The fight for Insure Tennessee
by hopeworkscommunity
Larry Drain
3/25/15


Insure Tennessee has resurfaced, thanks to some courageous senators in the Tennessee State Senate. In an hour it goes before a Senate Health Committee trying to survive the next step in the process. The papers today say it still faces serious obstacles. It is time for everyone to redouble their efforts and push even harder. In the end it is about whether or not justice will be found for so many Tennesseans that have waited so long. It is about so many lives unnecessarily ruined and so many more that need not be ruined.

The argument in Tennessee is not about competing models of care. Despite all the high sounding rhetoric there are no competing models. It is an argument for care versus a feverish search to make abandonment a political, financial and moral value. It is not about how to care, but rather or not to care at all. In the end it is about making turning your back on the more needy and more vulnerable amongst you a virtue and political necessity.

If it is about abandonment it is about the everyday, deep in the pit experience of terror. It is terror not just of the sickness or challenges you face, but a terror borne of the spirit killing certainty that when you are the most vulnerable, the most fragile, the most needy that no one will be there. It is in the recognition that because of your poverty, because of where you live, because of many things, most of which you have no control that for some inexplicable reason it is against the rules for you to get the help you need.  

It is about a system that says because of your financial status you will most likely die earlier than your fellow citizens.

It is about a system that says that ordinary and expected illnesses that medical science can treat or cure may go untreated for you even if it should mean your unnecessary death.

It is about a system in which any sickness may present you with financial catastrophe that you can never get past.

It is about a system that threatens your ability to keep a job and provide for your family if you cant get the medical care you need to stay healthy enough to keep that job.

It is about a system that tries to tell you that you are the cause of why it doesn't work well rather than the victim of how it does work.

It is about a system that threatens the safety and security of your family and that in the end tells your children something is wrong with them.

It is about a system that attacks the heart and soul of its members as much as it ignores their bodies.

It is about a system that treats poverty as a crime and a moral failing.

It is about a system that in abandoning its most vulnerable would have each of us abandon something of the best of ourselves.

It is about a system long past time to change.

Your voice matters. Speak loudly and more loudly. Do not stop or turn around.

INSURE TENNESSEE!!!

I misunderstood the power and position of forgiveness in human relations for most of my life.

I'm writing my story in hopes that it will inspire others to share their story. I don't know if there is a "book" in everyone but I know for certain there is a story in there. I encourage you to share your story of overcoming some of life's challenges. Someone needs to hear what you have to say. They are waiting!

I appreciate this report a great deal. We with mood disorders live everyday to keep ourselves up and going. We work hard to "pass" as just another face you meet on the street. The ADA is not proving to be very helpful in keeping the disabled in their employment. At least, it seems that way to me.


People With 'Invisible Disabilities' Fight For Understanding
NPR
MARCH 08, 2015 5:18 PM ET
NAOMI GINGOLD

Some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair or cane. But others — known as "invisible" disabilities — are not. People who live with them face particular challenges in the workplace and in their communities.

Carly Medosch, 33, seems like any other young professional in the Washington, D.C. area — busy, with a light laugh and a quick smile. She doesn't look sick. But she has suffered from Crohn's disease, an inflammatory bowel condition, since she was 13. There have been times, she says, when she's "been laying on the floor in the bathroom, kind of thinking, 'Am I going to die? Should I jump out in front of traffic so that I can die?' Because you're just in so much pain."

More recently, she was diagnosed with fibromyalgia, a condition that leaves her in a state of full-body chronic pain and intense fatigue.

For Medosch and others who struggle with an invisible disability, occasional hospital stays and surgeries are not the hard part. Mundane, everyday activities can be more difficult.

"Washing my hair, blow-drying my hair, putting on makeup — those kind of activities can exhaust me very quickly," says Medosch. "So you kind of blow-dry your hair and then you sort of sit down for a little bit."

Walking to the subway or even bending down to pick something up can take a lot out of her. But that isn't apparent from the outside.

"I kind of call it being able to pass," she says. "So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life — especially in interactions with strangers, getting your foot in the door in a situation like a job interview."

It is hard to pinpoint the number of Americans with an invisible disability, but it's estimated there are millions. Their conditions may range from lupus to bipolar disorder or diabetes. The severity of each person's condition varies, and the fear of stigma means that people often prefer not to talk about their illnesses.

But in employment disability discrimination charges filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones, according to analysis by researchers at Cornell University's Employment and Disability Institute.

"You know, it's that invisible nature of an illness that people don't understand," says Wayne Connell, the founder and head of the Invisible Disabilities Association. He started the group after his wife was diagnosed with Lyme disease and multiple sclerosis.

"We'd park in disabled parking and she didn't use a wheelchair or a cane, and so people would always give us dirty looks and scream at us," he recalls.

"When they see someone in a wheelchair, OK, they get that they're in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?"

Medosch has had similar experiences with her handicapped parking tags. She also says that she faced challenges obtaining accommodations from a prospective employer.

Joyce Smithey, a lawyer who specializes in labor and employment, says that's not uncommon. When people with invisible disabilities request accommodations, Smithey says, some employers respond, "We don't do that as a policy."

"And that's a problem," Smithey says. "Because that person is not asking to partake of a benefit that's offered in a policy; that person is asking for an accommodation they're entitled to under the law."

When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment.

Medosch says she's comfortable being vocal about her disability now because she's well protected at her current job. She hopes discussing her own experience will help boost understanding, but acknowledges invisible disability can be hard to fathom — especially when so many people who live with it seem, outwardly, at least, to be just like everyone else.

The big payoff of well-chosen words

By Stephen Propst

You may think that talk is cheap. But, when words are used thoughtlessly, carelessly, or hurtfully, they can take a heavy toll. Like an arrow, “wrong” words can be sharp, piercing a person’s spirit, ripping away at self-esteem, and making a person feel belittled or even betrayed. Ill-chosen words can strain friendships and create stress. And especially vulnerable are people who have bipolar disorder.

Now, let’s be honest. Dealing with bipolar disorder is not only tough for the people who have the illness, but it’s also a challenge for those who live with them. Taking time to consider the impact of what you say before you “fire away” makes it easier. Choosing your words carefully can strengthen relationships, fuel recovery, and make for a better quality of life for everyone.

“Never tell anyone that he looks tired or depressed,” says H. Jackson Brown Jr., in his book Life’s Little Instruction Book (Rutledge Hill Press, 1991). That’s good advice! Now, let’s look at 10 more comments to avoid making to someone who has bipolar disorder. These observations come from more than two decades of dealing with the illness and from years of leading support groups and consulting with families. The goal is to help family and friends to more peacefully coexist with those of us who have bipolar.

What not to say

You sound a little down today.
That’s what a friend said to me within the first 30 seconds when she phoned the other day. No kidding! Since I live with bipolar disorder, of course I don’t always feel 100 percent up to par. I just don’t need my symptoms constantly gauged or continually evaluated. It’s like having a never-ending physical. Most people with a mental illness know how they feel. Being told you are not sounding well is not constructive, nor is it a substitute for true compassion.

I thought you were taking your medication.
Dealing successfully with bipolar disorder cannot be reduced to whether or not someone has taken a pill. There are no quick fixes. Confronting a chronic, serious illness is an ongoing process, and there are bound to be ups and downs. The more you take the time to learn about bipolar disorder, the more you will understand how difficult managing such a condition can be. There are countless resources—books, videos, support groups, etc.—that address and reduce the mystery and misunderstanding surrounding bipolar disorder.

You’re too smart to have bipolar disorder.
When I first heard that remark, I felt so horrible, as if I could have prevented what had happened. Even worse, I felt that someone, such as a homeless person, was somehow more “deserving” of such an illness than I. The brain, like any organ in the body, is subject to having problems. It is cruel to say something that suggests that bipolar disorder doesn’t exist, isn’t legitimate, or isn’t as significant as any other medical condition.

You know he’s ‘bipolar,’ don’t you?
Reducing someone to the illness he faces is destructive. In fact, it is cruel to see a person only through the lens of a diagnosis. Unfortunately, it happens all too often. A person who has bipolar disorder should not be defined by that with which he might struggle. Guard your tongue. Focus on the person you know and love, and dwell on all that makes that individual special. Your friend or family member still has a life.

Stop acting like a fool!
Granted, some conduct associated with bipolar disorder can be very difficult to contend with. When you realize, however, that a particular behavior is actually symptomatic and born of the illness, it makes accepting and dealing with it much easier. I see families who think that their situation is unmanageable, until they meet other families facing the same circumstances. With education and patience, these families come to realize that there is an explanation for what they’ve been witnessing.

Guard your tongue. Focus on the person you know and love, and dwell on all that makes that individual special.

It doesn’t take much to set you off!
Those of us who have bipolar disorder are often more vulnerable and responsive to what happens around us. When you make careless statements, your tongue becomes a trigger that can rouse a reaction and escalate symptoms. You unnecessarily incite a mood change in the person you really want to help.

You’re lazy and don’t have a life anymore.
Are you pushing someone who has bipolar disorder to get on with life? Doing so might create stress, counteract recovery techniques, and worsen overall health. If you have a family, a job, social engagements, etc., consider yourself not only lucky, but also far apart from the typical individual who deals with bipolar disorder. Such a person has often dealt with a radical departure from any sense of a normal routine. Recovery takes time and work, and the role you play is critical. Help by using constructive dialogue that acknowledges progress. Don’t push too hard and don’t expect everything to happen overnight.

We used to have high hopes for you.
I sat at a support group and heard a mother say: “My son was going to be a doctor and have a wonderful family, but now he has bipolar disorder.” As I listened, I watched the young man’s face just drop. He was crushed by his mother’s words. Such a statement is not healthy, because it does not convey unconditional love. What you say does matter. Remember that we are all human beings, not human “doings;” the more you acknowledge our being, the more we can end up doing. There is no need to squash hope or diminish dreams.

Don’t take everything so personally.
With bipolar disorder, there are obvious physical symptoms, such as changes in appetite or sleep; the mind, as well as the brain, are impacted. The patient’s self-esteem also takes a tremendous hit. That’s why a promised phone call that never comes may be taken much harder than you might imagine. Likewise, saying things that ignore or make light of someone’s sense of self-esteem should be avoided.

You seem a little overly enthusiastic.
Remember that someone who has bipolar disorder is still entitled to a personality. Before I had bipolar disorder, I was outgoing, happy-go-lucky and quick-witted. Now even though I have this illness, those same personality traits still exist. At a support group recently, a young man was very energetic and expressive. Someone accused him of being manic. Fortunately, a psychiatrist was present. He said that the young man was displaying no manic symptoms whatsoever and that it was cruel to strip a person of his personality merely because he has a diagnosis. The doctor added that anyone is entitled to a full, normal range of emotions.

What you can say
Sticks and stones can break bones, but words hurt, too. Talking carelessly can shatter self-esteem and stifle a person’s motivation to have a life again. Instead, use statements that are more likely to strengthen relationships and support recovery.

Here are some simple phrases to get started:

“I love you, and I care.”
“You’re not alone in this.”
“I’m sorry you’re in so much pain.”
“I’m always willing to listen.”
“I’ll be your friend no matter what.”
“This will pass, and we can ride it out together.”
“You are important to me.”
“When all this is over, I’ll still be here.”

Speaking of differences
Last year, at the Fernbank Museum of Natural History in Atlanta, Georgia, an amazing, special exhibit revealed that every imaginable genetic differentiation—body size, health, anything—is attributable to less than one percent of all genes (Human Genome Project). We are more than 99 percent identical. So, if you know someone who has bipolar disorder, why not concentrate on speaking to the 99 percent of that person’s humanity that really matters?

Talk is not cheap. It pays to use words that encourage, enlighten, and empower. You can make a positive difference in your loved-one’s recovery and in your peace of mind.