In my blog posted April 10, 2014, describing the genetic anomaly resulting in schizophrenia, I summarized my viewpoint on advocacy with the following words: “Is it fair for our culture to make me the target of ridicule and fear because of one maverick chromosome? No. It is not. It is unjustifiable. I was born this way, mutant and proud. Being my authentic self is the only thing that matters.”
The point that mental illness is a natural occurrence in human life seemed to resonate with readers, and yet I found myself stuck in an existential dilemma. As a person living with schizophrenia, I wondered if going public with my diagnosis was such a great idea after all.
I initially believed that the goodness in people’s hearts would win out, and – after comprehending the odds I was up against – they would accept and support me as a person willing to make a better life for himself, despite his debilitating mental illness.
My father once called me guileless, and perhaps this unwavering faith in humanity was the best example of that innocent trust. Vulnerability at its most fragile. In a word, naked. As the day we were born. Unspoiled, free, and pure. So what sullies this Universal state? The answer is simple: the twin pillars of Ignorance and Intolerance upon which the selfish build their platform of contempt.
I assumed that by being transparent I would be instantly welcomed into a more educated and supportive environment, but that was naïve. Safer to abide by the established norms of a culture predisposed to write me off as crazy. But that self-loathing got me nowhere. I woke up every morning hating myself for having schizophrenia. Stigmatizing myself polarized me against myself. How could anyone penetrate that defense? I found a solution when I shared my story with BringChange2Mind.
I discovered that I could contribute to something greater than myself. I could give a meaningful purpose to my life rather than letting schizophrenia destroy it. I could share my experience and offer hope to others, to people who, like me, had previously felt none. And if I could make a friend, then they could too. I made my choice to become an advocate.
I get to reach out to people around the globe. I have positive exchanges online and in real life, discussions about the various ways we manage our mental illnesses, and about reaching out to others. Change, however subtle, seeps into our lives. You can’t toss a pebble into a pond without making ripples. Those big, concentric circles start with one tiny, selfless action.
Like many of you, I have a personal interest in seeing the end of the derision and dismissal of our community. The complications of dealing with a mental illness are often overwhelming, not only for those with certified diagnoses, but for the many undiagnosed as well. Stigma and discrimination aren’t just media buzzwords. This is a very real, and very tangible, civil rights issue. When someone battling a mental illness cries “I need help,” the task our community is faced with is how best to rally a force powerful enough to turn a conscious tide.
When the topic of mental health pops up in your social circle, resist the temptation to be snarky. It doesn’t make you interesting – it shows the world how ignorant and selfish you’re capable of being. Sure, it might come from a place of frustration with your own diagnosis, but does lashing out at another mentally ill person make the world a better place for you both? No, it does not. It only reinforces the stigma we all fight against, rather than creating the acceptance we deserve. It feeds the misconceptions that we’re not worthwhile human beings. Next time, take a moment to consider the feelings of your mentally ill contemporaries. Is your path any more or less difficult than theirs? Does the culture stigmatize some mental illnesses more than others? You know the answers; we all know the answers.
Do the right thing. Look into your heart before you speak. Resist joining the culture of blame and ridicule. Support your brothers and sisters in their struggle against stigma and discrimination. Avoid adding to the negative conversation by throwing shade so that Ignorance and Intolerance weigh less heavy on your shoulders. Be your own pillar of strength. Help your family and friends understand you better by sharing the naked truth. Not with anger, but with pride.
Your genetic mapping can’t be changed, but it can be managed. Talk openly with your doctor, your therapist, your psychiatrist. Tell them exactly how you feel. It’s their job to listen. If they don’t, you’re not obligated to stay with them. Talk to your service provider. Have your family or your counselor help you find a better match, one more suited to your needs. You have these tools. Use them. You owe it to yourself. Your community – the one you build around you – will be there for you when the time comes. Be strong. Be brave. Be yourself.
As a person living with schizophrenia, I am thoroughly convinced that going public with my diagnosis was the right idea. I stand behind my ideals because it is not fair for our culture to make us the target of ridicule and shame. Being authentic is the only thing that matters. We were born this way, mutant and proud. As the day we were born. Each and every one of us.
Beautifully said. We will overcome the stigma when we all speak up – for ourselves and one another.
Thank you, Liz – I agree. It’s through solidarity that we can defeat the stigma and discrimination which stand in the way of our continued mental health, now and in the future.
Hear! Hear! well said Henry! I have a 15 year old boy, diagnosed at age 4 with early onset BiPolar Disorder. Starting then we sang it loud and proud. However, so far, we have had most people in our inner circle turned away, including my own brother and most of our friends and neighbors. We do however, continue to raise our proverbial “freak flag” high! We live by one simple principal: “God bless all of those who wish us well, all the rest can go to hell!” We will continue to spread the word to end the stigma. My son is not a monster, he is a victim of genetics or as I like to say, poor breeding, lol. We all have to laugh because it beats crying. Thank you Henry for your amazing insights and Godspeed! on your writing sabbatical.
Thank you, Jeanne. I appreciate how you and your family started advocating early. I also appreciate your use of humor to get you through the hard times – that’s a trait my family shares as well.
When I was in school, my brother’s favorite song was “Almost Cut My Hair” by CSNY. We used to sing the line together, “I feel / Like I owe it / To someone!”, words which, since my youth, have expressed the understanding that the work we do today is paying it forward consciously and accountably. Total reverence for the Freak Flag.
I am grateful to hear from parents like yourself who are in the stream of change. It takes a lot to give a lot, and I’m grateful for folks like you and your son. Keep sharing!
Excellent words once again!!!!!!
Though announcing or telling or speaking of mental illness is still a hard concept….it is a must!!!! Thank you for, yet again, speaking the words I seem to feel!!!
Going a month without your blog writings — I will miss in July!!!
Thank you again!!! You’re still my fave!!
You’re right about that, Monica – it can be a difficult concept to consider telling others about your mental illness. It can also bring rich rewards of friendship, understanding, and support when the words are heard by people with open hearts and minds.
In my experience, it’s best to tell the people you need to (doctors, employers, etc.) if and when the need arises; wait until you feel comfortable telling anyone else you trust. Let them know you as the person you are, then discuss your diagnosis with them when it’s right for you.
I’ll be back in a few weeks. Keep the conversation going!
Well Said. Snarky you are not.
So true. When people realize they are far from alone, they are far less likely to feel alone. The silver lining is that I’d never have met the precious children & their parents we call friends.
Thanks, Carol. I know you’re right about that. Sometimes I forget, sometimes it’s very hard to remember that I’m not alone when the illness tells me otherwise (especially the voices), but those friends and families who can be there when they can often act as a visual, tangible reminder of how included we can be. I don’t always see it, but that’s why I keep trying, and that’s another reason why I advocate.
It is always good to hear from you; I appreciate your perspective. -HB