Wednesday, May 16, 2012

Love, Labels and Lies



"Hi. My name is Susan and I have been diagnosed as Bipolar 1, ultra rapid cycler. I've been on over 50 different med cocktails, seen over 30 psychiatrists, and had ECT. On a scale of one to ten, I am feeling about a five tonight. Flat. Sleepy. I'm happy to be here tonight."

So the check in continues in my old support group. Name, diagnosis. Meds you are currently on. How you are feeling, how the meds are making you feel. And so on. Pass the card to the next person. 

First order of business. Make sure no one feels suicidal, makes sure everyone feels safe to share. And then talk of what is going on with our lives. Work issues. Family issues. Medication issues. Sex. Anything or everything.

Sounds good in theory. But here's the rub. As the group went on for years, and people grew comfortable with each other, something happened. A p-doc change because of a new job and a new insurance company. All of a sudden, the gal sitting next to me who has been "Bipolar 2" is now "Bipolar NOS". What is this? The guy who has been labeled "Schizophrenic" is now "Bipolar 1". The college student who was previously labeled "ADD/ADHD" is now "Schizoaffective, and OCD".

What gives?

Two things actually. One thing, the easier one to grasp, is what has happened to me. A medication on your cocktail gave you some funky side effects. You never felt paranoid before, but now you do. Once that medication stops and is out of your body, the paranoia is over. The label remains. In my case, a pharmaceutical made me hear voices. I mentioned this to my doctor and saw my Axis I definition changed from "Bipolar 1" to "Bipolar 1 with Schizoaffective disorder". It went away after I was weaned, but to this day, the permanent side effect is I need my iPod with me 24/7 to concentrate, listening to talk radio or books on tape. If I don't have something in my ears with this type of white noise, my brain will not function.

My label changed. Not a big deal. It's been changed in the past. Almost every p-doc I have ever seen has changed it.

Here's the truth. You go to a new p-doc. They spend the first meeting or first two meetings asking you a deluge of questions. Based on the way you answer, and the knowledge of the p-doc they give you a label based on your questions.

The first time I was evaluated my p-doc had the DSM III. I was evaluated by an overworked medical student following a suicide attempt in the ER department, right before I was sent inpatient. That label was "Depressed". I was also labeled "Suicidal" and spent two weeks on a 1-1 suicide watch, eventually graduating to a 1-15 and then finally joining the rest of the hospital. When I was deemed well enough to get off that 1-15 and join the rest of the hospital patients, I got a new p-doc. He spent close to three hours with me and gave me a new diagnosis. "Manic Depressive". I stayed with this doctor for six years. By the time I left him because of a new job and insurance, the DSM III-R had come out and my new diagnosis was "Bipolar". He assured me it was the same thing. I understood. I had many psych courses in college, both undergraduate and graduate. I remember Schizophrenia was called "Dementia Praecox" at one time.

That's all well and good, but my old support group was really hung up with labels. One girl came in hysterical one night that she was no longer straight OCD, she was now diagnosed as a Borderline on top of it. As soon as she said it, I saw her friends, who previously liked her, now distanced themselves from her. Indeed, I know a therapist in real life who refuses to see anyone with that label. EVER.

Here's what I think about labels. Unless you are shopping for consumer goods, labels don't matter. A label is something a doctor throws on you, whether it's psychiatric or other so he has a number to submit to the insurance company to get money from your visit. It shouldn't define you.

Here's my labels. Susan. SWF. Forty something. Educated. Blonde hair, blue eyes. Very zaftig. Short,( five feet tall). Flat feet.

Diagnosis- lost my way in the maze of life following a bad relationship, and currently unemployed, I feel lost, adrift. I am searching for something to give my life meaning.

Yes, I am different than most people. I have a creative brain, not a scientific one. I overthink things. I feel things differently because of the creativity. Yet, I am no different than anyone else. Yes, right now I am sorely depressed. Melancholy. What ever you want to call it. I've lost my way.

Those are my labels. I think they help me define me much better than the labels my p-doc has given to me over the years. Bipolar 1, Manic Depressive, Schizoaffective, Schizophrenia. I don't think of them and I don't let them get me upset .Because I won't let the illness define me. I let me define me.

That's the sad part about my former support group. Though it means well, people never got passed the labels, and they let them identify them as people. They shouldn't. Let the doctor and the insurance company sweat them. You are a vibrant, wonderful, unique person. Your label is your name. But owning that, is the first step to achieving wellness.

And that is what everyone wants at the end of the day. To be well again. 

15 comments:

Cheryl said...

Susan, it's almost as if I asked you to write this today. This morning I was having an argument with my therapist over text messages as to whether diagnoses were useful for anything other then billing. Because she treats PEOPLE, not diagnoses, and a person's treatment plan should be tailored to that PERSON and not change just because the arbitrary number next to their name changes. She disagrees, and when she decides to explain herself more fully next week, I'll let you know. In the meantime, I've sent this to her, as well as a handful of people from my support group, which very thankfully is nothing like the one you describe!

Debra Ann Elliott said...

Thank you for sharing. I'm stopping by from the Mental Health Month Blog Party.

susan said...

Hi Cheryl,

Wow! Synchronicity at it's finest! While I understand ISN 9 and 10 codes are necessary for billing, they don't or shouldn't reflect on the patient. Too often I;ve met people who identify by their diagnosis, and use it to identify themselves like people used horoscope signs even as pick up lines.

I didn't go into how the new proposed changes for the DSM V will change diagnostic labels.

I just think labels belong on the goods we buy, they don't belong on people.

susan said...

Hi Debra!

I was honored to get an email to participate in the Mental Health Blog Party. I really enjoyed writing this and made a note on my calendar to think of something for next years blog party.

Marci said...

I saw this link from the Mental Health Blog Party. I really enjoyed this post and have taken years myself trying to see past the label. Look forward to reading more.

mm172001 said...

I can't get RSS feeds. My e-mail is through hotmail and I blog through wordprees, do you know A way I can subscribe?

susan said...

Hi Marci,

Thank you for stopping by. I just made a cup of coffee, and have the rest of the day free to read the blogs from the blog party. I've noted to make sure to read your blog!
Thank you for stopping by.

susan said...

MM- hi,

I know Firefox uses RSS feeds- at least they do on my Mac version. I have a template to add a mail subscribe list, and I need to figure it out and add it.

I am such a Luddite when it comes to blog design. Probably why I wish I knew more, so I can update the entire blog's look and organization.

I've subscribed to your blog. Very impressive. We have a lot of experiences in common.

Anonymous said...

Susan - you are such a talented writer that I don't know if you are writing about you or me. Great window into the struggle.

lost, numb...lost...

Anonymous said...

Sometimes I find myself thinking about my brush with psychiatry and the diagnoses. It's been 10 years since I realized the travesty of it and jumped ship to freedom. I am not a diagnosis some person gives me. I needed to read what you wrote today...it's serendipity.

I appreciate your description of being lost and not finding your way....it makes much more sense.

Unfortunately psyche labels can follow one around and still cause problems. That is is the sad part.

Lorii Abela said...

Thanks for sharing this. I have got a lot of things to learn and love the way you write.

Sid said...

I certainly don't think any diagnosis (physical or mental) should define anyone, but it is still critical that a correct diagnosis is made so you can get the most appropriate treatment. I think it does a huge disservice to anyone with a mental illness to just throw some random diagnosis at them and then say the pdoc is just using that one so the insurance company pays the claims.

We're told not to put much thought into the diagnosis, but would anyone say that to someone with a physical illness?? NO. You'd never tell someone who has a broken arm that it's no big deal, just suck it up. You'd never tell someone they have cancer and then tell them it doesn't matter which kind cuz most cancer treatments are the same

A lot of people with mental illnesses have a difficult time of not internalizing a label that's been thrown at them. Our minds tend to believe the negative and when we're told we're bipolar or borderline or what have you, it just validates all the negative thoughts running through our heads. Be it worthless, hopeless, defective, incurable, etc., the more diagnoses that get tossed your way only solidify those thoughts.

There's got to be a way to diagnose mental illness that isn't as incredibly subjective as it is right now. Just my 2 cents!

Kelly Menzies said...

You are right not to allow yourself to be defined by a label.

I believe I narrowly avoided a nervous breakdown a few years ago. I friend took very good care of me and I avoided the doctors liked the plague. If I had told doctors what I had exerienced I was have been given a psychiatric label.

Well I changed my lifestyle and all the stress that led me to the point and I am now free! I am happy and at peace.

However, I am left feeling such anger at the way we create people in crisis. Diagnosing, labelling and psych meds don't lead to a life of freedom in my opinion.

Kelly x

Adam Alvarado said...

Ah! this stuff actually angers me. I don't understand it. Cause it's obviously more than just a label to the docs. And to the patients it becomes something of an identity, as a reason for their problems or whatever - that they're X and not Y, or a little more Y than Z. Like why can't they just treat the person, the problem, and not the label? Obviously cancer needs to be treated as cancer not aids, and a broken foot as a broken foot and not a heartattack. But with the mental diseases it seems like they're all so nebulous that the proliferation of labels does more harm than good, or just nothing at at all, like trying to cut up a cloud or something. Love your site though, and learning a lot!

anxious girl said...

I'm so fed up with being diagnosed differently at first i was relieved but now i have a list of issues under my name and i feel like a problem person and very messed up, i've been diagnosed with anxiety, PTSD, depression, ocd (eating disorder) agoraphobia and separation anxiety, and i still feel as if i haven't been diagnosed right, from all the research iv'e done i think i have bipolar but when i mention it to professional they keep littling my symptons xx

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