A Diagnosis is Not a Label – #SoCS

The prompt for Stream of Consciousness Saturday is “close eyes and point.” Grab the closest printed material to you when you sit down to write your post, open it up (if it’s a book, flyer, etc.), close your eyes, and point. Whatever your finger lands on, use that as your prompt. Have fun!

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“Not only had my efforts been misdirected, but I also had to make sense of a new, more foreign label. I saw myself as a failure, a freak, another “crazy” person who belonged in the hospital”

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This is from an article I read in preparation for my weekly SMART Recovery support group (which is court ordered, but which I just happen to love). It’s basically an experiential essay by someone who found that her diagnoses (“labels”) for her mental illnesses were harmful to her.

My personal experience could not differ more from hers.

Now, I know arguing with “experience” is largely fruitless, so I doubt I will convince “Cindy” otherwise, but I think her fear of diagnostic labels for her mental illnesses only serves to further stigmatize her and others who suffer from whatever their diagnoses may be.

A diagnosis is not a label. “Diabetes” is not a label; it’s a diagnosis of a medical condition. Treatable, manageable, but a medical condition nonetheless. I don’t see people shrinking back in fear from “diabetics” because they need daily insulin or weekly dialysis. Perhaps because we understand diabetes as a medical condition and not something that’s “all in your head”? “Bipolar” and “Schizoaffective” disorders are also diagnoses, resulting from scientifically and medically verified imbalances of brain chemistry. If those diagnoses become “labels” that cause others fear, the problem is not the diagnoses – the problem is the social perception (or lack of understanding) of the diagnoses.

To use a favorite quote from a Disney movie song, “We don’t like what we don’t understand, in fact, it scares us” (bonus points if you know the reference). Medical diagnoses serve to add understanding to things which may frighten us, and I think that is especially applicable to mental illnesses because of the outward behaviors which are often manifested by the illness.

Before I completely dismiss what is GOOD about this article, let me make several stipulations:

1. As I’ve already said, experience is experience. If a diagnosis feels like a label and is unhelpful, I can’t argue with that FEELING. (it doesn’t mean the feeling is rational or helpful, but I will leave room for people to feel their feels)
2. If a “label” (or diagnosis) leaves you feeling resigned to “being what you are” and leads you to lean on an “other” (think “higher power”), then it MAY be helpful. I think primarily of my experience at several AA meetings, where the whole point of “labeling” yourself an “alcoholic” is about accepting yourself as powerless and in need of a higher power for success. This works for some people. It did not and does not work for me, but I won’t deny others’ experiences of coming to health and wholeness by using this label.
3. Cindy, who wrote the article, ultimately decides to accept her illness as her “own version of ‘normal'”. I can see the validity here, and it has clearly brought her to a place of peace. Each of us has our own pathway to health, and not everyone is called to be a change agent for society’s misconceptions.

Having given that list, here is where I take issue with how she eventually got to her place of peace. She (mistakenly, in my opinion) allows a diagnosis to become a label. She becomes afraid of her diagnosis because others are afraid of her diagnosis. This is not her problem – it is a societal problem – which is all the more reason to embrace a diagnosis and seek to normalize its existence and its management, treatment, and necessary accommodations.

“Crazy person” and “weirdo” are labels – labels that are indicative of a misunderstanding (or outright denial) or a medical condition. I can’t tell you how many times I have “labeled” someone as “weird” or “antisocial” only to find out later that they are on the Autism spectrum. “Weirdo” is the label – “Autism” is the diagnosis that leads to understanding of behaviors. As a teacher, I taught a number of “bad kids”, only to find out in a parent conference that their ADHD medication probably came to the end of its efficacy about the time they came to my class. Aha. All of a sudden the “bad kid” label has a diagnosis that helps me understand behavior, and I respond differently to them.

I have several diagnoses, including “major depression” and “generalized anxiety disorder”. At times, those medical conditions have caused me to make unhealthy, harmful choices, including self-medication of the unpleasant symptoms of depression and anxiety with the abuse of alcohol and eventually a suicide attempt.

I don’t look at my diagnoses as labels to be downplayed or ignored, although (as Cindy rightly dioscovers) ultimately “I am who I am”, which is, of course, above, beyond, and more important than a diagnosis or “label”. But I firmly believe those of us who have a mental illness should continue to be open and honest with others about our disease, its symptoms, and its treatment, in order to lead to a societal understanding, which will inevitably lead to a decrease in “fear”.

My anger at this article (which has waned a bit as I’ve re-read it while writing this, I will admit) was initially sparked by one paragraph:

I was frightened to tell people the truth about my diagnosis, fearing what meaning they might ascribe to my new label. This fear came true when I eventually told someone that I had been diagnosed with schizoaffective disorder, and they seemed to be afraid of me. After this encounter, I found that I was afraid of myself, too.

Her ultimate road to peace, as I mentioned, was to shed the labels (and the diagnoses) and accept her “new normal”, which was great for her. I don’t think, however, that path leads to a broader societal understanding of mental illness, which isn’t helpful to the rest of us.

Yes, my “label” is “Ben”. I want you to accept me as I am.

I am also “Ben, who has a diagnosed mental illness”, and I hope that being open with that truth, you will not only accept me as I am, but will also understand why I am who I am.

I think it’s important.

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#SoCS comes from the website of Linda G. Hill.

Here are the rules:

1. Your post must be stream of consciousness writing, meaning no editing (typos can be fixed), and minimal planning on what you’re going to write.

2. Your post can be as long or as short as you want it to be. One sentence – one thousand words. Fact, fiction, poetry – it doesn’t matter. Just let the words carry you along until you’re ready to stop.