The Care Effect

Dear Feelers,

Yes, I'm talking to you, people who feel, and I want you to ponder this post.

Throughout my education (I studied psychology at university) there was an enormous amount of discussion about something called the placebo effect. Let me explain this phenomenon:

When a person is unwell, and they go to a doctor to get medication for whatever condition it is that is affecting them, the expectation is that the medication will work to take away the symptoms of the condition, or that the meds will "cure" the condition. Sometimes, though, doctors have no cure for what ails you, and so they kind of throw a prescription at you, with both of you hoping it will work. You go home, take the pills, and lo and behold, a few days or a week or so later, you feel better. Was it the pills? If it wasn't the pills that made you better, what did?

What if your doctor gave you "sugar pills," tablets that look like medications, but are actually really just sugar, with no actual medicinal ingredients in them? What if these sugar pills DID relieve your symptoms?

When a person finds relief in their symptoms despite having taken a sugar pill, or a med that isn't intended to have an effect on their condition, that is known as the "placebo effect."

For some reason, I was taught that the placebo effect is kind of a bad thing. Let me give you an example to explain what I mean:

Depression is medical condition where pills are often prescribed to relieve symptoms. Surprisingly, if you look at the research on medications that treat depression, the studies show that the medications for depression are no more effective than a sugar pill. So basically, whether you take a sugar pill or a medication intended to treat depression, your chances of getting better are equal with both treatment options. (The caveat is that you have to think the sugar pills is a medication intended to treat depression, and your doctors can't intentionally lie to you.) And just for the sake of being a responsible writer, I want to make it clear that medications DO work to treat depression, and work BEST when they are combined with therapy as part of the treatment.

Often the placebo effect is used as a defense for people who take issue with using medications to treat conditions affecting the brain and behaviour (like depression). For people who don't want to or don't like to take medications, they generally say something like, "Well if people can get better on a sugar pill, why should a person have to take drugs? That's just big pharma trying to control us."

Another issue that the placebo effect brings up is the issue of personal control and power over the mind. Imagine taking part in a study on depression (assuming you had depression) where you were offered a pill every day. Imagine if you felt some relief of you symptoms over time, say six weeks, where you took a pill and had to measure your symptoms at the end of every week. What if at the end of six weeks, you reported that you feel pretty good, much better than when you first entered the study. Then, what if you were told that the medication you were taking was NOT a medication at all, but was a sugar pill. How would you feel? Conflicted? Duped?

People assume that we always have control over our minds; how we think, how we react, how we feel about things. I'm not sure this is true. In fact, I'm pretty convinced this is untrue, that we have control or will over all aspects of our mind.

I think the placebo effect is an interesting and subtle reminder that life has powerful undercurrents, and our brains, minds, thoughts, behaviours, respond to these undercurrents. One of the most underrated "undercurrents" is simple social interaction... talking to people, feeling like people like you, feeling like you belong among your tribe of humans.

Let's imagine that a person had depression. What are the symptoms? Lack of motivation? Feeling flat? Social isolation?

What is the effect of being in contact with people who are interested in hearing about what is happening to your body? What is the effect of being around professionals who understand the concept of "illness," that you feel unwell, unlike yourself, and that you wish you could feel like you did before? What does is the effect of being around a person who will listen to your worries and empathize with you clearly? What is the effect of simply being around people? Being cared for?

Placebo effect my ass; it's the care effect. And it's not a bad thing. We should all be able to benefit more often from the care effect.

Now should we prescribe medicinal pills in cases where a placebo is shown to be equally effective? I'm not sure what the answer is to that, but I know doctors aren't allowed to lie to their patients, and for a placebo to work, one needs to think it's a medical treatment. However, like in our example of depression, there is a treatment option that produces healthier people than taking a pill alone. So maybe we just need to rethink our concept of "care."

Popping my people pills,
O.

Some things I wish I knew years ago...

Dear People who Suffer from Side-Effects Like Nausea, Dry-Mouth, Tiredness, and so on,

When I was first diagnosed over 10 years ago, nobody really told me much. Mind you, I think I was pretty young, and so I'm going to optimistically believe that they just didn't want to burden me with more than I was already dealing with.

I was put on medication pretty much within days of my diagnosis, and while it was clearly explained that there would be side-effects, there was never much followup about what that would mean, and where I could go to find help for my side-effects.

One of the first side-effects I noticed was hunger... I always had a low grade rumble in my belly that felt better when there was food in it. I think this side-effect exacerbates the weight gain problems that happen in a lot of people who take atypical antipsychotics.

My solution for this rumbling was to eat... all the time... but to eat food that had super high amounts of protein - and just to snack perpetually while avoiding large meals. (Since I was feeling consistently fullish from my perpetual snacking.) Luckily, my solution worked, since I managed to combat the rumbles, and I didn't gain significant amounts of weight.

Another negative effect of my medication was sleepiness. I was so tired all the time. My solution was twofold: For many years I arranged my schedule to start my dater later than everyone else so that I could sleep a little longer and to take an afternoon or morning off from school or work during the middle of the week so that I could catch up on sleep. This worked for me as a student and as a part-time worker, but has some pretty obvious limitations in the 9 to 5 working world.

The side-effect that bothered me the most was dry mouth. Because of dry mouth I have had problems with dental decay and with canker sores.

Little did I know up until about a week ago that there are actually products that you can use to help ease dry mouth and its associated problems. Why on earth did no one tell me this?

I remember telling my family doctor and my psychiatrist about dry mouth problems. And I know that more than one dentist pointed out that I may have dry mouth due to some of the things they saw. So why did not one of these health care specialists think to inform me about the things that were available to help this.

As a poor university student I often had to gather my pennies together so that I could get dental work to repair the damage caused by "insufficient oral lubrication." Now as an adult without dental coverage, I find myself still having to pay for dental problems that began long ago.

I really wish that someone would have asked me long ago about my side-effects. I wish they would have been specific in their questions. And mostly, when I complained, or when they noticed something was wrong, I really wish they would have taken it upon themselves to inform me of the things I could do to help make my life easier and more comfortable.

There is a lot of self care that is required when you have a problem of mental health. And sometimes it's just almost too much to bear to deal with the disease itself (and the discrimination issues it often carries). Why have I had to deal with the additional time-consuming burden of experimenting with schedules/organization/products when this information is out there, but just not readily available to me?

Is it time for a What to Do When You're Expecting (A Bout With Mental Health Problems) handbook for psychosis and/or other conditions?

Seriously. Shit. So much of my time and money wasted on problems that could have been solved before they even started!

Tucking her pennies away for another cavity,
O.

see... it's not just us!

Dear doctors, people who go to doctors, and people who look after doctors,

I found an interesting article today that describes how doctors, like the rest of the population, are susceptible to mental health problems... However, according to the article, doctors are very unlikely to seek help, fearing that it will affect their professional status. (The link is available at the bottom of this post.)

"Some doctors believe the stigma of mental illness is magnified in a profession that prides itself on stoicism and bravado. Many fear admitting psychiatric problems could be fatal to their careers, so they suffer in silence."

In an ironic twist, doctors are one of the groups that are LEAST likely to seek treatment for mental health problems, despite all of their education about mental health. And even more ironic, doctors are much more likely than than any other demographic to suicide. (Sadly, they are the most successful at suicide attempts because they have access to drugs and metabolic information that regular old folks don't have.)

"A psychiatrist in the New York area who asked to remain unidentified said he had suicidal thoughts every day for several years. But in medical school in the 1980s, he said he was so embarrassed about seeking help for depression that he went to a pay phone instead of his dorm to call a therapist."

So, isn't it interesting that the very people who keep us healthy are the most likely to have serious issues of mental health?

And doesn't this point to the fact about the detrimental effects of stigmatization? Doctors are so afraid to "come out" about mental illness because they fear it will affect their careers and their status.

"There could be reasons the stigma would be worse for doctors, "but you can come up with just as many reasons why physicians would be better equipped to acknowledge" mental illness, she said."

It's a strong indicator of how pervasive the effects of stigmatization are when some of our most informed citizens (in terms of understanding problems of mental health and their effects) are detrimentally reluctant to seek treatment for their own mental health issues. Very interesting how what's good for the gander is NOT good for the goose... very interesting, but mostly, very very sad.

Here's the article.
Medical know-how, access to drugs raises suicide risk for doctors

Wishing everyone good health,
O.

more comments on post secret postcards...

Dear post secret poster (and anyone else who works with people with mental health problems),

"I work as a counselor for people with mental illness and it scares me how much I can relate to them. I'm afraid of ending up like them."
See this secret on : www.postsecret.com


I can relate to you too! Wow! Isn't that amazing?

I can relate to your desire for a happy, fulfilled life. I can relate to your wishes for people who love you unconditionally. I can relate to your need for arms you can fall into when you feel weak, tired, afraid, or unhappy. Arms that will support you, and warm your heart in your coldest and loneliest hours.

I can relate to the notion that some aspects of your life might be dissatisfying. I can relate to feelings of frustration, anger, or despair. I can relate to thinking I'm not being paid enough for my skills. I can relate to wanting a better home, or car, or job, or better health... or even just more energy!

I can relate to feelings of low self esteem. I can relate to feeling unloved, or unwanted, or just unneeded. I can relate to feeling useless, incompetant, and frankly overwhelmed; feeling like I can never do enough, or that the things I do don't even matter because the problems of the world are so big... and I... well, I am so small.

Isn't it amazing how much we can relate to eachother?

Or does this scare you for some reason?

Why does that scare you?

Are you afraid of me?

Are you afraid of being "like" me? (Whatever that means!)


Relating to you in more ways than you will ever know,
O.
PS. Sometimes I'm afraid of winding up like you too!

don't keep me waiting... it makes me anxious, but mostly impatient!

Dear Psychiatrist,

I met you for the first time at that appointment. Overall the appointment went well, I think. You seemed kind, energetic, motivated, and most importantly, caring. I like it when people are caring, because it means that if the proverbial shit were to hit the proverbial fan, then you would be there to help or at the very least, to offer guidance.

Honestly, I was a little nervous to meet you, considering the potential implications of a visit gone wrong. I mean, your sole job is to judge the status of my mental health; that kind of scrutiny is pretty intimidating, you have to admit.

(Remember all those years ago when you defended your thesis? That's almost how it feels to meet a new psychiatrist.)

I knew that the first thing you would analyze was how I was dressed, and how well I was groomed. You would then look to see how I responded to conventional greetings, whether or not I made eye contact, and whether or not I responded to your outstretched hand.

As we chatted, I know your brain would tick away to make sure that my time sequencing was correct, that I was aware of my current surroundings and relevant current events. I knew you would also look for signs of anxiety in my body language, signs of thought blocking, and I knew you would be analyzing my ability to relate concepts and ideas into a unified and coherent dialogue. You would also continue to make sure that my body language was appropriate and that my affect related to the content of my speech.

Yes, you had a lot to do in those 20 to 30 minutes we spent together. So I sat in a hard little chair, waiting; reading to keep my mind off the intense scrutiny I was about to fall under.

I have to admit, I was a little pissed that you kept me waiting for 30 minutes while you discussed your latest research project with that guy. And yes, I could hear every word as I sat in that dark little hallway that doubles as a waiting room. Your walls are very thin; therefore, you may want to consider keeping your voice down the next time you proclaim that "it's okay" to keep your patients waiting after your coworker asks if he should meet you later to talk more.

For thirty minutes I sat in that little chair, my bottom growing numb, reading, looking at my watch to note the time, and occasionally squeezing the tissue I was holding. For thirty minutes, that lowly little tissue soaked up the evidence of my anxiety and allowed me to offer you a dry hand when you came to greet me for the first time.

I really did not mind waiting. I didn't really have much to do that day.

The next time it happens though, I might actually have something to do, and I may feel compelled to remind you that time is money, and I'm not getting paid by the hour for these appointments.

Your anxiously impatient patient,
O.

is olivia a bitter person who is antipsychiatry?

Dear People Who Need to Know,

My bias: I am female. I am old enough to have enjoyed the heydays of Nirvana, but too young to grasp the reverence for classic rock. I look white, but I have a visible minority heritage that isn't obvious by my appearance. I grew up knowing too well what a fridge looks like when it's empty. I have the benefits of a university education, and hold dual degrees, one relating to the realm of medicine, the other relating to the realm of metaphysics.

I have been diagnosed with what the medical profession likes to call a SMI (severe mental illness). I have lived intimately with the effects of my diagnosis for 10 years or so. My condition has affected me in profound ways in a psychological sense, in an economic sense, and in an interpersonal sense.

Pardon me if my experience ever clouds my judgment or colours my words, and I will do the same for you.

So, given my experience, I'm going to lay out *my* opinions on psychiatry, and hope that my words are not too often abused or distorted from their original context.

In a general sense, since my experiences with psychiatry have been positive, and I see a movement in psychiatry towards accountability and collaboration, I regard psychiatry as a potential benefit for those who are affected negatively by their mental health.

I know that many people have suffered abuses (in the form of stigmatization, discrimination, sub-standard levels of care, enforcement of unwanted treatments, literal abuse, etc.) at the hands of the mental healthcare community. I respect your experiences, you own those experiences.

But those experiences are not mine. And although this blog will express a significant amount of frustration with current standards in health care, I am not fundamentally anti-psychiatry.

In the same way that abortion is a contentious, weighty, (and I believe, personal) issue; mental health is an issue that carries with it a burdensome load that is equally personal, weighty, and contentious.

So, in short, if a person confided in me that they were negatively affected by their mental health, I would suggest to them that they may benefit from seeking help from the medical community. That being said, I would be very careful about the places I would direct them to, since (those who have received mental health treatment are well aware that) not all doctors are created equal. Some doctors are simply better; being more approachable, more informed, and more invested than others.

Your 'Only Human' and Fundamentally Biased Blogger Who Genuinely Respects Her Treatment Team,
O.

dear people who look after people professionally

Dear Doctors,

As someone who has been diagnosed with a psychotic disorder, I have had a lot of contact with the health care community. Some of these contacts have been very helpful and fruitful for my personal development and physical comfort, but other contacts have left me leaving your offices in a state of despair, frustration, and/or anger.

When treating any patient who comes through your office, please remember the following:

With the ready availability of information in the form of print and electronic data, I know that I have a lot of knowledge at my finger tips. In my opinion, knowledge is power. And for a long time, you folks had all the power. (Goddam the invention of the printing press! It was the beginning of the end for authority!)

Thankfully, with the encouragement of education in our culture, I now have a degree of power too. I now know many of the things that you know. I may not understand things to the full extent that you do, but trust that I have a few brain cells to rub together, and what I do not know, I am fully capable of learning.

I also know that my diagnosis often interferes with how you relate to me, no matter how impartial you claim you are. I can understand how the word "psychosis" glares up at you from your charts, threatening every interaction we have with its presence. I am acutely aware of this since I have lived my life branded with that word for close to ten years.

Please think twice before you think to patronize me by brushing off my physical discomforts as "stress" or "anxiety." And when I have found an "unconventional" solution (by YOUR standards) that solves my physical discomfort, please do not patronize me again by brushing it off as a placebo effect.

Keep in mind that you do not live in my house. You do not know me. You see me for 15 minutes, perhaps 3 or 4 times a year. So spare me your judgments and do your job with an open mind. And if you don't understand something, maybe you'd best go crack open a book, because I know I've done my research before I've even set foot in your office.

Your Defiant Patient,
O.