Palo Alto Weekly

Cover Story - February 7, 2014

Living with mental illness

Medications, stigma affect self-perceptions and choices

by Sue Dremann

"Kaitlin Chan" was working toward her doctorate in clinical psychology when she tried to end her life. She was taken to the hospital on a psychiatric hold, and later she was diagnosed with bipolar disorder.

Now, Chan must take powerful medicine to treat her severe mental illness.

"It worked. But you do pay a price every time you take these medications," she said. The lithium caused a tumor on her kidney and kidney disease. And she has developed a thyroid condition that she attributes to taking the medicine.

While families, medical professionals and advocates debate whether severely mentally ill persons should be compelled to take treatment, the recipients of those forced treatments said they often do harm.

Chan once spent three weeks in a treatment facility, where she received so much medication that her heart almost stopped, she said.

"I was drooling and dehydrated. They gave me an IV, and my heart came back," she recalled.

Chan is opposed to forced treatment and hospitalization when there is no danger to the person or others, she said. Being handcuffed and dragged away is traumatic for people.

"You are treated as a criminal. It doesn't really help," she said.

She said she accepted her illness from the beginning because she knew the symptoms, and she is "medication adherent" — a term she prefers over "compliant" because it infers that she has a choice.

Chan has the support of her family. She is self-aware of the triggers of her illness. But she has seen people decline into homelessness and shredded clothing, walking around talking to themselves, she said.

Treating that level of illness is a quandary, she said.

"I don't think there's a perfect answer for it. I can understand why parents want to get treatment for their loved one. They want to help," she said.

"It is, sadly to say, their choice. If you start committing people who are not a danger to themselves, that could be a problem. There are all of these gray areas. We're taking away personal liberties," she said.

"Lucy Grey" agreed. A county mental health worker involved in peer support, she is also a "consumer" — the term persons who are receiving treatment for mental illness use to describe themselves.

Grey has worked at Santa Clara Valley Medical Center's Barbara Arons Pavilion, an inpatient facility where people spend weeks or months in treatment while still suffering acute symptoms.

"There's lots of tears that I see. It's upsetting for everyone. The hardest piece is, how do you get people that ill who have been through the system again and again to get treatment?

"It sucks being on medication. You do have side effects. And people are more creative without medication. I write poetry, and I feel blunted. A lot of creative people feel that way. Taking medication affects them a lot," she said.

Grey has never been hospitalized for her bipolar illness. The first inklings that something was wrong started when she was 4 years old. She remembered having severe anxiety. When she began to menstruate at age 11, depression set in.

"The day it happened, the clouds rolled in, and they never left," she said.

Taking a "cocktail" of medications "angered me a little bit," she said.

But at 40, she is stable. She has gone through "a true recovery process," she said, which includes mindfulness therapy and peer counseling.

The stigma attached to mental illness remains a bigger challenge, she said.

"Stigma really affects everybody. Especially the older generation. They don't want to be associated with mental health problems. Clients say they don't want anybody to know. People will look down on them. There's a lot of fear."

Working as a peer counselor is the first time Grey has felt comfortable and accepted, she said.

"It helps me to be myself and stay recovered. I've had a lot of jobs. I felt like I was carrying around a big secret. But since I started working here, this big burden is off me. Before, I couldn't fully be myself.

"The truth is, after all of these years, you do feel it on this inside. We feel weak or bad about ourselves," she said.

But working among her peers has helped give her a voice.

"Now I give presentations, and I'm who I really am. I don't have to be afraid, and I get to help other people feel less afraid themselves."

Comments

Posted by Carroll Harrington, a resident of another community
on Feb 7, 2014 at 10:42 am

Congratulations to Sue Dremman for this excellent article and accolades to Kaitin Chan and Lucy Gray for sharing their experiences. I am sure this will help many others.


Posted by Bravo!, a resident of Community Center
on Feb 9, 2014 at 6:05 pm

Katie Chan, you are a very brave lady to share your story! Thank you so much! Mine is nowhere near as courageous, but the synopsis is:

My mother was a danger to herself and to me. She ate NOTHING but pastries, and then forced herself to vomit. This, of course, caused her to lose most of her teeth. I found out later that this behavior had started when she was working as a model in the Forties. she also, as the oldest of seven children, had been forced to help raise her siblings, which caused her to dislike children.

My mother considered my birth to be " rotten luck", and she mistreated me from the beginning, skipping feelings and " accidentally" dropping me several times. By the time I was school age, this had escalated to whipping, slapping, hosing-down, forced enemas and laxatives, skipped meals for two days at a time, beatings,with sticks pulled from trees in the back yard, etc.

Neighbors complained of my screaming, particularly during the summer months when she was "stuck " with me. Once summer evening someone called the sheriff. My father sent the officers away, but after several more calls that summer, when my father was working, my mother was taken to the psyche ward of a local hospital.

This happened a few more times before the 72- hr hold law took effect. By then, and until my father died and I left home at age 17, my mother was shipped from one hospital to another every 72 hours, all over three counties! When she was home, she ate the " nerve pills" they gave her like candy, and became addicted.

I refused to talk to her after my father's funeral, but because mental health care in those days was NEVER paid for by insurance companies, not even in the tiniest portion, all of my mother's psyche bills were paid by my father's life insurance, forcing her to sell the house and two cars so she could move somewhere less expensive.

My mother died thirty years later, aged 87, in spite of smoking two packs a day and eating nothing but pastries and coffee. During those years. I tried hard, with the help of counselors, to forgive her. One day, I realized that sometimes parents do unforgivable things to their children ( and each other), and that I really did not have to forgive her for them.

That "epiphany" lifted a burden from my shoulders and my own "salvation" began.

HOWEVER, as a result of unending physical and verbal abuse, I recently found out that I had visible ( by a certain type of MRI) brain damage often seen in war veterans! As a result, so that I don't end up in a pity pool of permanent depression, I have to take medication. Fortunately, the meds are covered by insurance, but it have never told anyone that I must take it, due to the stigma of this " mental illness" somehow being my fault and something I could just " snap out of" if I really, really wanted to!

Mental illness can be a misnomer for what is actually physical brain damage caused by constant fear, which produces damaging bio chemicals, or by injury or trauma of any kind, physical or emotional. It should be treated as a physical brain disease or injury, not something within the individual's control. Anything else is just another form of a use!


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