05. Stigma
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05. Stigma
Everyone has a story, a voice and a set of circumstances that have shaped their life experience!
Bill described that the worst thing about being homeless was not the cold and not the hunger. It was the fact that people walked by him and looked down at him like it was his fault.
Ben from Preston, UK
Stigma: Enabled by a label. How do dignoses happen?
So, before I begin writing about mental illness, I thought you should get a little context.
When I write about mental illness, I will be writing based on illnesses typically diagnosed by mental health professionals (although PCPs do it, too). So, you should probably know a little bit about diagnosis.
How does anyone know they or someone else has a mental illness? Setting aside the obvious epistemic problems, mental illnesses are diagnosed by trained professionals. While some people “diagnose” themselves or others after a Google search or a trip through Web MD, diagnosing actually takes training.
Mental illnesses can be diagnosed by a broad range of people with different types of training. The mental health professional you see may call themselves a counselor, therapist, counseling psychologist, clinical psychologist, licensed clinical social worker, psychiatric nurse practitioner, or psychiatrist (MD). Training in diagnosing and treating mental illness varies, but what we all typically use in the United States when diagnosing is the Diagnostic and Statistical Manual of Mental Disorders (DSM)
I was trained under the DSM-IV-TR but the DSM-5 will be completely rolled-out and in use by Fall 2014. Essentially this giant (900+ page) book details out the criteria for each mental illness (along with other helpful information). I won’t go into the process of creating the DSM-5, but you should know that it is the product of the American Psychiatric Association and heaps of "expert committees" which include both psychologists and psychiatrists. That said, it tends to follow a medical model for understanding mental illness. Because we use a manual people tend to believe that diagnoses are objective - basically clinicians check boxes on a list and if the client has enough checks he or she gets a diagnosis. Unfortunately, it's not so simple or objective.
Diagnoses are typically based off of information gathered from the client, but sometimes we use information from family, friends, teachers and other clinicians (if the client says it's okay to talk to those people). If you see a mental health professional for the first time, you will likely experience a session called an intake. It is a very nosy time in which the clinician asks you a series of personal questions. Intakes help the clinician better understand you as a person, but they can also be used to help the clinician learn about your symptoms. This evidence helps the clinician critically think and it guides further questioning; this is all in the hopes of determining what diagnosis you may have. Sometimes all these questions aren't enough and the clinician may decide that assessments (psychological tests) would be helpful in making things clearer.
Diagnosing is both a science and an art. There are studies to support the use of these DSM criteria to make a diagnosis, but it takes skill to weed through discussions to find which criteria fit and which don't. For example, clinical judgment is used to determine if hearing voices is evidence of an auditory hallucination or if it is a culturally accepted phenomenon which should not be pathologized. Because an accurate diagnosis requires an understanding of the person and their context, many clinicians do not make a formal diagnosis until after several sessions with the client. In the end, diagnoses change. Some get added; some are removed; some are clarified. Most people don't fit the criteria for a diagnosis forever.
But note that if a diagnosis enters official documentation, that diagnoses can be seen by anyone with access to that document (insurance companies for example), and unless all copies of that document are destroyed – that diagnosis (even if later is deemed inaccurate) can be seen by others. This fact alone makes some clinicians wary of making some diagnoses - these things stick with people and the stigma sticks with them, too.
There are other worries about diagnosing people. Some counseling theories, for example, argue that diagnosing people pathologizes what they’re experiencing. When you say someone has a mental illness, it’s not uncommon to think that there is something “wrong” with that person. But that may not be the right way to look at it. Some theorize that “mental illness” is the manifestation of problematic/dysfunctional thoughts/feelings/behaviors that are the result of dealing with oppression, stress, or trauma (to name a few serious life obstacles). "Symptoms" are survival skills people have learned which have now become unhelpful or distressing. The problem is not with the person dealing with oppression, stress, or trauma; but, instead, the problem lies with oppression, stressors, and traumatizers. If we only focus on the person’s “pathology” we fail to see that he or she doesn’t need to be fixed – the environment needs to be fixed.
Even if you disagree that the environment is the primary cause of at least some mental illness, it is hard to ignore the fact that diagnoses are labels, and labels enable stigma. This stigma can be both internal and external to the individual. Often when people think about stigma, they imagine non-mentally ill people forming problematic and prejudiced believes against the mentally ill. However, stigma can be internalized; individuals with mental illness can believe all the awful things others are saying about them. Individuals who internalize stigma have much poorer outcomes than those who don't, but even experiencing external stigma has a negative impact on outcomes.
So, clinicians need to tread carefully when using diagnoses and check-in with clients and their families to see how they feel about that diagnosis and how they are coping. Some people actually feel better knowing that they’re not alone or that what they’re experiencing is real. Others feel damaged and ruined.
If diagnosing is so problematic, then why do it? The cynical answer: because we want to get paid. If a clinician wants reimbursement from a third-party payer, then that payer wants to know that this treatment is for a legitimate illness. Referring to the DSM diagnosis gives your treatment legitimacy and (if lucky) the client’s treatments are covered. Hopefully at least one problem with this seems obvious: surely not every legitimate illness has been investigated and is included in the book.
However, some people see diagnosing as a very important part of the treatment process. How do we know how to proceed without knowing what we’re dealing with? How can I decide between two similar problems my client has without doing a differential diagnosis based on evidenced-based criteria? How am I to communicate with other clinicians if I don't use the shared diagnostic language?
The long and the short of it is that diagnosing is serious business. It has serious implications for the client. False positives and misses negatively impact treatment, and even an accurate diagnosis can be difficult for the client to deal with. While I'm not sure stigma hinges on a diagnosis, I do think that greater awareness about how diagnosing works can begin the demystification process. And at the very least, diagnosis provides a very clear label that makes stigmatizing much easier.
I like how since making it public that I had been living with an illness for some time, it's given me such a good perspective on the people I ultimately want around me.
I'm happy they did that, truly.
Obviously at first, it's sad to learn that some people just can't bring themselves to try and understand mental illness instead of just fearing it for no reason. But it means that the people who have stuck around and come back to me are the ones I can count on for real, solid friendship.
To those who are still my friends, thank you. I love you all dearly & hope you know how much I value your friendship.
Psych privilege is:
Reading Triangles by Ellen Hopkins and not getting pissed off at how many times "crazy" or any permutation thereof is mentioned.
I like Ellen Hopkins' books, but I CANNOT stand how many stigmatized/stigmatizing words are used, not even in terms of mental illness (not that that would make it much, if any, better).
Anorexic is NOT a synonym for thin; schizo is NOT an adjective to describe something that doesn't make sense/doesn't seem logical to you.
Even though it's a library book I checked out through MeLCat, I commented on all the times it used those kinds of words.
I'm too afraid to count to see just how many there are, especially the word "crazy," because it's just going to make me mad as hell--more than I already am just by reading it.
And it's not even like the book was dealing with mental illness, so why the fuck was that necessary?!
"With a MedicAlert ID, physicians and first responders in medical emergencies, including law enforcement, will be able to recognize the needs of individuals living with mental illness and treat them appropriately. This will also help reduce responses based on misperceptions and stigma surrounding mental illness" said Michael J. Fitzpatrick, Executive Director of NAMI.