Tag Archives: confidentiality

How fear of being un-masked dominates my thoughts: Hiding mental illness

I talked in the last post about impostor syndrome. I wanted to elaborate upon this a bit by showing how my thought process goes about participating in class discussions and how my fear of having my health health status discovered dominates my decision processes. This isn’t any one class but more an example of what my experiences in classes tend to be like.

Thought: I have to participate at least once each class. Ideally more, because participation is a large part of the grade.

[Professor asks question]

Thought: I have thought I would like to contribute to this, but the knowledge I have is based on readings I have investigated in depth in attempts to understand myself. Although I can respond to this question and keep the content intellectual and not personal, I worry that someone might wonder why I know so much about a niche area like this. I have to make sure the knowledge I convey all can plausibly be expected of me given my current training level. I know that for one question response it might not mean a lot but if they put together other pieces of information with my response they might start to suspect something. I’ll skip this one.

[Other student makes a comment]

Thought: I wish I could talk about the thing I am thinking of and add to the conversation, but it is not worth the risk.

[Professor discusses a diagnosis in the class which is one I have]

Though: Keep your face neutral, keep your face neutral. If a student says something stigmatizing and offensive keep your face neutral. If someone comments about frustrations relating to difficulty treating this population, keep your face neutral. Crap. I think I may have made a slight disgust face. Did anyone see? Does the professor suspect I have a personal relation with this subject matter?

[Professor asks a question related to a definition from the reading]

Thought: Good I can answer this! It falls into knowledge I am expected to know.

[I provide answer]

[I am asked to discuss my current research interests and directions]

Thought: I am doing me-search. I am very proud of the direction I am investigating, but is it too novel? Novel is good, but what if they wonder where did I get the inspiration for these novel ideas? I don’t have patients yet so I can’t claim it was inspired from working with them. What if people realize that the reason I am able to piece this research together in a unique way it is because I am using some of my experience (combined with extensive literature reviews) as a source of inspiration. I can down play the novel parts and make it look more iterative than it is but that hurts me by hiding something I can being successful at. But I need to blend in to avoid arousing suspicions.

[I discuss research]

Thought: Did I say too much? Are they getting suspicious? I should make sure I stop talking to avoid further damage.

[Class continues]

Thought: I need to watch my body language. Stop fidgeting. They’ll realize you’re anxious.

—-

Logically I know that these worried fall under the Spotlight effect, but I consider being found out to be such a horrifically terrible event that even if it is low probability I need to do all I can to protect myself.

An adventure to Second-Closest-City and Therapist #26

Last week S.M. contacted me with a name of a potential therapist. The one we’d spoken about before for the consultation wasn’t available. I googled this person and was very uncomfortable about meeting with her because she’s a member of a small organization that a large number of people I work with are also part of. The connection to my work was way too close.
I articulated this to S.M. and he was insistent that I needed compromise somewhere with my confidentiality concerns. He wants me to meet with someone even if I am worried about their association with my work and then work through those concerns in the therapy. There’s just no way I could feel comfortable enough to even begin therapy with someone so closely associated.

I believe I made the right decision here and feel further reinforced with this by the fact that at my work this week, the organization that that therapist is a part of came up in a meeting. We are inviting this group to an event in the near future. The organization already contains 1 past therapist from several years ago before I began this job. Had I agreed to meet with this new therapist I might have been dodging 2 past therapists at the same event. Hopefully that one therapist won’t attend this event.

S.M. told me that he’d run out of resources and that he would call this therapist if I wanted to meet with her, but otherwise I needed to find a therapist on my own.
I feel horrible. I feel guilty for bothering him so many times about referrals. He’s really gone above and beyond with finding me therapists in the past so it’s not fair to feel angry at him. But I am a bit angry. I was holding myself together with the hope that he’d find me a therapist and it fell apart.
Part of me wanted to call him apologizing for bothering him so much, but I didn’t because I realized the apology would be a little passive aggressive.

I found one last local place to try to call. They didn’t have availability until January. I can’t wait that long. I had a panic attack while on the phone. I was such a mess, that the secretary put me on hold, saying that she’d try to find someone I could talk to right then on the phone. At some point the call was dropped. I tried calling back, but they had closed for the day.

Per the suggestion of some folks here, I decided to expand my search radius. I discovered that Second-Closest-City is easier to get to than I’d realized. It’s actually easier and faster to get to this further away city than to a lot of the suburbs surrounding my city. This city is far enough away that people are not all affiliated with where I work.

I made a lot of phone calls. Nothing was working. I can’t count how many panic attacks I had. I skipped out on a lot of obligations, because I was too upset to leave my apartment.

I was working on my next suicide method and kept calling my Dad crying. He took over the search for me. I hate having my Dad do these things for me. He’s very busy and I am really trying to pretend to be an adult. But I was falling apart trying to manage it myself.

My Dad found someone for me to meet with who was able to see me a few days from then.

On the day of the appointment I traveled to Second-Closest-City. I’ve traveled through Second-Closest-City many times, but I can only think of one time when I was maybe 12 that I actually visited it.
I was very prepared for my trip. I put together a whole packet of maps and train schedules. I decided I would walk, but spent 20 minutes getting lost and progressively more anxious. It’s scary coming to a new City and not even knowing where the main streets are. I asked a stranger if she knew where I could get a cab and she gave me the number of a cab company.
I waited for 10 minutes, no cab arrived. The time of my appointment was rapidly approaching, and I was worried about waiting for a cab that might not ever show up. I backtracked to a more populated part I’d walked through earlier and found a cab.

I really don’t like taking cabs. It goes against the whole don’t get in a car with strangers idea. I know a number of people who’ve been held up by cab drivers and some who cab drivers attempted to rape. I’m a very tiny person, I wouldn’t be able to do much to protect myself.
Also in a strange city sometimes it can be hard to distinguish legitimate cabs from illegitimate ones. This one was particularly shady, but I was desperate. It had a meter which added some legitimacy to it, but it was very run down and the driver gave me the creeps.
I safely made it to the building where the therapist is located. I had traveled 2 hours from the door of my apartment to the door of his office to discover that he has a buzzer at his door.

He directed me to a waiting room, which wasn’t really a waiting room. It’s clearly a room he usually uses for group therapy sessions. The chairs were all arranged in a circle. At first I thought he was going to conduct the individual session in there! There would have been a lot of empty chairs available for the empty chair technique.
The actual office was more typical, although it was meticulously organized. My first impression of him is that he dresses more like a lawyer than a therapist.

He commented on my outfit and asked if I was still dressed for Halloween. I let him know I dress like this year round. A tactless early comment, but I let it slide.

The first session went well enough that I returned again for a second appointment.

The second appointment went less well. My trip to Second-Closest-City was nice. I conveniently was able to take the same train as a friend who commutes daily to Second-Closest-City. This friend is someone who doesn’t know any specifics about my crazy, but I am comfortable enough with that I shared my reason for going to Second-Closest-City with him. I have a lot of trouble justifying social interaction in my schedule. If nothing else this trip can force me to communicate with another human for a bit.
My friend and I shared a cab, because the weather was bad and he was traveling in the same direction.

I arrived at the office with 3 minutes to spare. A big change from my usual 20 minutes early, where I avoid going into the office until at least 10 minutes of.

He was dressed less like a lawyer this time, but I have a serious comment for you folks: Do not wear brown shoes with a black suit. Fashion disasters make me sad.

I brought my collection of neuropsychological testing to the appointment. The therapist had seemed a little uncomfortable about writing my Ritalin prescription and asked if it could wait until this 2nd session. I figured I should bring the testing so he’d know I wasn’t inventing the ADHD diagnosis myself. I’m really worried that my decision to go so far away might be misinterpreted as something drug seeking.
I’ve given many of my therapists copies of my testing. Some are more interested in others. Based on his questioning from the first appointment, (He asked a lot of neurological and general medical history type questions) I thought he’d want to see them.
I don’t have a good way to make copies. I could theoretically do it at school or work, but I don’t feel comfortable copying my personal private information there. So I brought the originals and asked if he was able to make copies.

He said he could make copies there and proceeded to do so. For the next 15 minutes. The copier was misbehaving. He unstapled and restapled all my reports. Papers were put everywhere. I have to check through all my reports now to make sure no pages or entire reports are missing.

It felt very disrespectful of my time. Yes the therapy session is only scheduled for 50 minutes, but I have to carve out 5 hours in my day when including travel time. If I’m waking up at 5:30 in the morning to begin my day so I can fit this in, then I’d like to get the full 50 minutes.

I get that he might want to avoid having tasks for patients outside of the billable hour, but despite his similarities in fashion choices to a lawyer, therapists billable hours don’t usually work the same way. Their fee should partially factor in doing some tasks outside of the session. This is why the hours are 50 minutes rather than 60. Every other therapist who I’ve given reports to has made copies and given the originals back to me the next session, rather that using session time.
It’s possible that he just didn’t realize how much trouble he’d have with the printer, so it took longer than expected. But I found a similar trend in the 5+ minutes spent discussing billing. He mentioned that I’d not brought a check the first session. I hadn’t realized he wanted me to. I thought he was going to bill my Dad. I asked if he could just send my Dad the bill. He wasn’t very into this idea. he really wanted to sort it out right there.
It turns out he takes credit card. I paid with my American express card. American express has a reputation for charging a lot in fees to vendors. I hope he got charged a lot in fees for being too lazy to send my Dad a bill. I get that maybe a lot of patients don’t pay bills promptly, but my Dad is very reliable about these things. I’m not sure if my credit limit can handle getting too many of these charges. I usually just use it to buy food.

It makes me really anxious to see the sticker price of sessions. When I submit it to my insurance company for reimbursement the cost will go down to 15-20 dollars per session, but to see $500 for the two sessions on my receipt makes my heart rate speed up.

This left less than 30 minutes of therapy time.
We had a very uncomfortable interaction where he asked me if I wanted him to help me. He wanted me to say “I want you to help me” rather than me just answering his question with a “Yes”. I didn’t cooperate.
This and a couple of things made him feel more like a bad “self help guru” than a psychiatrist. He listed the 5 things he felt were important in a psychotherapy session and the 3 types of communication he believes exist. It felt trite and cheap and tacky.

The session was very directed towards talking about my childhood. I certainly do believe that my childhood had a role in the types of problems I have today, but he doesn’t even know yet what most of my problems today are. It’s too easy for this type of therapy to turn into time where I just say horrible things about my parents. And my parents (especially my Mom) definitely messed up in some places, but they were well intentioned. I did not appreciate his efforts to make me express anger about my Dad for a situation where my Dad really had no good options. He’s paying the bill! and basically is a good guy aside from his inability to be emotionally supportive.
I mentioned that I am not going home on Thanksgiving and the therapist reacted much too enthusiastically about this. He hardly knows my situation and reacted as if I was cutting ties from an abusive family situation. My family is dysfunctional in many ways, but not abusive. My reasons for staying here are more academic than emotional.

I much prefer information about growing up to come out organically in relation to information I share about the present. I am suffering here in the present. Yes the past influences that, but the present matters too. Dwelling on every detail of my childhood is not conducive to changing how to feel today. Really, it just makes me more miserable.
Is it unfair for me to seek out a psychodynamic therapist and criticize him for wanting to talk about my childhood too much? I don’t think so. I think a therapy can be dynamically informed while having a present focus.

I mentioned how I’m not fond of the pure free association type of therapy and I prefer when it’s more interactive. He said that he agreed and said that he’d once been in therapy with a classical Freudian-type and had hated that style. I am kind of uncomfortable with that self-disclosure, even though I realize it’s very typical for analytically oriented therapists to have had their own therapy at some point. It felt like over sharing.

When working on the billing, he asked what ICD code I wanted. I’ve been asked in the past what diagnosis others have used for the bill, because they want to be sure I get reimbursed, but never flat out asked which code I wanted. I opted for Major depression, recurrent, moderate, because I’ve had that used a lot in the past.

I’ve been trying to do work on the train, so I don’t feel the time is wasted, but unfortunately I’ve been so tired, that I’ve not been very productive. Maybe as it becomes more routine it will be easier.

I’ve been having a lot of reactions to the idea of going to Second-Closest-City for therapy. When I was calling places looking for a therapist, they’d ask where I coming from and I’d tell them and as soon as they wondered why I’d come so far, I’d start crying. I’d hardly be able to speak.
I feels like it’s some kind of punishment for being so crazy. I’m so messed up I can’t even find a therapist in a city filled with therapists. 3 of my former therapists are within a 5 block radius of my home.
I’m mostly keeping these trips private, people would think it’d strange for me to go to this Second-Closest-City for a couple of hours only. I feel like I’m going on these secret adventures that I can’t tell anyone about.

Some of my professors commute from Second-Closest-City to my city. I have a slight fear that because I am taking such an early train that I might run into them at the train station in Second-Closest-City. I’m not sure how I would explain seeing them there, then seeing them in class later that day. It’s close enough for a commute, but far enough that people don’t usually just stop in for the morning.

There are some upsides though. If I were to be hospitalized, I’d be hospitalized there and my confidentiality would be safer than it could be in any hospitals around here.
I also feel like in this other city, I am suddenly free from a lot of my worries about privacy. I’m in this city where hardly anyone knows me. It’s liberating.

I have some serious doubts that #26 is going to work out. I’ll give it one more appointment to see if things improve, but otherwise I’ll move on. If nothing else I’ve learned that Second-Closest-City is a viable option for finding therapy.

The more you need help the less willing people are to provide it + the intersection of work and treatment

A few weeks ago I decided to give CBT another shot. How is it fair for me to fully reject it as a treatment option for myself, when my experience with it has been so poorly applied?
I picked out a local prestigious research center and gave them a call.

I felt that maybe the failures with my previous efforts to get “real CBT” were because I was looking for treatment in the community rather than from researchers. Maybe this “empirically supported treatment” only exists in the magical world of academia. The treatment outside might share the same name, but maybe it is something different.

In the past I’ve avoided treatment research studies (even though I’ve participated in many other types of studies) because I worried about the guilt I’d feel when I didn’t get better. I don’t want to ruin their study.

I don’t talk about my work here much, both to maintain my anonymity and due to confidentiality rules. I love what I am doing and I am making amazing professional connections. It is doing wonderful things for my developing career, but not so good things for my ability to find treatment. I am very concerned about keeping my crazy separate from my professional life. Most of the people I work with are therapists.
As my therapist list grows longer and longer and my work social network also expands I’m running into increasing problems of overlap between the two. I know that both therapists number 23 and 25 in particular had some form of connection to people whom I work with. I’m sure others have had connections I don’t know about.

S.M has tried to assure me that some amount of this problem is very typical for folks working in the mental health field and that clinicians should be able to handle it tactfully. The problem is that most people only have one therapist they are awkwardly avoiding in their professional life. I have 25 and counting.
If I knew for sure, ‘ok this therapist is the last one I will ever have to see, because this therapist will be a good fit’ then I might be less concerned about the therapist possibly knowing a coworker or attending some of the same conferences as me. The problem is that in all likelihood therapist number 26 won’t be able to help me any more than the other 24 (S.M is excluded as I only left him because he’s located far away). As I see more and more therapists I cut off more and more career options. I wish I could wipe my identifying bits of information out of a therapists head after I fire them.
The ideal therapist for me would be completely professionally isolated, the problem is that someone that isolated is not likely a very good clinician.

It may seem like I got a bit off topic in the above paragraph from my thesis sentence, but here’s where it connects. Something that made this Prestigious Research Center (henceforth known as PRC because psychologists love acronyms almost as much as Unitarian Universalists) a wonderful choice for my treatment is that I have zero desire to work there. We have differing theoretical interests and this is a place that would be particularly hostile for a person with my perspective to work. I could go there as a patient and not feel like I am blocking off a future job opprotunity.

I played telephone tag for a week with PRC and finally got in touch with a fellow who conducted a phone screening interview. I prefaced the interview by letting him know that I realize I’m not the ideal person for their research, due to my large amount of treatment experience and number of co-morbid diagnoses. He said this was fine, because the research clinicians also see patients there outside of the studies.
I thought this was great. I could get the research clinician without the guilt of sabotaging their study.
He said that sometimes they do have to refer people out with certain kinds of problems that they don’t work with e.g. substance abuse. As substance abuse is not a problem of mine, I wasn’t concerned.

I became even more attached to PRC when he told me that all of their patients go through a thorough assessment prior to therapy (things like personality measures, structured clinical interview etc) with an accompanying report.
I have a large stack of neuropsychological testing, but never any formal assessment, independent of the treatment, about the rest of my crazy. If nothing else I was excited about the idea of a beautiful organized report with charts and standard deviations. I adore data. Even if this therapy didn’t work out at least I’d have a report (albeit one biased towards militant CBT research) to show future clinicians.

The phone interview lasted an hour and a half. I was told I’d get a call back from the main desk to book an appointment for the assessment. Instead the fellow from the phone interview called me back to say they were unable to work with me. He’d talked to his supervisor who told him they had a policy of not working with anyone who has had more than 2 hospitalizations in the past 5 years (I’ve had 3). Then he offered me a referral to Other Prestigious Research Center.
The problem? Other Prestigious Research Center is where I work. Not in the specific part he referred me to, but very closely affiliated with it. This isn’t just a matter of me being obsessed with boundaries where I avoid people even loosely associated with my work. This is closely related enough that it would be unbelievably inappropriate for me to look for treatment at this particular location.
I was so taken by surprise that I actually told him why I couldn’t use that referral. An unusual self-revelation for me.
He got back to me the next day with more referrals except this time for people in private practice. When I googled them it turns out they both worked at the same Other Prestigious Research Center that I have to avoid.

So my plan of getting CBT was foiled again. I called S.M. asking for a referral. I feel so awful coming back to him over and over. He has a hard time making these referrals because he doesn’t know many people in my area.

For the past couple of years he’s been trying to get me to see a “senior analyst” for a consultation. Someone too busy (or mostly retired) to take on any new patients, but who could be a fresh set of eyes for my problems and would know clinicians in my area well enough to select a strong match.
I’d been turning him down, because I didn’t want to add an extra person who knows my problems to the world unless they were someone I was planning to meet with long term. I finally agreed to give this a shot.
He told me a name and I googled her to establish sufficient separation from work. She is loosely connected but far enough apart that I can tolerate it. S.M told me he would give her a call and see if she could see me for a consultation.

It been a couple of weeks. I’m not sure what’s going on. I guess she’s not answering his call? S.M. keeps telling me he expects to hear back soon, but it hasn’t happened.
Meanwhile I’m waiting, feeling like I can’t try to pursue other options (as if I even have any) until this sorts itself out.
I’ll go to work next week where I’m surrounded by therapists, while I am still unable to find a therapist for myself.

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.

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.

24 hours

It’s scary how fast things change.

A month ago I was having a perfectly fine uneventful day. It was the last day of my week off before school started. I was feeling wonderfully relaxed.

Then I checked my mail. I’d previously requested my records from a partial hospital program I had been to several years ago. They’d arrived. I wanted them more for my obsession with recording keeping and possessing anything anyone has ever  written about me and storing it in my filing cabinet than anything else. There was some curiosity about how they would write about the part where I was forced to take off my pants despite clearly refusing, but mostly I planed to skim through it and file it away.

First couple of pages, nothing too exciting.

Third page. “Hey! They got my age wrong. Typical.”

I read more. “Wait a second. I don’t have schizophrenia. ” I looked at the top of the page. It had someone else’s name on it. It wasn’t about me. There were 3 pages of someone else’s records in the middle of my stapled packet.

To say I was not pleased would be a major understatement.

Confidentiality is a major hot button issue for me. If they were careless with this person’s info maybe they were or will be careless with mine?

I work very hard to keep my privacy. I don’t have any close friends and especially not at school. I can’t trust anyone. If someone gets too close they might find out how crazy I am and somehow that will lead to my school finding out, because no one can keep a secret and that will lead to me getting kicked out of school again. I know it’s paranoid, but I have to protect myself. No one else will.

This reactivated and exacerbated all of my fears about my privacy being violated, anger towards health professionals who have been sloppy with confidentiality in the past, anger towards people who have used my personal information against me. I had just an overall sense of powerlessness, anger and feeling overwhelmed. I can’t put it into words that do it justice so I’m just going to stop trying. Point is I was extremely upset. I’m getting teary now a month later writing about it.

It took less than 24 hours for me to fall apart. The day after getting the letter I called the hospital. It took talking to 3 people at the hospital to get someone who understood what it meant when I said “HIPAA Violation”. One person said “Hippo Violation?” and tried to transfer me to security. No joke. Class act they’re running. They fed me a “We’re taking this seriously” line.

I was having cycling panic attacks. I’d taken my maximum daily dose of klonopin and it felt like I hadn’t taken a thing.

So what next? Clearly the logical step is to take a bunch of painkillers, right? Of course. So I did that.

And well I had a box of nicotine patches I’d been hanging onto for over a year just this sort of occasion. I’d thought about throwing them out before, lucky for me I still had them. I put all of them on from the previously unopened-box.

I lay down in my bed for awhile. I’m not sure how long, maybe an hour. I decided I’d made some bad decisions. I took off the patches and made myself vomit up as much as I could. I was extremely dizzy. I realized I had no mouthwash. I zig-zagged my way over to the store to buy some. Came back, vomited some more (this time without the help of fingers).

I felt significantly calmer once the dominant problem shifted from emotional to physical. I went to sleep for the night. I was still a mess for the following 2 weeks,but that first 24 hours was the worst part of it.

It is terrifying to look back and see how quickly things escalated. At the time it felt like much longer than a day. It’s scary to know that no matter no stable I am for how long these things can still happen out of nowhere. I’m always at risk that one day I could be fine the next I might kill myself.

—

This is the end of the post, but here’s some more writing anyway. I didn’t want to get bogged down with extraneous information that isn’t about the point of the post, but here some is.  I didn’t want this swept under the rug. I wanted to throw everything at them and not let them get away with it. I called more lawyers than I could keep count of and each kept referring me to another lawyer. I kept calling them until I reached one who never returned my call. A lot of this lawyer-calling was more related to my past school issues than my present issue. I was extremely lenient with my school. I could have been significantly more aggressive, but opted for gentler methods because I wanted to preserve my relationship with the school.

Ultimately it turned out that part of the other person’s file had been put in my folder my the social worker who had done both of our intakes. None of my pages were missing from the file (or so they tell me). They said they’d “talk” to the social worker. So wrist slapping, basically. I get it mistakes happen, but these mistakes can have big consequences.

Oh yes I should have gone to the hospital. Blah, blah, blah. Don’t anyone dare lecture me. I’d have gladly gone to get checked out physically  at the point where I’d vomited things up. But I didn’t want to be trapped there and risk messing up another semester of school. I know okay, priorities, maybe ours are not the same. School trumps physical health. And also wasn’t exactly feeling very trusting about hospital’s abilities to keep my confidentiality so no way was I going to risk telling them more information.