Stigma Starts in the Family

We talk a lot about stigma in society against mental illness.  We are afraid to come out of the closet with our illness, because we will be judged and misunderstood.  We will be labeled, and people will not see the person beyond the label.

But it is my belief, that perhaps the most stigmatizing people in our lives can be found right at home.  The people who are at home when we are at our worst.  The people who have spent countless hours driving us to appointments, waiting in emergency rooms, and most of all, picking up the pieces of the mess we left when crisis hit us.

Maybe it’s offensive for me to use the word “us,” instead of “I.”  Maybe.  But I think many people can relate.

In my life now, I am on excellent medications and I have a stellar system of support in place, from the friends in my life, to my job where I work as a peer.  I freely disclose my illness, and it is the best feeling in the world.  As dreadful as it is for a gay man to never acknowledge his sexuality, so it is for me with my mental illness.

For me, my illness is a part of me.  Not to be defeatist.  But… I have dealt with my illness for as long as I can remember, even in early childhood.  For me not disclose it, means that I invalidate the lessons and wisdom I have learned from life, in spite of my illness.  Hiding my illness means that I submit to shame.

These days, I am doing well.  I’ve lost about 65 pounds of the weight I gained from psych meds, and am now athletic.  I have a full time job that I have kept for almost a year, for the first time in my life.  Next month, I am turning 30.  There is much for me to be happy about.

And yet, remnants of the past still remain.  Especially in my family, they have not accustomed to my change in recovery.  They still see me as the ill person with the irrational behavior and incapacity for responsibility.  When I express my strident political opinions, I am accused of being moody.  When I sigh after working hard all day, I’m accused of being impatient.

This is stigma at its worst.

For me, I strive for wellness not only for myself, but also to show the world that recovery from mental illness is possible.  I mean, look here.  I exercise.  I lost 65 pounds.  I can run 5 miles without getting out of breath.  There are people out there, “mentally well,” that are morbidly obese.  And yet they are more mentally well than I?  Not to diminish the mentality of the obese, but… weight loss and healthy nutrition takes discipline.  Doesn’t it require mental wellness to exercise discipline?

What about my ability to make friends wherever I go?  As a child, I had but two best friends, both whom I lost to circumstance.  Now, I have dozens of friends.  I’m throwing myself a party next month for the big 30, and I expect maybe 15 people will come.  My sociability was something that I developed.  It didn’t come natural to me.  And yet, I’m criticized to be ill by family members who never trust anyone beyond the home.

What about my ability to perform music in front of large audiences without feeling stage fright?  What about my talent for giving speeches and engaging audiences, again without anxiety?  Am I more ill than a person who never takes a chance to stand up for himself, so he can fit in?

I’ve worked damn hard for my wellness.  And I have realized that, when we become well, we still are victims of stigma, simply because people are unable to forget the past.  People equate our illness with who we are.  I “am” a pain in the ass, because I was a pain in the ass to care for.

That is why I embrace my illness, and say “I AM schizoaffective disorder.”  Because if schizoaffective disorder can put on makeup every day, and dress fashionably and have a rockin’ bod… then you can’t discriminate me for it.

Sometimes, I wish those who stigmatize us would look in the mirror, and stigmatize themselves.  Perhaps a sadistic wish, but I’ve not come up with anything better at the moment.

Love Is Not Won Through Praise

We with mental illness are typically told that we are not competent to lead ourselves, in our own lives.

“You’ve made so many mistakes with impulsive spending because you’re bipolar.  Let me take your ATM card from now on.  You can’t be trusted.”

“Come on!  Get up off that chair!  Without me to clean up after you, you’d be living in your own filth.”

“You know, the only reason you live in comfort, without a job, is because I allow you to stay in my home, and I cook your food, yadda yadda.  Without me, you’d have nothing.  You’d be on the street.  So you better show me some respect.”

And so forth.

I remember… for so many years, I always looked to others to make decisions for me.  It started in childhood, with my mother.  As it does with us all, I suppose.  But for me… it never ended.  Because the older I got, the more that mental illness began to rear its ugly head…

The illness began to replace my head with its own.  A ghostly sepulcher, super-imposed on my own, slowly changing me… into it.  Yet this entity is, of course, invisible.  No one sees it, nor do I.  No one knows that it is separate from me… least of all myself.  It simply happens… me, changing into something that is not me.

Whatever this process is, is irrelevant.  Because the only thing that anyone ever saw, was my behavior.  As the years went on, my behavior became more and more symptomatic, and I was perceived as “incapable.”  “Incompetent” to finish a masters program.  “Unfocused.”  “Procrastinatory.”  And the absolute worst word, one that a beloved professor bestowed on me:

“You’re inconsistent.”

I was in the south of France, at the time I heard this.  I was participating in a viola masterclass with my professor at IU.  It was a costly trip… my mother and I sold some family valuables to pay for it, after much begging.  My thought was… if I could just go to France to be with my professor, maybe he’d like me.  Maybe he’d tell me I was a good violist, and maybe he’d favor me.  Maybe… he’d take me under his wing, and maybe he’d care more about me than the other students in my studio.  I saw it happen everywhere in conservatory.  Why them, and not me?

“You’re inconsistent.”

It was a simple statement he uttered.  It was a response to my playing on the viola.  He was attempting to correct an error in my playing: when I played a section one way the first time, I played the same passage again a different way for the next time.  Most likely, mistakes cropped up in different places each time.  And to this, he said I was “inconsistent.”

But for me, this word was a dagger.  A dagger that stabbed a part of me that I couldn’t even find.  Certainly nowhere physical.  But nowhere mental either.  It was not a fault with my personality… was it?  Or my spirit?  Is this a matter of religion?

You might think I’m taking a gesture of simple constructive criticism to an over-exaggerated level.  But the problem was, I didn’t understand what he was even criticizing.  I wasn’t trying to play inconsistently.  That was just what came out.  So for him to say I was inconsistent, was to say that was inconsistent.

Me.  At the very core of my being.

Perhaps this story can shed light on why criticism, even constructive criticism, takes a lot of maturity to bear.  Because, the inner child in us all, as much as we want to remain in touch with it, is the most sensitive to criticism.  A child, wanting approval from her parents, is only met with disagreeance.  Or a viola student, playing a piece for her teacher, wanting that praise.  Wanting that validation.

For me, I am an adult now.  I will be thirty next month.  And yet, I still seek that approval from people.  At times, I fear standing up for myself, because I don’t want to ruffle anyone’s feathers.

Something just occurred to me.

Getting the approval from others is not the same as love.

And LOVE, is not expressed by approval.

This is one thing that we must get to the bottom of.  Biologically, children are drawn to parents by instinct, and vice versa (hopefully).  A child learns how to adapt to its environment, and easily learns such by understanding what is accepted, or approved of, and what is not.  What is accepted, is often rewarded.  And sometimes, that reward is a hug, or a kiss, or a pat on the back.  “You won that piano competition at school!  Come here, give me a kiss!”

Perhaps the transition from childhood to adulthood is most acutely marked by the realization, that love is not something earned.  And that acceptance is not love.

Back to France.  Looking back, I realize that I played the viola for one simple reason.  As a child, I garnered much praise from teachers, musicians and school classmates for my talent.  And that praise… seemed to feel good.  And in college, I stopped getting that praise.  And when that happened, I no longer had a reason to play.

Imagine: the sonorous joy of music, diminished next to the realization that music cannot be used to win love.  That is how warped our minds can become.  So warped, that we perceive nourishing water to be poison, just because a grandmother told us not to swim in a pool.  And I, following in her footsteps, in her mentality, simply to earn a hug and a kiss at the end of the day.

This is not love.  This is condition.