DISEASE TERMINOLOGY 101

There is a new publishing forum out there.  It's called medium.com.  You have to read what the young-un's are writing about which is how I even found this space.  It's a novel platform.  Sort of an every person's blog.  I'm cross-posting in this space, my very first medium story.  There's lots going on--I have several half completed blog posts.  Ideas for others.  Research I want to share.  Everything half written or with notes scribbled in a margin.  Hopefully it will still be relevant when I complete the pieces!  Just as an aside, there was another emergency room run, followed by an inpatient stay for a few days (kidney stone, not me).  AND, as a further aside, the hospital from hell is NOT cooperating with my health insurance company on that ICU stint I wrote about.  The bills are over 100K at the moment.  I've been a bit busy, primarily trying not to destroy my credit for starters.... 

For your consideration as they say......  my medium story....  

I am a breast cancer patient. I was diagnosed in 2006 and I live in the shadow of the disease. When those words are uttered, in that very instant, a line is drawn in the sand that is your life. You will never be the same. You can never cross the line and move back to the other side.

There are some who choose to believe that the end of treatment signals the end of the disease. You had cancer. Many cancer patients will tell you, this is not a disease that is spoken of in the past tense. And there are many others who do choose to keep the disease in their past once they are out of active treatment. I say, whatever works.

Although, in technical terms, I have had cancer, I still take daily maintenance medication. I am, however, beyond that active treatment portion of the program. I completed all of my surgeries (seven to be precise, some big, some not so much and others somewhere in between), I finished eight rounds of chemotherapy, I live with lingering chemo fallout but when asked about my health, I will say, “I was treated for breast cancer,” or “I am a breast cancer patient, currently 5 years post active treatment.” The latter is quite a mouthful but in reality, that’s the most accurate assessment of my health status regarding the whole breast cancer thing.

Note the words. No where in those words do I say, “I am breast cancer.” And therein lies the rub. How do those diagnosed with a mental disease describe their illness? Or, how do those of us who speak of someone with a mental illness refer to their disease?

It seems to me, more often than not, what we hear is, “I am bipolar,” or “I am schizophrenic.” Words matter. There is a big push to change the conversation, to stop the stigma associated with mental illness and this might be one area where we can start to shift the thinking.

“S/he has bipolar disorder,” is a far more accurate description. S/he is bipolar, in and of itself, is a stigmatizing statement. It marginalizes. It defines the person by their illness instead of presenting an accurate assessment of the circumstances. The mentally ill are afflicted by a disease of the brain. It’s not a choice and their behaviors are oftentimes, the result of the disease.

Unfortunately, most of those with mental illness are too sick for many programs and not sick enough for others. Thus, most of those with mental illness are lacking proper and effective treatment. Had my cancer gone untreated, my illness would be physically visible, likely in the form of a large tumor protruding from my body. People would look, people would ask, people would be outraged if I told them, “The cancer wasn’t bad enough, so they refused to help me.”

People with mental illnesses are looked upon as having a disease of the mind, when in fact, they have a disease of the brain. We blame them for their behavior, we look upon them as having some sort of control over what they may or may not be doing. Think about that for a moment. When the damaged organ is the brain, the very organ that guides us through our daily routines, how can we expect those with mental illness to snap out of it unless we treat the diseased organ to the best of our ability.

I firmly believe that with proper treatment protocols, a large percentage of the unemployed persons diagnosed with a serious mental illness could be employed. It would require a cohort of employers who are willing to give those with a mental illness a chance at gainful employment. Some of the most brilliant people I know are afflicted with serious mental illnesses and/or disorders. Many of them want to work, can work and have no opportunity to work because they are stigmatized.

Instead of living with a disease, we have turned them into their disease. In doing this, have we also robbed them of the opportunity to live a full life? We define them by their diagnosis. 

She is anorexic, he is schizophrenic.

In my mind, that implies there is an element of control on the part of the person living with a debilitating disease. Is it possible that our labels are adding yet another hurdle to a population of people whose needs are largely ignored by the rest of us?

Perhaps we can begin to shift the thinking, to break the barriers, by starting with one small step. Change the words. Be conscious of how you refer to those living with mental illness. And, if you are in a position to employ someone with a mental illness, give that some thought, too.

It’s time to follow the lead of some of the mental health advocacy organizations and show that we are #StrongerThanStigma and let those living with mental illness know #IWillListen. We can start by taking whatever steps are within our power to change the status quo.

What can you do? What will you do?

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