Saturday, October 13, 2007

Let Me Tell You About My Illness

So I'm standing at an event, drink in my hand. It's a work thing. I ask the gentleman next to me, "What's new?" I don't know what I expected, but there was another man next to us, someone I didn't know, and the answer I got wasn't quite what I was expecting.

"My psychoanalyst released me." Okay, I didn't know you had a psychoanalyst and I didn't know it was up for discussion, but fine, we talked about his therapy for a few moments and moved on.

It happened years ago, but I brought it up because in the comment section of some of our posts, people have brought up the issue of feeling stigmatized and discriminated against when they've talked about their mental illnesses.

I'm never sure what to make of this. I know many people who are so very successful and who suffer either quietly or rather openly from psychiatric disorders. People seem to have their own valence for privacy needs. As a med student, a professor I barely knew told me about his anti-depressant use-- he was very matter-of-fact about it. And perhaps it's because I'm a psychiatrist, but in my personal life people mention all the time that they're taking such-and-such a med or seeing so-and-so for therapy. Okay, you say, it's because I'm a shrink, but I'll tell you that they aren't always quiet about it. One friend, a well-respected physician, told me the details of his entire family's psychiatric issues while we watched an event at our kids' school. He had a rather large audience for his story and I don't think he cared. In case you missed it, Dr. X takes Celexa and is in both individual and couples' therapy. I could fill a blog with these stories.

Okay, so what about my patients? Some of them are pretty quiet about their illnesses or issues, though most tell their family members. Others are rather vocal about their issues. Does it hurt them? Do people run the other way, do jobs get lost, are they treated poorly? From what I can tell, if someone has friends when they are well, if they have a job when they're well, people are understanding.

I don't give advice on this issue: do what you're comfortable with. If someone thinks the information might be used against them, they should keep quiet about their psychiatric disorders and treatment. Obviously, there are venues in which privacy isn't a legal option-- you can't omit your treatment with medications if you're a pilot or astronaut, and the list goes on....

Here are a few factors that I think play a part in how the fact of mental illness is received by another party.

-- The other person's own experiences with psychiatric disorder. Some of my patients seem to be magnets for people with their disorders. When they tell others about their diagnosis, they aren't shunned, instead they are embraced by people who are relieved to have found someone to unload their secrets on, someone who has been there themselves. If the other person's only experience with mental illness, however, is the psychotic person who shot their mother, well.....

-- The delivery. If the person with the problem is nonchalant about it, it's a less of an issue than if they're confiding their deepest darkest secret. Of course, confiding one's deepest, darkest secret has its place, too.

--The bizarreness of the symptoms. Most people have some understanding of sadness or anxiety and can extrapolate this to a severity worthy of a diagnosis. Symptoms which are difficult for most people to relate to are more likely to get raised eyebrows. I'll hold off on examples here, but feel free to let your imagination run wild. Which leads us to....

--How much the patient's symptoms interfere with other people's lives. And for how long. So a declaration that "I have panic attacks" might be met differently by one's boss than, "I had a manic episode last week during which time I stole $40,000 from the till and spent it on a non-returnable artist's rendition of a bird's nest. " Some people suffer silently, others have symptoms that effect others profoundly.

-- Who the patient is when they're well . If a person with a psychiatric disorder is liked and respected when they're well, people are more likely to be sympathetic to diversions from their usual state, especially if they return to wellness and being that likable person.

--Any way you dice it, people are more sympathetic about Axis I disorders than they are about personality disorders.

Bottom of the fifth, Red Sox are losing 5-3.


Anonymous said...

Funny that you mention I have struggled with this. I have always been a little anal-explosive (how Freudian). And stuggle to learn to keep my issues to myself (In real life).

I vent all of my dirty laundry in cyberworld.

But in real life? I no longer tell anyone, school, work...anyone about my illness. I actually have to force myself to tell some non-psy medical providers.

So cyberfolks...get all of my angst!!!!

Do you think dentists have people showing people them their teeth?

Sarebear said...

Some of these points are a bit more murky, when one has been ill one's whole life.

It makes it kind of . . . well, there's no . . . "well-me" identity yet, but the foundation is being laid, and I'm workin' in the mud & straw pits to make me s'more bricks. Thing is, it's a rather terrifying and unsure proposition to feel like you are just sort of making yourself up, as you go, on the fly, and that leads to alot of self-questioning, and self-torment, because when you are acting in the world, without a core sense of self, you easily get blown hither and yon and can't ever be sure that it's true to yourself, since you don't know who your self is.

I'm not absolving myself of responsibility or anything, just . . . it's like flying by the seat of your pants, with a blindfold. I imagine.

Having what feels like complete paradigm shifts randomly happen to me depending on bipolar cycling and stuff, and the mania up/down thing, and so much else, that can drastically affect one's acting upon and within the world, well, that makes it even harder to know . . . which Sara is the real one? which bit of me today is part of who I really am? which behavior is affected, skewed, or caused (sometimes) by illness, disorder, etc., and which or how much of it is "me"? I take responsibility for myself as soon as I return to a state of mind where I can do so (as opposed to manic highs of whee consequences? ain't no such thang)

WHO is Sara, where is she, WHY is she, and WHEN and HOW is she? Me, she, whatever, I've talked from so many POV in this comment I'm all tangled up, anyway. Which is about as much ME as anything, I guess.

Maybe tomorrow I'll be high as kite in euphoric, blissful, exuberant and bubbly mania and none of this will be valid at all. A whole, shiny, new Sara.

Anyway, I don't know. That's about the best I can say right now, about who I am. I don't know.

So that makes things kinda problematic, from some of the points you mention, hypothetically speaking. I'm not taking this post or anything as advice for my own situation, I just wanted to reiterate that. Although it probably explains why I have little to nothing in the way of a support system, no matter how I give it my all (my "all" varies wildly and frequently and dramatically, in type, content, and other, so I can't even say how much of that is me, either.)

I can give it all I have, and still, years later, of doing that, STILL have little to no support system.

Life is cruel, them's the breaks. Feeling broken is something I DO know.

I say all the above, to show that there are other considerations, sometimes, for some of the points you mention.

Anyhoo, have a nice day, interesting post.

Zoe Brain said...

My Condition - a vent. I guess you could describe it as disorientation. Unusual though.

Anonymous said...

So you are standing at an event, drink in hand.... I would guess that the guy had a drink or two as well and we all know that this decreases inhibition.
To some extent, people will find out someone's profession and find a way to get something out of it for themselves and this holds true for the car mechanic (ya know, I have a question about that rumbling sound coming from under the hood) or a banker (so what should I do with the inheritance from my great-aunt?) or a teacher (I just can't get Johnny to pick up a book).
It is also no secret that people generally are ready to share with total strangers all sorts of things that no one would have dreamt of sharing years ago. I am not a shrink but I have had all sorts of people manage to wiggle it into a conversation that they are in therapy, they are taking medications, they are not having a good day because they have S.A.D, they are going through a horrible divorce , their child has bipolar and has gained so much weight because of the medication.
On the other hand ,very, very few people know about the medications I take. The very last person that I would tell would be a psychiatrist at a party.( I know more than a few on a casual social basis, and I imagine they do their jobs just fine, but off the job, they as screwy ,or not, as anyone else). I also, as someone mentioned already, do not always share this info with regular old doctors. There are two reasons and the first is that I do not want them to develop any notions about me based on a psych diagnosis and the second is really related to the first: I do not want them to come to the conclusion that my physical symptoms are in my head. (They could be, but they wouldn't really know so I don't want them even thinking it). I tend to tell the shrink about the physical symptoms when the arise and he tells me whether I should go see a doctor or not and also what medications will not mix well with what I am taking. If a doctor wants me to take a certain drug then I may have to say something but I keep it short.

Rach said...

Yup, totally agree. It's difficult to seperate the "well" rach from the "sick" rach. The Rach who has Bipolar Disorder diagnosis is still a part of my overall persona no matter if I'm well or not - if I am well, then Meds, therapy, and all that other stuff tends to settle a little better into the overall web of my life. I talk about it less, think about it less. My blog reflects this very well.

When I'm not well, my life seems to reflect this as well - everything becomes centralized around the illness, fighting the demons associated with the illness, and trying to re-establish balance. Not easy.

There's no cut and dry answer regarding who to tell and how much. I've found over time that yes, once I let a little bit out "Gotta go to therapy", people will approach me about how to find a therapist too. Easily dealt with by pointing them in the direction of some websites, or organizations that deal in such matters. And then I feel fulfilled that I've helped people.

Roy said...

Nice post, Dinah. It seems to me that this is really no different than other medical conditions, so that's a good thing. There are folks who would or would not talk to others about their diabetes, their allergies, their menopause, their heart surgery, their hemorrhoids, their epilepsy.

So that's a good thing. The stigma of mental illness has been reduced to the point that folks discuss it at cocktail parties. That's a good thing (unless you are a psychiatrist at a cocktail party).

But, you're right. It's the privacy valency thing here. It's also a trust thing, for most people. It's obviously not a trust issue for folks who will tell these details to perfect strangers (or imperfect strangers). But, for others, I'd guess it has a lot to do with the trust one has in the person being told. And why tell? Same reason one tells a friend or acquaintance about any other personal detail -- sharing, conversation, understanding, symmetry (eg, you told me about your trip to the ER last week so I'll see your private story and raise you one more).

The Shrink said...

"My psychoanalyst released me."

A curious turn of phrase, p'raps it doesn't cross to the UK so well . . . over here you're 'discharged' from hospital or health services and 'released' from restraint e.g. in prison.

Anonymous said...

Interesting list of factors Dinah. Exactly what one would expect from a shrink. Psychiatry wants everyone to believe the medical model for mental illness yet psychiatry is responsible for a great deal of the stimga associated with mental illness. Why not put on your list to handle your illness just like any other medical condition. Oh, thats right, psychiatry matters should be handled and talked about differently. Just how is it different if you were an ortho dr and someone would have approached you about a broken bone?

Gerbil said...

In my ill (and immediately post-ill) days I swung back and forth between telling everybody and telling nobody about my own stuff. It took a few years for me to find the right balance--especially in professional situations, as my own clinical specialty was once one of my problems. But I admit, when I give workshops, I use some carefully timed (and carefully titrated!) self-disclosure to make some of my points.

On another note, people at bus stops like to start up conversations with me. They tend to think I'm just a cute high school student (I'm actually in my late 20's), but then when they find out that I am a pre-licensure psychologist, hoo boy, do I get regaled with life stories I don't really want to hear. I happened to complain about this one day to one of my former co-workers, and she said, "I used to have the same problem. But now I just tell people that I am a podiatrist, and if I get a gross foot story, I say that I can't offer medical advice at the bus stop."

NeoNurseChic said...

Interesting post. Roy is right that to an extent it is that way for most medical disorders. I learned the hard way with the headache stuff. I told anyone who would listen, even if they probably didn't really want to know. And that got me a lot of rude comments, being made fun of, but also many comments of support - but let me tell you, the bad outweighed the good in terms of impact on my mental health. I no longer talk about it with people in general - just with the select few. And as someone said above, I vent more of it online than I ever do in person. In person, it's something I very rarely discuss now except for, "My head really is hurting right now" - that's as far as it gets. Even though I am tight-lipped about it, the thing is that if someone were to ask, I would gladly tell them.

About mental health - again, I only tell very few people, and there are some things that I have told noone - even though I am working on being more open with my psychiatrist. Some of the stigmatizing things I have heard go very contrary to what you wrote in your post, however. It's like with headaches - people have headaches that can be cured by 2 tylenol, so they don't understand people who are incapacitated by them and think they are a bunch of whiners. So goes it with depression. I have heard all kinds of comments from, "I just want to tell them to get a grip" to "I wish they would just get over themselves" and so on. Whenever I've heard people make these comments, I have been extremely glad that I have never revealed to them my psych diagnoses. And it's a reminder that I NEVER will. Reinforcement that my life is far better off if I don't discuss it. Same as with the headaches with most people, it seems.

You'd think people would be sympathetic because they have experienced sadness or some headache and can therefore imagine the magnitude multiplied by quite an extreme, but my own theory is that this actually makes people far LESS understanding. They feel they can deal with it, so you should to - and without complaining, while you're at it. Or maybe that's just a Philadelphia/NJ thing. But that's the vibe I get from most people.

When I was in music school, people were actually a TON more understanding than once I went into nursing. Hence why I was still talking about things openly when I went into nursing school and why I no longer do.

The last thing I have to say though is that I always thought I was a very open person, until the last year or so in psychotherapy, and I realized how I keep EVERYONE at a pretty significant distance from what is really going on with me and my true emotions. I guess I thought I was open because I'm very chatty, but my chatter stays at some surface level a lot of the time, and my true emotions are internal in a place where nobody is going to see them. I've learned that I'm not nearly as open as I thought - but we're working on that.

Last night, Jason and I were at a haunted hayride/mansion, which is supposed to be in like the top 13 scariest in the country. (Arasapha farms for those in the northeast.) We waited in line for tickets for like an hour and then in line for the hayride for like 3 hours or so. He asked how mad I would be on a scale of 1-10 if he lost the tickets for the hayride (I had the tickets for the mansion in my purse). I said a 5, and he said that if I lost the tickets, he'd be a 10 and would say "forget the mansion, we're leaving." He was saying that if he lost the tickets, it's funny that I would be a 5, but even he would be a 10 at himself. It's the perfect example. I WOULD be really mad - but for fear of driving him off or causing some relationship-ending fight, I would stuff it way down and pretend I didn't really care. That's about something trivial, but this is a great frustration for me - not telling people how I really feel, even about the most basic of things. And this is also partially the reason why I don't discuss medical things with people anymore, because when their reactions come back to me, I cannot divulge what it is I really think/feel about what they have to say, and then I end up feeling worse.

Take care,
Carrie :)

Anonymous said...

Okay, I should add another bullet point: How Much You Talk About Your Illness.

"I'm struggling with....." fill in the blank, is taken differently by people based on how much detail the person suffering goes into. This, however, isn't limited to psychiatric illness, it's any malady whether it's the anxiety, psychosis, headaches, back pain, any kind of pain, or the details of every bowel movement and exactly which foods trigger your diarrhea.

Please don't get me wrong here, I'm not condemning people for talking about their problems-- anyone who's bumped into me during those handful of times my back has gone into spasms know I don't suffer in silence and has had the details of exactly which activities aggrevate it and how swimming cures it. As Clink is fond of saying (and Roy is fond of agreeing with in his own sweet non-verbal way): I talk too much.

There is great value in venting and this is what friends and loved ones (and psychiatrists :) are for. Part of the deal is that sometimes you shut up and listen (and maybe type a blog post about something totally different) while you half-listen to someone rant about their GI tract, or whatever. But if you greet every stranger/employer/random person at the busstop with "Let me tell you in incessant detail about my corns and ingrown toenails" well, they might avoid you. What can I say?

Delivery. Context. Knowing your audience. Love always helps.

NeoNurseChic said...

Haha Just so you know - I wasn't like that. The way I brought it up - well, it's too much to get into here. But a lot of it had to do with relevance. It was. I've never been one to talk about my pain very much, except with close loved ones, but I tell a lot of my stories very detached - the play-by-play of what happened without the emotional detail. In terms of depression, I don't discuss it, and never have discussed it, except with a few select people, because I hear so many people making comments that I referenced above. Those comments weren't made to me, but they were made about other people suffering, in general, so I often take that many people are really not going to be supportive, based on having been there.

Me? I'm always empathetic of anyone going through similar troubles - especially headaches. I don't think someone should quit whining about their tension headache or their migraine because I have clusters. I'm not like that. That's why I've generally had a hard time understanding people's reactions at times.

But it takes all kinds.... These days, I prefer to write rather than talk - it's just something I've learned in various ways.

Midwife with a Knife said...

I feel like this was covered in some sort of fluffy "illness role" lecture in medical school, and I actually do believe that it applies to all illnesses, psychiatric and medical.

Neonursechic: I think it's a matter of not ever having had really incapacitating pain, which most people really haven't had, and so when you're incapacitated by a headache, they have nothing to compare that to.

I will happily post about colitis issues on the internet where anybody can read about it, and it's possible/probable that people I know read my blog, but don't really talk about it at work or with friends or family much, with a few very noted exceptions. I especially don't talk about it with my mom, because I'm tired of her calling it irritable bowel, and saying that if I'm so stressed out I have such problems from irritable bowel, I need to make some lifestyle changes (which always seem to come down to moving to the same small town that she lives in). But then, she never really listens to what I say.

I imagine that my approach to a psychiatric diagnosis would be much the same. Talk about it with close friends, certain family members, few other people. +/- the 600 people who read my blog each month. ;)

Sorry for the tangent!

Fat Doctor said...

I make no bones about my history with depression, which is better now. I don't advertise it, but if people ask, I tell them.

Imagine my surprise when one of my new colleagues (who I thought probably hated me)said, out of the blue, "Over the years, I've bought about 50 books trying to teach me how to not be so pissed off all the time, but none of them ever worked."

That was the end of the conversation. The very end. No small talk or anything.

He's depressed. Now I get it. He doesn't hate me, per se, but the world and possibly himself.

I get him now, and I understand. Sometimes depression loves company.

Gerbil said...

Good (bullet) point, Dinah, and I think it also begs the following question: do you have the illness, or does the illness have you?

NeoNurseChic said...

MWWAK - I agree with you, but also think the other exists as well. Or maybe that both are pieces of the picture. In the support literature for cluster headache to provide for family/friends (which I did give to one of my bosses shortly after beginning work there), it has a list of things NOT to say, and one of those is, "I had a cluster headache once" (nobody ever has just one cluster headache...) or "Go take 2 advil and lie down." Part of it is that people cannot imagine/fathom so that makes it difficult to understand. The other part is that most people have experienced a headache of some sort, so the natural thought (and I admit there was a time when I might have thought this way) is, "Well, how bad can it really be? Maybe they're just more sensitive to pain than I am..."

I remember having a discussion with the head of the avascular necrosis/osteonecrosis support group, and she said how much luckier the headache groups are because people can relate to headaches, but AVN/ON is an obscure, unknown disease that people cannot imagine having. I understand her point, but I also counter it with the fact that people knowing what a headache is is not always a good thing. JMHO! I'm always open to new viewpoints on it, though!

Gerbil - Very wise words. I'm a person with various medical problems, but they do not define who I am. In fact, I'd say most of my current existence flies in the face of the things I suffer with, as I continue to function/work full-time/succeed, and so on. To an extent, it has to do with mindset, and I totally understand that this is sometimes easier said than done, and that sometimes it is easier than others. I try never to use my handicapped parking permit unless necessary, but then tonight I used it because I really needed it - and sometimes I have to tell myself that it is okay to not feel well - that I don't have to be some superhuman all the time who lives a completely normal life when things really aren't normal.

Depression is one of those things where it may not define who you are when you are doing well, but when you're not, it's all you can think about. Lately that has been a problem for me, and I find it creeping into conversations with people where I wouldn't normally discuss it - like my best friend Lindsay, and even the extent of things that I have told my boyfriend. I normally reserve the nature of what I discussed with them for conversations with my psychiatrist, but I was overwhelmed and feeling completely crappy, so I confided in my 2 friends, while also making them promise not to say it to anyone else who knows me. So sometimes when we are not doing well, the illness takes on a more defining role, but I like to think that we should all have the mindset that we own our illnesses, and not the other way around.

Sorry to ramble on and on and on...!

Take care,
Carrie :)

DrivingMissMolly said...

Great post, Dinah.

Yup, I am personality disordered. Borderline Personality Disordered. Apparently I'm supposed to be a slutty lush, but I'm not.

However, I don't know who I am (except Unhappy), I don't know what I'm supposed to be, and no one will tell me.

Oh, yeah, depression--check, anxiety--check.

All therapy has done is peel back some layers and exposed the rage layer. I'm angry all the time. I want to kick everyone's ass.


Sarebear said...

Hrm. I just cut my comment, and am going to go paste it as a blog post on my blog.

Anonymous said...

Well, if the person proceeds to spend 20 minutes telling you about their mental illness without stopping to take a breath or give the other person a chance to respond then I would think maybe they need to be back with their therapist.