When I posted last week’s blog on mental illness, I struggled with my usage of the term “mental illness.” I knew it had a negative connotation, and my readers pointed that out on my Facebook wall. I was grateful when Diana Kern, a woman who lives with mental illness and who works in the mental health field, told me the proper term to use is brain disorder. I liked that. It says what it is without being condemning, insulting, or fearful. So I asked Diana to post that, not just on Facebook, but on my blog, too. When she sent me her comment, it was so beautiful and insightful that I decided to make it a guest blog post. Please, read it. She educates us not only on the proper terminology but also on the best way to support friends, family, and strangers suffering from a brain disorder.
By the way, when she refers to DH, she’s talking about D.H. Gregory, my friend and fellow journalist who co-authored last week’s blog post. D.H. copes daily with two brain disorders – brain cancer and bipolar disorder with chronic depression. If you haven’t already read his essay, “A Dark Cloud of Desperation,” you might want to read it before reading Diana’s excellent piece.
- Diana Kern
Thank you Suzy for this inspiring guest blog with DH. I’d like to encourage DH to write a memoir as well. We can never educate others enough on depression and other mental illnesses.
I have suffered with a mental illness since 1981 after the birth of my baby. I had many different diagnoses and after years of living in and out of psychosis, depression and mania, I have finally recovered to a level of wellness where I can experience all the good things in life. Well, most of the good things … I’d like more $$$ so I could shop at Whole Foods and own a Ralph Lauren oxford button down shirt with the Polo guy on it.
Like DH, I was finally given better medications in the 90’s and my brain finally started to heal. After over 30 hospitalizations in a 15 year period, I know what it is like to live in a state of gratitude.
My final diagnosis is manic depression with psychotic features. We now know manic depression as bipolar, but bipolar doesn’t fit me. I like to call it what it is.
While I take medications to “fix” my brain, I still experience severe highs and lows. I must be cognizant of the stressors in my life. I carefully plan my days, my weeks, my work. I listen to my thoughts and do what’s best for me.
I used to swing into a manic state and then plunge deep into depression. There were, however, periods of stability, but they never lasted long. When I would swing into a manic high, I became psychotic. I would hear voices (auditory hallucinations) and I also was delusional (bizarre beliefs). When I would crash into that “muted agony” as DH calls it, it was the same story.
Those of us who have spent time in the throes of a mental illness refer to our sickness as a brain disorder. For, indeed, it is our brains that are affected.
We tend to think that in using the term, brain disorder, some of the stigma is let loose. Whether it is or not, I don’t know.
What I do know is that it is up to me to accept this brain that I was born with and if others choose to open their minds and also their hearts to better understand our experience, we will all be better for it. In the end, we are all in this together.
Like DH, I wanted my parents and others to quit asking why I was depressed, why I was having so many problems. It felt as if they were saying that I chose to live in a state of mental undoing.
Didn’t they know that I wanted to be happy, I wanted to think clearly, I wanted to work and be an adult like others my age? I wanted, I wanted, I wanted and I thought it would never come. I’m glad I was wrong.
So, for those of you wishing to help people like DH and myself and thousands of others like us, here is some advice: when we are down, when we are low, when all looks lost to us, don’t give us advice.
What we need is for you to “be” with us. We need to know that we are accepted for who we are and what we are experiencing. We need your permission to walk, or maybe just sit, through our darkness.
Don’t tell me to take walks. I used to walk with the resolve of Forrest Gump. I had strong legs, but my brain remained fragile.
Don’t tell me to get out and “do” something. If I can’t even think, I can’t “do.”
This advice of “being” with me might seem counterintuitive. But, let me tell you, that when we feel your acceptance, we are better able to accept ourselves and find self-compassion.
A former board member and staff member of the National Alliance of Mental Illness/Texas, Diana Kern is the founder of Expect Recovery, an advocacy enterprise spreading her message of positive wellness, relationships and recovery. She has testified six times before the State of Texas Senate Finance Committee in support of funding for mental health, most recently on February 2, 2011.