out during the directions”. In typical art therapy fashion the facilitators talked about how even though I’d not heard the directions, my scribbles somehow related to the assigned topic.

During my 3rd hospitalization I asked again. They put me on Ritalin. Was the only helpful thing to come out of that hospitalization. Originally they had me take it every day. I wasn’t comfortable with that.
Now I take Ritalin just on days I want to. I like being able to compare how I feel on the drug versus off it. It has worked out very well.

Everything in my brain organizes itself better. I don’t stare at a blank screen for hours trying to start a paper.

It’s not perfect. I’ve had horrible mood swings when it wears off. I learned this happens when I skip a meal. I make sure to eat (even if I’m not hungry) and things are fine.

Careful self-monitoring is important.

Ritalin is shorter acting than Adderall. I find this helpful. I can’t go for weeks accidentally depriving myself of sleep and food like I did on Adderall.

Part of my Adderall problem was that I wasn’t informed about anything. I was 14. I was young, but old enough that I should have had a more active role in my health decisions. Someone should have let me know that my body still needed food and sleep even if it was saying otherwise.

It won’t go away

The 3 year anniversary of when I was kicked out of school is a bit over a month away.
It’s been so much, time but it is still an incredibly touchy subject.

I can speak about suicide, self-injury, hair pulling etc in a detached, emotionless voice. When talking about my forced medical leave I struggle to get out a sentence at a time without being interrupted by crying. When upset, my verbal ability plummets.

I spoke with a researcher who is studying people who have been forced out of their school or asked to leave due to mental health issues. I’m glad someone is working to get awareness for the issue. I don’t feel I did a good job of communicating the long term difficulties I have as a result of the forced leave, but at least I did something.

School is the most important thing to me. As you can see from this blog’s name my major is a important part of my identity. Before this mess I was a different major. I defined myself by that major too. I’ve lost a part of who I am. That old identity is tainted by these happenings. I try to push that old part of my identity away and people keep throwing it back at me.

I feel so isolated about it. There are support groups for so many things. Except this one thing I could really use a support group for. I need not only someone in the same situation, but someone who also has long term problems from it.

There’s a message board I’ve been going to for support of a more general nature for nearly 5 years. Using a message board for support is tough. I spend so much time trying to give background information that I don’t feel the ability to vent freely that I really need. What I really need is a best friend and I use the Internet as a poor substitute. My most recent thread, several weeks ago, related to ways this still impacts my life. I felt very misunderstood. Feeling misunderstood feels like an attack. I tried to put on a strong front in my replies, while alternating between tearful keystrokes and slicing open my leg. I wanted to clarify and understand how I can better explain myself. I am extremely touchy about this issue.
I don’t need people to tell me to move on from it. I know I’ve been hanging onto this a long amount of time. It’s easy to tell a person to get over it and not understand why the issue is still hanging around.

Let’s look at this through Compromise Formation Theory which admittedly I don’t know a ton about, but the little I know leads me to feel it is particularly applicable here. I wouldn’t be doing something if it didn’t provide some benefit.

The negative part of this compromise is that I am still hanging onto this thing that happened nearly 3 years ago and have incredible emotional sensitivity to it.

On the other hand, hanging on to this issue is the only way I know how to feel some security. Letting it go feels like opening myself up to the possibility of it happening again. I would be too vulnerable.

My hyper-vigilance is both damaging and protective.

Periodically I do a very stupid thing and google the therapist who got me kicked out.
He’s developing quite the web presence or so he appears to think.
Up until recently, he thought it was a good idea, and not at all reminiscent of tacky 1990s websites, to include a hit counter on his blog.
I’ve taken a lot of pleasure in knowing how small his web audience is.
Yes, it’s petty, but it helps me.

In my more recent googling I learned he is publishing a book, set to come out this year.
It has a cutesy name, the same as his blog, and is about taking a trendy psychology concept and adapting it for
a young urbanite audience.
A blog I can deal with, a book is a different issue. It has the ability to reach a large audience. The thought of all these people reading his book and possibly thinking he is a great guy upsets me.
I wish I were brave enough to publicly tell everything, write my own book, so people could know the rest of the story about him.

I have these horrible images in my head of spotting his book in one of my professor’s offices. I need to keep my old world separate from my new one. A book on the wrong bookshelf would signify an invasion. The fear is almost as bad as if it were to really happen.

In reaction to this I did the only thing I could. I used my Internet knowledge for a tiny piece of vengeance, while not violating any laws.
I reported his domains to ICANN. He had blatantly false Whois info (I highly doubt his phone number is (999) 999-9999).
I got one of his domains suspended for a few days.
Again, petty, I know, but it put a smile on my face for a little bit.

I wonder if he knows I did it. Probably not.

I’m sure I’m much less on his mind than he is on mine. This is part of the problem. It hurts to see him achieving any level of success, when I still have a day to day struggle over what he did.

Within the past week, a blog post of his was featured on the front page of a highly trafficked pop-psychology website. I wonder how many people I know read his article, having no clue about our association.

I want to scream out to the world ‘Hey look what he did!’, but I can’t because what he did left me too scared.