Author: Cecile Bibawy
(Stigma Series 4 of 6)
Dear Reader, I need to explain something to you. That man over there that you say is your husband? He's not really your husband. Yes, I know. You've been saying it for years. You got married 20 years ago, had children together, and live in the same house. But it's just not true. He's really not your husband. And since you think this, you really need to take medicine to correct these wrong thoughts you have and be normal.
So, let's go. Where? To the hospital, of course. You need help. You’re sick, don’t you see? You need to get better. I only have your best in mind. I’m telling you this because I love you.
Yes, I know I’ve been telling you this for the last 20 years. And you refuse to believe me. No matter how many times I tell you and the proof I show you and the prayers I pray for you, you won’t listen. You’re not married to him. He doesn’t exist! The fact that you’re so convinced he is is proof that you’re sick. You have to trust me. Medicine will help you. I hate to see you like this. Please, just trust me.
Imagine, and it would be easier to do so if you're a married woman, if your sister, brother, parent, or best friend said these words to you. (If you are a married man, just switch "husband" to "wife." If you’re single, switch it to “sibling” or “parent” or “close friend.”) What would you say to them? You would think there is something terribly wrong with them, yes? You’d conclude that they need mental health treatment right away.
If you and I were close, and you told me that my husband George is not really my husband and
that he doesn’t exist, and that I need to see a psychiatrist and swallow psychotropic pills
because thinking so is false and proof that I’m sick, I would be very hurt. And I’d think you were
in need of those very same pills.
Tragically however, if I had schizophrenia, this is exactly how it would appear to me. Because
the perception I have of my life and the people in it are real. That husband in my mind is as real
as your real husband.
Just as there is no way to convince you that your husband is a delusion, there is no way to
convince someone with a severe mental illness that what they see and think is not real.
This is why it is so hard to talk to my mother when she is not taking her medicine. My mother
has struggled with schizophrenia for more than 50 years. Thankfully, when the right medicine is
found, it works and we can “get along.” We can discuss life, and she can visit with the
grandkids. But when she refuses the meds, her mind is in hell, quiet to me, loud to her. I want
to make it stop, but I can’t. I want to reach inside her mind and fill in all the gray matter that
was lost. I want to lighten the cross she carries.
My book, Loving Her Mind, is like the end of a long year in a way, an old story of the trials of
mental illness peppered by pain, confusion, stigma, and the resulting coldness of isolation. The
old year grays into a cold winter, and the people creep inside their warm homes as a mentally ill
person and their loved ones creep inward, quiet, secretive, floating and stuck in their troubled
minds. I tell the story of what happened and the aftermath. I surmise the effects and propose
new things that are not really that new.
For years, I debated whether anyone would want to read my family’s story. Who would care?
Plenty have written and published their poignant stories about difficult childhoods, mental
illness, and family disfunction. How is ours any different?
I wrestled for years with these questions in search of the answers. I asked God, who tenderly
led me along. He sent me coaches, supporters, beta readers, editors, and words.
He gave me words to explain shapeless feelings and trauma that had formed high walls inside
my heart and soul. And He gave me courage to share these words with humans everywhere. Yes, I was scared.
Are you scared?
I don’t mean to pry. I know it’s a personal question. And most of you will never tell me, but…
are you? In your life, is there someone you know who is struggling mentally? If yes, what is
more scary? The illness/disorder or that someone will find out about it?
In my case, I was scared for people to find out for two reasons, not just one. I was afraid to lose
my friends, and I was afraid to lose my aunts and uncles - Mom’s siblings. After opening up, I
was only able to keep some of my friends.
My relatives were unaware of the details happening in our home for many long years. Recently,
the window I offered them in my blog and ensuing book, hoping they would get a clear view of
our daily struggle with schizophrenia, was slammed shut. Some of my cousins never knew their
aunt was diagnosed with a severe mental illness until they were in their thirties. Stigma
petrified our family and me. Ultimately, it slowed my mother’s recovery. Stigma keeps people sick.
Without the dark cloud of stigma, her loved ones would have discovered sooner effective ways
to talk to her. In my book, you will find what we did and wish we had done to reach my mother.
Xavier Amador, author of I’m Not Sick, I Don’t Need Help! Is a moving story and wonderful guide
that offers communication tools for caregivers of the mentally ill. I learned so much from his
account and research.
Telling our stories helps S.T.I.R. it up. It came to me while writing:
Speed up recovery
Talk about it
Crushing fear by the brave telling aloud of our stories scatters the clouds that hover. That’s the
way of things, isn’t it? The scary things tend to become enshrouded with stigma. Then we keep
it all inside.
A sweet author friend said I was a quiet storm. She’d known me all of 24 hours, but she knew
me. I had said one thing about my past. One thing to begin the unveiling of mental illness in the
family. I finally understood all the darkness of shame, secrets, and pain that lay behind that veil.
And I knew that lifting it would cast the light of truth and diffuse the root cause - stigma.
The words to our stories are laced with a silent cry of hope that our people cannot hear with
their ears - hope that we can shield the winds of fate and falter, distinguish the good and
grotesque, grab hold of what was and what could have been, accept what is fact and what is
mystery, recognize accidents revealing themselves as acts of salvation, and embrace joy amid
pain and love amid fear.
Even if not struggling themselves, a vast sum of people can say they know at least one person
who struggles with mental disease. But if you don’t and you are not a caregiver, what can you
do? If you lend a hand when a person or family is in crisis or lend a listening ear when someone
wants to share, you will hold a safe space for us. Like soldiers commanded to hold the fort,
defend it from attack, you’ll be in the fight. You’ll be a warrior, fighting with us.
Sometimes, it just takes a question - the simplest, most common of all questions - asked in
sincerity: how are you? At just the right time, that’s all it takes for the words to pour out like an
avalanche or a soft rain - whichever is most needed at the moment. Sometimes you won’t know
how to respond to what they are saying. That is okay. They want what we want. To feel
validated and loved. Empathy goes a long way!
When you join forces, you’ll find a plethora of local and online resources that can be tapped. A
quick search online and asking those you know in the field will equip you to equip another. Just
being willing and able to refer someone to a trained therapist will normalize mental health care.
We easily drop names of our best doctors, dentists, mechanics, and hair stylists. Everyone
should have a favorite therapist or mental health specialist to refer.
We don’t always think of it - the significance of taking care of our own mental health. If we all
actively tended to our minds with the same commitment as to our bodies and spirits, we would
mightily help the mentally ill! Instead of breaking hope and trust, we’d break stigma. A person
struggling is less afraid to seek help if issues are openly and readily addressed. Families that
discuss together what’s happening find solutions and take loving and effective actions. Healing
quickens and hope is renewed. For the love of our people who struggle, let’s do it scared and
S.T.I.R. it up.