Monday, April 11, 2011

Diagnostic Labels That Change Lives



From time to time, our readers comment that they are distressed with a diagnosis a psychiatrist has given. They've met with a doctor, talked for a while (half an hour, an hour, maybe two hours) and based on whatever information the psychiatrist has, a diagnosis is made. Maybe it's right, maybe it's not, and maybe the diagnosis will change over time. Some readers have commented that they object to the idea that psychiatrists must assign a diagnosis to be paid, when in fact there is no diagnosis, and they think that's wrong. The psychiatrist should work for free? Since I don't accept insurance, I'm not obligated to make a diagnosis, but if I don't put one on the statement, the patients won't get reimbursed. Some tell me that they aren't submitting psychiatric claims to an insurance company, others don't have insurance, and many do submit claims. I'm left to wonder why someone with no psychiatric diagnosis would consult a psychiatrist to begin with, especially since some diagnoses (Adjustment Disorder, for example, or Anxiety Not Otherwise Specified) are not particularly stigmatizing.

I understand that people are miserable with mental illnesses-- the symptoms are debilitating and miserable. I also understand that people are angry about being told they have an illness that they don't agree they have-- it's a bit like being judged, or like feeling unheard, or even dismissed. Some docs may not spend the time necessary to make the right diagnosis, sometimes the diagnosis evades us, and sometimes patients don't agree with us as to what we deem 'pathology' or symptoms, versus normal reactions or behaviors.

What has perplexed me, however, is the claim that the label itself is what causes the problem. I've been practicing for a long time, and I'm not aware that anyone has ever had a problem because of a diagnostic label I've stuck on an insurance form. I think that most people who worry that their diagnosis will cause others to judge them negatively, simply don't tell people that a doctor says they have disease X. And many will say that's unfair, that people should be able to openly announce their psychiatric illnesses without worrying about the reaction or judgments of others, the way they do their medical illnesses, but personally, I'm not much for announcing health issues in open ways unless it's necessary. Enlarged prostates, diarrhea, vaginal discharges, coughing up phlegm, the details of where one is injecting one's insulin, are simply not everyone's cup of tea at the dinner table.

Sometimes people behave in distressed or dysfunctional ways and the fact that they have a psychiatric disorder is obvious. This is not because of the title of the label, it's because of the symptoms of the illness and the person's behavior. The psychiatrist's diagnosis gave it a name, but the problem belongs to the patient.

Here's my question for you: if a diagnostic label
alone has caused your life to change, tell us your story. I don't mean if it's upset you and caused you personal subjective distress, or if you've worried about having your psychiatric history discovered, but if the label itself has caused you outside difficulties or limited your life, tell us how.

33 comments:

Anonymous said...

After years of suffering, and finally being diagnosed with a Bipolar Disorder - it was LIBERATING. I felt like I was hitting my head against the wall and running in circles for so many years. A diagnosis to me has always meant a means to coping... a road map for your journey of life. The journey sucks at times and sometimes it is incredible....

However, I don't share my diagnosis with everyone for their lack of understanding. Having a diagnosis means that I can seek out the help of other suffering - via the Internet. I can pour over books and learn more. I can get more out of my visits with the psychologist and psychiatrist.

I see the same issues where parents fight and hate the idea of "the label" when it comes to their children and learning issues. I have a child with multiple developmental disabilities. I fully embraced getting a diagnosis because then it gave us an action plan. I took the child to two different developmental pediatricians, two different psychologists. We had an MRI done, genetic/chromosomal testing done... testing done by occupational therapists, speech and language pathologists. I knew that in order to get the best for my child and to help them to succeed to the best of their ability in this world, I needed an accurate diagnosis. Waiting and sticking my head in the sand because I didn't want to accept that my child has life long problems, would not have helped them. Time was of the essence... The earlier you start to get them help, the better their chances are. It pains me to see those kids that aren't getting the help they need because their parents are afraid of the label. My kid is so much more than the labels, and I can look beyond that.

As for my own diagnosis, I often wonder if things would have been better had I been diagnosed sooner... who knows.

Psychiatric disorders are hard to discuss with people because they either get it or they don't... and some assume that you are making it up... as if you would want to intentionally go through that Hell on purpose. For that reason I do hide it as much as possible because I don't want to put myself and my vulnerabilities out there.

So I think Diagnostic labels can be liberating, but I have also seen some people over identify with their disorder and use it as an excuse to not do anything.

Anonymous said...

This is a great blog! Thank you.
I have been diagnosed with depression and anxiety for many years. About two years ago I suggested that I may have borderline personality disorder and the attitude of mental health professionals has changed. They are less warm and supportive and more hostile. The symptoms are the same, the label is different, and stigmatizing.

Anonymous said...

A changing label harmed me. It didn't really change my life or anything, but it made me a little more cautious around the psychiatrist. And it made me feel less like the pdoc and I were a team in this thing and more and more like he held all the power in the relationship. This one psychiatrist, after a year of treatment, stopped putting down the code for bipolar disorder, most recent episode manic on my insurance form and just put down the code for schizoaffective disorder. Without a word to me. That single act made me feel that I had gone from, forgive me for saying this, being a fruit cake, to being even more of a psychotic fruit cake.

I would have preferred some discussion about why and what he thought it meant to change a diagnosis. And though I may have been bordering on being ill or delusional at the time of the appt., when I said that a TV show had "cribbed" from a script I wrote 10 years earlier and that I had long ago published to the Web, I meant it. To this day, I carry around proof of the two scripts and their similarities in my car. Why do most psychiatrists just ASSUME that they are right? The guy has no information about my talent as a writer or my activities, so I must be delusional.

Psychiatry, labels, all that jazz, you guys think you are always right. But you hurt when you are wrong.

Marie said...

When I started seeing my therapist, he gave me a generic "adjustment disorder" label. My husband was laid off from his job and we were paying for COBRA insurance coverage at the time.

After three months, my therapist changed my diagnosis to "major depression." It was an accurate diagnosis. I could barely get out of bed and was not functioning well, not sleeping well, and having fantasies about my own death. My therapist shared the diagnosis with me and urged me to see a psychiatrist, or even my GP, to discuss medication.

I did.

Within three months of starting lexapro, I was beginning to feel hopeful again. I was getting out of bed and taking care of my life.

I say that to say I'm grateful to my therapist for helping me, even though the consequences have been hard.

My husband started his own consulting business six months later, and we applied for private health insurance. The entire family was approved; I was rejected.

I tried another carrier: same thing.

The diagnosis of major depression meant I could not buy health insurance.

I finally found a special program through the state I live in (ichip) where I could join a "high risk pool" insurance. My monthly premium was higher than the rest of my family combined. (I have 3 kids.)

While my husband loved consulting and was making a good living, within 9 months, he switched over to a "real" job so he could get group health insurance.

So, now we're all covered.

In reflecting on this, I wonder sometimes...could my therapist have helped me without the harsh diagnosis? Maybe. It's neither here nor there because it was TRUE. And I'm grateful for his help. But the consequences were hard to live with. My husband has a job where he travels constantly, as opposed to being here and working from home most of the time. And he likes the job less. But it is what it is...

My frustration is really at the insurance company. The irony to me is that had I not gotten any help -- gone to therapy and gotten on medication -- I would have been considered "healthy" and insurable. But because I reached out for help and was in fact healthier because of it, I was considered too much of a risk.

Sigh.

Anyway, long story. It's all worked out in the end, and like I said, when it's all said and done I'm grateful. I have my life and my health.

Anonymous said...

I've heard quite a few people tell me that being diagnosed with Borderline Personality disorder has changed the way others, even doctors and psyciatrists treat and view them. The reaction is much more caustic and that can have a profound impact on one's life.

merope3 said...

In my experience my having a diagnosis has resulted in people not taking me seriously. Although I don't discuss my mental health with the world at large it doesn't bother me that friends and family are aware of these issues. However, I have found that no matter what I say or do people just chalk it up to "the depression talking". Even my doctors did this. It is very frustrating.

In the Pink said...

I was first diagnosed with depression and put on antidepressants which made me go crazy for 2 years. Every time I actually made it to a doctors appointment I was happy and saying how well the meds were working. Then I lost my marbles and started drinking and stealing other peoples medicine until I was forced to go to rehab. They kept me over a 100 days and I came out with the diagnosis of bipolar. I was put on some meds and I felt relief in the diagnosis. But I did not reach a state of remission until 1 year later when I was institutionalized again. To answer you question...the wrong diagnosis made me confused and feeling like a failure. The right diagnosis gave me a sense of peace and actually empowerment. I felt like a survivor of my illness instead of a failed psych patient.

Alexis said...

Personally, I don't pay much attention to what the doctor/therapist puts on the insurance form. The goal there is to somehow make you fit one of the categories that insurance will pay for.

I do care if they start talking diagnoses in the session. Therapists can start sticking you in a box based on that label. I had a therapist once who decided my main problem was OCD, and subsequently insisted on seeing everything else as a sub-problem of that. I'm no mental health professional, but I knew enough to know that even if I did have OCD (debatable) it wasn't what was causing me problems at the time.

I have a complex relationship with diagnosis. On the one hand, I want a name for how I feel, and I've never been entirely satisfied with therapists who say "It doesn't matter what we call the problem." It does matter. On the other hand, I don't really want to be boxed in, either.

From what I've seen, all personality disorders are stigmatizing, not just borderline.

Anonymous said...

In my experience, the label causes harm in that any time you don't fit into a medical diagnostic box, because you have that psych diagnosis, the physician stops looking at alternatives and calls it stress. I have a strong family history of depression and carry that diagnosis. I had a hypertensive crisis with chest pain that was found to be "non-cardiac" in nature. The attitudes of the providers changed as soon as that was decided. I became what many medical bloggers call "crayzee". My PCP tried to call it stress and I explained why it couldn't be. My psychiatrist immediately identified it as serotonin syndrome. When I went for cardiac follow-up, the NP who saw me said she doubted that was the case. I also carry a diagnosis of cognitive decline. No one had found a reason for it but it showed up clearly on testing and my PCP was writing that and depression on disability forms. When I was in the hospital for the cardiac thing, I noticed that I could breath better. I had the gas guy and the plumber come look for problems. There was a pipe in my house that went directly into the sewage system and was not capped and the symptoms of hydrogen sulfide poisoning are the same as my cognitive issues. I'm not saying that my doc or the neurologist should have figured that out, but no one suggested that I look for an environmental connection. No one went any further than "oh, it's your depression". Unfortunately, it's apparently too late for the cognitive effects to reverse, but having a non-psychiatric reason hopefully will change how physicians respond to me in the future.

Rach said...

I'm lucky in the sense that I don't have to deal with an insurance company that requires a diagnosis in order to give me coverage (or deny me coverage, I suppose).
But having the various labels I've collected over the years has hindered my ability to get accepted to programs I've wanted to participate in (ie: you have a mental illness - we don't think you can do X,Y or Z.)

I don't think of the label so much as I think of the day to day symptomatology that makes up my existence. Sometimes, though, I do go back to the DSM and wonder where I fit into that big book.

Anonymous said...

I was mislabeled bipolar after a bad Lexapro trip four years ago. This resulted in the following concrete, quantifiable losses:

1) Two long time friends who simply stopped communicating with me after hearing the diagnosis. No e-mails, no calls, no response to my e-mails and calls.

2) One long time friend who finally stopped communicating with me due to my refusal to "accept my diagnosis" and take drugs as prescribed.

Mind you, each of these three people had been a close friend for over 15 years and had never suggested I might be mentally ill until a doctor conferred that label. Then it became irrefutable gospel.

3) One major professional opportunity lost because one of the aforementioned ex-friends told the person who was going to hire me that I had bipolar disorder and refused to take "meds."

4) One major professional opportunity lost, because, in the final vetting process, I was required to fill out a disclosure form including a question about any mental health diagnosis in the previous 10 years. And I wasn't going to lie.

I had been personally recruited for both of these professional opportunities by the hiring official. The only thing that changed from the time of my recruitment until the time I got the "thanks, but no thanks," was that the person who recruited me learned of the "bipolar" label.

Either one of these opportunities would have resulted in a significant ($15,000-$17,000 annual) increase in salary, which, in turn, would have significantly improved my retirement fund. Because I'm in my mid-50's, I'm not likely to ever recover that loss through future salary increases.

The label alone can do massive damage to a person's life.

Anonymous said...

I will agree a lot with what has already been said. Many times you HAVE to keep your diagnosis a secret, or lie to keep friends and jobs.
I too lost what I thought was a close friend after disclosing my dipolar disorder. They stopped calling, communicating, not coming around, not answering texts, phone calls, emails... it hurt.

In The Pink - I loved your last line -"The right diagnosis gave me a sense of peace and actually empowerment. I felt like a survivor of my illness instead of a failed psych patient."

I couldn't have said it better.

Anonymous said...

That should read "bipolar" not "dipolar" yes, I did take my psychotropic drugs today. ;-)

LOL

laurablaney30 said...
This comment has been removed by the author.
Anonymous said...

Getting diagnosed as bipolar was really traumatic because I had a relative who was and she has always been unhappy and had killed herself. However, I was pretty bipolar at the time, so it eventually helped me to know and get better. Many years later I became very psychotic and was given the diagosis schizoaffective disorder. This was really scary since it has a more severe prognosis and the term was a little scary to me (even the mentally ill are not immune to having internalized stigma). Having had that label caused me to question whether I was good with people and whether my illness had impacted that. In some ways maybe it subtlely made me thing less of myself--fortunately not permanently. Also, one time I read a former pdoc's notes and he mentioned that in addition to my main disorder I had an Axis II personality disorder. I felt this more a reflection of our relationship. It turned out that some of the personality characteristics which might have contributed to the diagnosis changed when medicated. So the diagnosis had the potential to hurt by explaining away something which could be treated. Diagnoses are a HUGE deal; they carry a lot of meaning and have the ability to impact lives, including one's outlook in significant ways!

Hannah said...

A five-minute consultation with my first psychiatrist resulted in BPD.

(The fact that I was only 21, had been studying abroad until then and had had to make trips back in order to care for my dying father apparently had nothing to do with my distress - she acted surprised when she heard he'd finally passed a few weeks later: "Oh, so that was true." Gee, thanks.)

With that diagnosis I ran around for years trying to find some therapist or counseling that wouldn't focus on my 'instable relationships' (you know, that seven-year-one with my partner, for instance) and other stuff they were reading into me, until I finally – after four years of just going through the motions and trying to finish my studies while being depressed and dealing with an ED – finally found a therapist who referred me to inpatient treatment.

It saved my life, but the BPD label (which has been rejected by therapists ever since) and the ED/major depression labels still haunt me sometimes, e.g. when I am going to see a doctor for a physical illness and they just go, "That's psychosomatic."

It's hard not to feel bitter when you have to argue every time to just have a minor issue checked out. I get it, on some level, but I'm not the type of person to see a doctor regularly, so when I do once a year, would it hurt them to just treat me like any other patient?

PS: The big inflammation in my jaw bone was totally psychosomatic, too. Being in constant pain didn't suggest an x-ray would be in order… why, she's a psych patient, so she must be making it up. Right? ;)

Anonymous said...

I understand that psychiatric diagnoses are helpful, in a broad spectrum way, for billing purposes and also for treatment goals and processes. But as my diagnosis changed from Generalized Anxiety Disorder to Major Depression to Bipolar Disorder II, my insurance company started contacting me a lot more frequently. I believe the label was one of many factors in my finally leaving the workplace.

Anonymous said...

As others have pointed out, it's not so much a diagnosis that's problematic as a misdiagnosis. And when there's pressure to come up with a diagnosis now, or it won't be covered, the chances of a misdiagnosis tend to be higher than if you don't make a diagnosis until there's sufficient evidence of what the problem really is.
It's particularly problematic with personality disorder diagnoses. I believed for a long time that I had a personality disorder, although I'm now fairly sure I'm on the autism spectrum. (When I mentioned this to my psychiatrist, she just said that she's not a developmental psychiatrist, so she wouldn't know.) A major problem with the assumption that my problems were caused by a personality disorder was the fact that things like "if you're afraid someone is upset with you and you don't know why, it probably doesn't have anything to do with you" is common therapeutic advice for someone with a personality disorder. For me, this was akin to telling me to forget everything I'd worked very hard to learn about how to deal with interpersonal situations. Needless to say, it blew up in my face. I was ignoring signals that would have been blatantly obvious to someone who didn't have trouble recognizing them, while believing that what I was ignoring was just in my head.
Once there's a diagnosis, there's a tendency to interpret symptoms in the context of that diagnosis. That's harmful if the diagnosis is wrong or if there are other symptoms that aren't related to the original diagnosis. (After all, sometimes hypochondriacs get cancer too.)

Anonymous said...

This is what is so frustrating to me - doctors see their diagnoses as harmless ways to get paid and do not think of it from the patient's point of view. Here are some ways that your diagnoses can SERIOUSLY negatively affect a person's life:

1. A simple bipolar diagnosis can preclude people from getting an organ transplant if the surgeon in question happens to have bipolar disorder on the list of exclusion criteria

2. A simple bipolar diagnosis can mean a patient is turned down when trying to adopt a child.

3. There is a substantial body of social science literature showing that a diagnosis of borderline personality disorder seriously negatively affects the subsequent treatment (both medical and psychiatric) a patient may receive. It also has very negative consequences for patients' access to treatment because many providers would rather quit than have to treat someone labeled "borderline". (P.S. because BPD is such an incredibly stigmatizing diagnosis, I believe psychiatrists and other providers should be particularly careful about not calling patients "borderlines" - they are people who have been given the diagnosis of borderline personality disorder)

4. A diagnosis of BPD can seriously negatively affect self-esteem and, in and of itself, cause depression.

So, as you can see, there are many ways psychiatric diagnoses can negatively impact patients' lives. Labeling someone with a psych dx is not an innocuous, benign act. It may seem that way to those who do it all day long every day, but it is not. The sooner the psychiatric world realizes this, the sooner it can engage in harm reduction.

By the way, no one ever said "psychiatrists should work for free." This was supposed to be a discussion about how labels affect lives. I feel that statement was a provocative distraction from the real issue.

Dial Doctors said...

My name is Laura and I work for Dial Doctors. I am not a doctor at least not in the GP sense of the word. I’m a clinical psychologist and I’m bipolar. While I do practice, I handle social media for Dial Doctors. My comment does not necessarily reflect Dial Doctors' position but I will comment on how I was treated when I started working here.
As I was growing up I always knew I was different. My family was different too specially my dad. I learned the symptoms of mania at a very early age (around 4) and I kind of understood depression too. When I was 14 I tried to kill myself and then I was diagnosed. I can't explain how free I felt. It wasn't my fault that I was depressed at times and that I couldn’t seat still the next. I quickly learned that it wasn’t my fault but that I was definitely responsible if I deteriorated. I started keeping a mood journal as well as stable sleeping habits which significantly improved my life. I can honestly say that every time I’ve had a ‘crisis’ as I affectionately call them it’s been because I haven’t complied with my meds or my sleep schedule. I say this because when I have followed doctor’s orders my life is completely normal. Granted most people think I talk too much but other than that I’m good. A label has never once made me feel ashamed or hurt except when I was shopping for insurance and I was denied by several companies.
Then I heard Dial Doctors. Please don’t consider this as shameless advertising because it’s not. I needed some sort of health care and I didn’t know where to turn. A friend told me about Dial Doctors and I figured it wasn’t costly and I got discounts on meds which is probably my biggest expense. I also learned they were hiring and I tried to apply to be one of the doctors on the phone. I was honest during my interview and even brought information on bipolar disorder hoping they wouldn’t hold it against me. Just like every other understanding superior who I’ve had, the boss told me he didn’t care. He asked if I was willing to work hard and do my best and that if I was then that was all that mattered to him. Unfortunately, legislation on psychological telehealth is still being drafted so that would have to wait. He offered me my current position because I did a minor in advertising and the boss liked me.
I can’t deny that certain diagnoses are usually considered troublesome like BPD. People with personality disorders, especially BPD, have a harder time coping with everyday situations or medication. THIS DOESN’T MEAN THAT IF YOU’RE BPD YOU DON’T COMPLY OR ARE A DIFFICULT PATIENT. This opinion comes from years of study and practice. However, any good psychologist or psychiatrist doesn’t discriminate because of your label. We are more than just bipolar, depressive, borderline, OCD... That’s just a very small portion of who we are.

Steve said...

The real problem with labeling is in the process, not the label itself. If the label is truly viewed as a way of getting insurance reimbursement, I have no problem with it. But what I observe (and I am a mental health professional now employed as an advocate for foster kids) is that when professionals take these labels too seriously, they begin to think they know more than they do and fail to look at the causal factors behind the labelled behavior. In particular, I see a lot of traumatized people (especially foster children) whose behavior and emotional reactions are ENTIRELY UNDERSTANDABLE given the context, but they are easily dismissed as "bipolar" or "ADHD" or "psychotic disorder NOS." Their actual issues are rarely explored, and even medication side effects are attributed to the child's or adult's "disorder" rather than anyone bothering to ask the client WHAT THEY ARE TRYING TO COMMUNICATE OR ACCOMPLISH with the behavior. I often see even medication side effects passed off as a consequence of the child's "disorder" rather than attributed to the medication so that adjustments can be made.

So no, labels in themselves can't do any harm, but how we use them sure can. Labels make it easier for us to dehumanize ourselves or our clients, and can create a loss of the internal locus of control that is so critical to long-term recovery from mental and emotional distress. Generally speaking, I think we're better off to minimize their use and focus instead on supporting the client in coming up with their own description of their distress and possible paths to its resolution.

Paxton said...

hi, i know this posting is several days old, but i wanted to contribute to it.

i am 25 years old and have aspergers syndrome. i (and my doctor) believe that this is the correct diagnosis for me.

one of the problems that can come with autistic disorders is an intolerance to specific foods, such as dairy or gluten/wheat products.

when i was younger (in my early teens, so maybe 13 or 14 years old), i stopped eating these foods completely. i began to get relieve from my upset stomach. because a lot of the foods i was previously eating contained dairy and wheat products, i also began to lose weight. this was not something that i noticed.

i had been seeing a psychiatrist who was prescribing my anxiety medication who believed that skinny + teenager = eating disorder.
i am not saying that i was eating very healthy, but i was taking foods out of my diet that were making me sick, not taking foods out to lose weight.

before i knew what was happening, i had been labeled as "anorexia nervosa" and was admitted to the hospital and put on an eating disorder unit, where i remained until my weight was 108 pounds (that was their goal for me). the problem was, i got there by eating mac and cheese, full fat milk, creamy salad dressings and soups and butter on everything.

so i went home, and ate the way i was eating before (mostly fruit and veggitables and steak) and lost the weight again.

my weight went up and down for years and i eventually got a feeding tube surgically put in my stomach (which i still have, and use at night for hydration purposes).

when i was diagnosed with aspergers, we (my parents and i) learned about the food intolerances.

unfortunately, all these years later, if i doctor wants my records and gets my files from the children's hospital where i was treated by various specialties as a child (i have had spastic diplegia since i was a child and was treated by neurology and orthopedics, as well as PT/OT), no amount of explaining ever convinces someone 100% that i did not have anorexia nervosa because it was written down in my file.

the doctor who diagnosed me with aspergers even told me and my parents i did NOT have anorexia nervosa but it still follows me, at least on paper, anyways.

during a hospital stay after surgery on my leg, i woke up to a nurse attaching my g-tube to a bag of some sort of calorie boosting drink (ensure, maybe?)... the doctor had ordered it after seeing anorexia nervosa on my chart from the children's hospital and told the nurse to keep an eye on me. oy.

when i explain that i have aspergers and may need someone to repeat something or show me something in a different way, people are glad to help me understand. if they think i have anorexia nervosa, they think i am only trying to manipulate them.

i also want to say i don't think people with eating disorders are bad people, but people with an illness that needs to be treated. it's just not the illness that i have. it would be like treating someone for cancer when what they really have is cystic fibrosis.

labels are not bad, but they need to be the correct labels, and people need to remember that there is a person under that label.

Erin said...

First off, I want to say that as a patient blogger and future child psychiatrist, I have thoroughly enjoyed your podcasts and blog. After discovering it last week, I have listened to nearly every episode. You three are like wonderful friends I've known for years already!

Let me start off by saying that my primary diagnosis isn't a psychiatric disorder/illness. Rather, it's cerebral palsy (spastic hemiplegia with the right side dominantly affected), but I do have a few issues that are sort of secondary to CP. One of those is mild (unmedicated) depression, which has just been discovered in the last 6 months.

I'm a sophomore in college, so it's been interesting for me to learn to share with my friends the reasons I sometimes get randomly upset, teary (I mean, come on. Crying like the goldfish died while brushing your teeth in front of the mirror means something's up. You don't have to be a rocket scientist.) However, with all of my diagnoses (mild psychiatric or not -- there are four) have given me a new appreciation for life, the ways that I and others live life, the choices we make, the things we say, and the things we do.

I'm so grateful that even though my primary diagnosis is cerebral palsy, it does have a name. It brings with it a sense of belonging. And as a patient blogger, I'm honored to be able to share my story with others with CP, with parents of children with CP and similar conditions, and others. Giving something a name makes it personal. I feel as though it gives patients the freedom to make of their condition what they will. They can laugh about it, cry about it, and throw things at it if they wish. Because it's a name. An animate object.

Personally, it's the best thing to ever happen to me, and I wouldn't trade it for the world. Here's a post that I wrote not too long ago that goes into more detail.

Again, I've really enjoyed discovering you guys and can't wait to read and interact more! Thanks for all that you do and the influences that you are!

Anonymous said...

"The real problem with labeling is in the process, not the label itself."

I disagree completely. The label itself can cause serious negative consequences including loss of friendships, loss of professional opportunities, loss of licensure, loss of the ability to obtain health insurance and loss of civil rights.

"If the label is truly viewed as a way of getting insurance reimbursement, I have no problem with it."

I do have a problem with it. I think giving someone a stigmatizing label with questionable diagnostic validity in order to get paid borders on unethical, at best. The label itself is damaging. At the very least the patient should be given some disclosure, along the lines of: "Because we've only talked for an hour, I don't know enough about you to be entirely sure what's going on whith you. But I'm going going to give you a label of bipolar disorder so that I can get reimbursed for my time by your insurance company. Once I give you this label, it's going to stick to you for the rest of your life. It will stigmatize you among society at large. It could also lead to loss of job opportunities, friendships, civil rights, licensure, insurability and other things to numerous to mention. Studies have shown that the quality of medical care you receive from other providers will decline, because your symtoms will be attributed to either drug-seeking behavior or somaticizing. Plus, your self esteem and sense of personal autonomy will pretty much go down the toilet."

The disclaimer for a diagnosis of Borderline Personality Disorder would have to be even longer.

I just don't think very many patients would sign off on this, if there were truly informed consent about what psychiatric treatment sometimes entails.

Anonymous said...

Because of a bipolar diagnosis, I was put on a 72 hour hold at a hospital where I checked myself in. The psychiatrist stated that he put 72 hour holds on every single bipolar patient so they can't leave later AMA. He made it clear that the diagnosis was the reason for the hold, and no other reason. I have never been put on a hold at any other time when I was voluntary.

Anonymous said...

Ask the Federal Goverment if having a psychiatric label can be detrimental to one's career, say having and keeping a CDL (Commercial Driver's License). I've driven an eighteen wheeler for over 19 years this includes almost 1.8 million miles without so much as a speeding ticket or accident. Labels can destroy careers and can promote victimization.

Anonymous said...

Doctors sometimes get stuck on a diagnosis and will not see anything except what confirms their diagnosis, right or wrong. An incorrect diganosis/label has greatly affected my ability to be employed in my profession, worsened my self esteem and subsequently my quality of life, my pocketbook (treatment not covered by ins.) and now my ability to get health insurance. Story: At times over my life I got depressed for short periods, Winter mostly, and also suffer from self esteem problems. After an unexpected pregnancy I became very depressed and my husband traveled extensively. Went to a doctor and trusted my life to her for years because I wanted to be the best that I could for my family. One year we lost a huge amount of personal money ($100K, our tech business was in danger of failing (150 employees,) and moved twice while going through menopause. I had trouble falling asleep, not trouble staying asleep, and was distraught. She changed my diagnosis to Bipolar II. Trusted her because I wanted to be a good patient and a good mom and wife. Over the years I noticed that she LOOKED for anything i said to corroborate that diagnosis. Again severe anxiety occurred when something happened with my son. No problem sleeping but worried all the time about legitimate problem.I had no confidence but whenever I mentioned to her that the med was making my thinking stiff or that I had doubts about the diagnosis, she'd tell me that someone like me had to take meds. I had doubts but always left her office thinking - yeah, she's right, I am a sick person. If only I had listened to my husband and gone to someone else. $110 a visit out of my pocket for 17 years. I don't think that she was trying to do me harm or take my money but I also think that she did me more damage than good all those years. She sapped my confidence. During a stressful time last year I went to a counselor because I had doubts about her and she only prescribes meds. I wanted to learn how to change my thinking to alleviate anxiety during super stressful events. 3 visits w/ counselor= huge difference. Saw a different psychiatrist. He took me off meds and said I wasn't even on a high enough dose to be therapeutic! Been off for a year. Confidence back now that I am not labeled "sick" because I don't see someone who tells me I am sick every couple months. My thinking is clearer off her meds. So stupidly at age 50 I accepted that bad diagnosis and it took me years to get the confidence to get a second opinion because I trusted her. I guess I became dependent on her sort of. She kept telling me there was something horribly wrong with me. Gradually I realized and thought, "How could I have been so successful in life with education, jobs, medals, awards, friends, and be as sick as she told me? How could I have such a well-rounded successful child if I was such a sick mom?" What can you do about a psychiatrist that makes an incorrect diagnosis? There are not x-rays for psychiatric diagnoses; nothing objective. I was brow beat by a psychiatrist that only saw what fit her diagnosis. Seriously, if I smiled in her office she thought it was symptom of hypomania. She had me convinced to start seeing hypomania or depression in everything I did.She was useful post-partum but I trusted her and became kind of dependent. Luckily we could afford this misspent money. But what about health insurance and the lost years of confidence and self esteem?

Trébuchet said...

GP said anxiety

Shrink said PTSD (made sense, but he couldn't treat me while I stayed in my situation so only one year with him. Nice guy, though; gave me tools. I'm to go back when my stresors are dead.)

pDoc 1 said no mental disorder whatsoever (said I was healthier than him, and just wanted attention. —He didn't note that I was calm and content because of benzos!)

pDoc 2 said depression (I had zero symptoms: lots of energy, hope for future, etc); but he said he didn't believe in "anxiety" except as a symptom of depression. I supposed he might have been onto something. He kept me on benzos, and added x-drugs (ambien, which gave me hives; lunesta, nice but expensive) so I'd sleep more; and beta blockers to slow my heart rate (which had been 140bpm resting for a few years). Not too bad.

Then after 9 months, no changes or bad side effects, he changed my diagnosis code without telling me to Major Depressive Disorder, and changed my meds from 3mg/day lorazepam to 3mg/day Xanax.

Yes, raise your eyebrows: I looked up MDD, and it's not even close to my symptoms! In fact, pDoc knows that, or he wouldn't give me tranquilizers (according to wikipedia)! I questioned him, and he said he was worried about a malpractice suit.)

I wouldn't mind the diagnoses if (1) any of the docs agreed on one! and (2) if pDoc weren't lying to the insurance company, because it seems unethical.

I'll tell you this: I trust a GP and a shrink with diagnoses far more than I trust a pDoc, since apparently pDocs alter their diagnoses to cover their asses, not to HELP you. Shame on them.

Anonymous said...

Hi, I am diagnosed with Skizophrenia and that has kept me from joining the marines with my friends and made me look like an outcast and very depressed. Though my doctor just wants to keep the diagnosis so he can keep having patients. I have shown no signs of phsycoits and no signs of aggression since one incedent six years ago.

Anonymous said...

I think labels are very damaging. I am a doctor and I know for a fact that if borderline personality disorder is on your chart you will be treated in a very different manner then those without that diagnosis We were told as medical students to let the boderlines wait out in the waiting room when they were suicidal because they would just calm down and go home. I know that many doctors will not take boderlines in their practices. I think it is a shame but labels really do effect the care a patient gets

Anonymous said...

A friend stopped talking to me after my 5150 and called me a year later just to see if my phone number still worked. She said she had assumed I would have killed myself. I was told there would be no criminal record but all the police know I went in on a 5150. Some have made fun of me for it.
Doctors completely change attitudes if I talk about mental illness. I'm being cyber stalked and am taunted because someone seems to know my medical records. My condition has never been discussed with me, psychiatrists seem to not like to discuss mental illness with their patients. I have never had my diagnosis discussed with me. Psychiatry is more of a religion based on beliefs and judgments. 5150 is the same as Spanish Inquisition. Why can't they just roll the few labels they have over into neurology and give up their damaging profession? Thanks for letting me vent. The damage that is done by psychiatry is unbelievablel

Anonymous said...

I couldn't help but recall this blog post when I read this article in the New York Times:

http://www.nytimes.com/2013/08/06/opinion/lawyers-of-sound-mind.html

If you don't think the diagnostic label itself is damaging, just read the article and the comments. Especially some of the comments....

Blaine Bouvier said...

I have a project I am trying to get traction for. I am making a documentary called "Labels" which will address how labels placed on people by society is harmful. Bully, victim, or target are labels applied to children, and it's harmful. These labels also apply to other areas besides just children. Criminals, School Labels, Homeless, Sexuality, etc. Please, if you can help raise funds to make this project get traction, the kickstarter project is here:

https://www.kickstarter.com/projects/binarycpu/harm-with-labels-including-how-society-contributes/

If you can't donate, I understand, but PLEASE share this with others. It's time to break down these labels and see the real damage done.