Giving Stigma the Boot

This discovery just in:

I figured out why most people don’t understand you.

Their lack of compassion comes from a place of hurt.

Think long and hard about their envy, their critical nature, their attacks.

Doing so you’ll most likely find they feel threatened.

You’re able to have or do something they can’t have or do.

Be empathetic; be ethical in how you interact with these and other people.

Yet remember: you are a person of worth equal to others in society.

You are worthy, regardless of whether you’re in remission or not.

You are a human being and are entitled to be treated with dignity.

Are you struggling? When will this end you might think.

It’s foolish to assume that other people have it easy. You don’t know what’s going on behind their closed door or in their head.

I say: try to have compassion for people who don’t seem to have compassion for you.

One day they could be tested by getting ill. Then suddenly they’ll be clamoring for a way out of pain and for others to understand.

I’ve said it before in my blogs and I’ll say it again: the role of stigma in impeding what a person can do is overrated.

I’ve thought long and hard about how to bounce back from rejection. About how to feel good about yourself when it seems other people don’t understand what you’re going through.

Meet me in the next blog entry for info on how to soldier on in the face of the heavy artillery of other people’s hurtful comments.

They just don’t understand. Get it? I no longer expect outsiders to understand what it’s like. We can’t expect the impossible from other people.

We can only expect ourselves to do the best we can with what we’re given.

I choose to make a lemon meringue pie out of the lemons life throws.

Talking About Grief and Mourning

Once again I’m the first and only person writing about a topic no other mental health writer or agency has tackled before: what it’s like in bereavement for a person diagnosed with bipolar, schizophrenia, or another emotional illness.

My father has been gone over two years. An aunt died over a year ago. After my father died I started to have conversations with him. He appeared to me in dreams.

The older you get there will be different kinds of losses–of  the people you love, of friends that no longer suit you, of dreams that go unfulfilled.

As the years roll by, our accreted sorrows can engulf us even though we’re doing well and able to function. Our grief as we get older can become unbearable not just in mourning our loved ones. Our pain over not getting what we wanted in life can also consume us.

I haven’t yet had a boyfriend come into my life or a book contract for my second book.

One, just know that you are not alone.

There’s hope that you can get what you want even though it might take longer or you might have to go about it differently in your method for achieving something. It took me 13 years from start to end to publish Left of the Dial.

Two, just understand that you shouldn’t take other people’s bull crap.

They have no idea–most likely they have no compassion because they’re in this world for self-gain so don’t value kindness.

Only I understand what it’s like to have a mental illness. I identify as a person diagnosed with schizophrenia.

I’m 53, and I’ve had to survive by my wits and grit all these years in recovery. I decided long ago that I wanted to act as a cheerleader for others with mental illnesses to give them the hope, support, and encouragement that has been often lacking.

With the “everyone can recover” mentality what gets lost in the message is that even though you’re in recovery your life can still be hard.

A therapist once told me: “Your pain can be greater because you’re aware that you’re different.”

So-called normal people just don’t get it about what it’s like to live with a mental illness. They can’t possibly truly understand.

You’re left to yourself to make your way in the world. No one asks you how you’re doing. No one calls you on the telephone to brighten your day.

To add to this the feeling of grief you have over a loss can threaten to overwhelm you, to consume your waking thoughts, to settle on your chest like a weight, to make you lose hope.

Grief and its twin rejection can seem like immutable forces that will keep us on the sidelines of life.

My analogy is that there’s not a glass ceiling for us, there’s a glass wall separating us from others. We can see the outside world and want to be a part of it yet there’s a glass wall separating us from that world.

There’s a counter-intuitive solution to combat sliding into permanent despair. I can’t take credit for this strategy. It was my own mother who told me:

“Love life. That’s the only one you have. You have to live your life.”

Then my mother said:

“It’s about getting up every day and getting your job done.”

Each of us is doing the best we can with what we were given.

One some days our job will be simply to get out of bed. On other days our job might be to go to a coffeehouse and buy a hot chocolate.

I”ll end here with this:

I understand what it’s like to be in mourning. I understand what it’s like to have ongoing setbacks.

 

 

Self-Care 101

Like I wrote in here recently you have to expect that setbacks will happen. It’s not a matter of if but when you’ll experience a setback.

As this is true it’s imperative to adapt to the changes happening in your life. You need to be flexible and open to doing things differently.

Be flexible  while you’re experiencing the setback and in an ongoing way after the setback ends.

The point is if you ask me to change as you go along in your life.

Your needs will change as you get older.

It’s also critical to remember to be kind to yourself when you’re not at full speed and are unable to do what you were ordinarily able to do.

Be kind to yourself. As long as you’re doing the best you can there’s nothing to be upset about if you’re experiencing your own kind of retrograde period.

This setback time is perfect for editing and revising, taking stock of where you’ve been, thinking about where you want to go in the coming weeks and months.

We are all human. You and I might always mourn the passing of our “glory days” like the baseball pitcher in the Bruce Springsteen song “Glory Days.”

I’m here to tell you to have no fear: the best is always yet to be.

It’s possible to emerge on the other side of the setback stronger and more confident.

None of us can predict the specifics of our future lives.

Yet by taking consistent action to move forward in the direction of our goals we can bloom.

Yes: the best is yet to be. I firmly believe this.

Refrain from agonizing over what you’ve lost or haven’t been able to do.

As long as you wake up and God gave you another day it’s possible to make positive gains.

I’ll report in the next blog entry about setting up a home gym.

We’re All Winners

Unlike the disability rights crowd I’m content to use the word “courageous” to describe what it’s like waking up every day and having to live with an illness whether chronic or in remission.

As a fifty-three-year old woman, I don’t think anything or anyone is normal in this world. One day I simply couldn’t get out of bed again. So I stayed home.

Yes, I tell you: give me some kind of prize for having had a breakdown. Call me courageous even though I recovered and I’m in remission. No one should have to deal with an illness every day of their lives regardless of whether or not they still have symptoms.

First of all, folks, it’s courageous to practice wellness in a climate where others want the right to choose to be ill. Only the ill times were no joke for me.

My belief is that you can find your kind of wellness within your illness even if your condition is more severe.

I’m not going to minimize or discount the pain people are in. Nor do I want others to gloss over the pain I’m in. Though I report from the land of Well and Plenty I didn’t always have this fertile tilled soil. It’s too darn hard to get where I’ve gotten that you bet I expect others to have compassion for all of us.

We cannot live our lives in mortal fear of emotionally clueless people who have no compassion for us and our trials. That’s why I say: give us some kind of Nobel Prize just for waking up and being able to go out the door in the morning.

Whether we’re still in pain or doing better isn’t the point. The exclamation point is that each day we’re trying our best to survive and thrive.

We’re winners just because we get up in the morning.

Dancing in the Rain

Fashion ultimately can’t cure an actual disease–if it could Kate Spade would still be alive.

When life isn’t going your way, when a setback happens or it takes longer to get what you want: I say do what makes you happy so that you can feel good.

The solution to experiencing a setback might just be to shift your focus and do something else. Or to change the method you employ for achieving your original goal.

It’s ironic–and sad more than anything–that Kate Spade could design pocketbooks that put a spring in women’s steps when we carried them. Yet she didn’t feel the same joy in her own life.

Was she 55?

I’m a 53-year old woman who hasn’t gotten what she wanted: a boyfriend and a book contract.

The quote gets it right about learning how to dance in the rain instead of simply waiting for the storm to pass.

I recommend that all readers–men as well as women–do what gives you joy.

Readers: dressing in style has been my way to dance in the rain.

This is what I’m saying: that at 53, at even just 22, at whatever age you are:

I submit the goal is to feel good about yourself and your life.

For one person, singing in a choir might make their heart beat. For another, running a 5K marathon might keep them smiling.

The pursuit of happiness is not a frivolous endeavor.

I regret there’s a backlash against the positive psychology movement that Martin Seligman started years ago.

If you ask me it’s imperative that we find out what makes us happy and go do that.

The beauty is that the older you get you can discover new gifts and passions that will bring you joy.

It’s not ever too late to make a change for the better.

The rain can end at some point. For some of us it might continue. That’s when having a fallback option makes sense.

Years ago I went back to school to get a Masters degree. That was my Plan B.

Choosing an alternative path to go down isn’t settling for less. It’s being realistic when it turns out the umbrella you were holding up has broken.

There is always going to be rain. While most of us prefer the sun the rain might serve a purpose too.

Learning how to dance in the rain sure beats being afraid of the thunder.

Mother’s Day Message

This is a Mother’s Day greeting to every women reading this blog entry. It’s thought that all women are mothers in some way taking care of other people.

My mother turned 80 this year. I’m 53 now. In 1987 when I was 22 I was diagnosed with schizophrenia. My mother had driven me to the hospital within 24 hours of my breakdown.

This greeting goes out to every mother whose adult children and or the mental health staff have blamed them for what happened to their kids.

Ever since I decided to become a mental health Advocate in 2002 – over 15 years so far – I’ve credited my mother’s one courageous act to drive me to the hospital as the number-one reason I recovered. Recovered with an ed at the end of recover because of my mother.

I will go to my grave championing getting the right treatment right away when a person first experiences mental or emotional distress.

My mother isn’t well. For 40 years she smoked two packs a day. Though she quit when she was 61 it was too late to prevent smoking-related disability. She has emphysema because of her addiction. Today she sleeps and travels everywhere with an oxygen tank.

Though I’m the one diagnosed with schizophrenia I’ve become my mother’s caregiver. Unlike how a lot of mothers are the caregivers for their adult kids with schizophrenia.

No one at mental health organizations like NAMI talk about this reverse dynamic: how adult children are becoming caregivers for their parents. Hell NAMI isn’t even addressing the mental health needs of senior citizens living with mental health issues.

What will happen after our parents are gone and we have no one to care for us?

I’m fortunate that I’ve recovered and have always been independent. I will continue to be fit and active because of my own efforts.

Yet what will happen to people diagnosed with schizophrenia who can’t care for themselves after their parents are gone?

What will happen to our parents if we can’t care for them when we’re older?

Nobody’s talking about this. Not NAMI. Not anyone else.

Over five years ago I first wrote about geriatric psychiatry when I was the Health Guide at the HealthCentral schizophrenia website.

Back then I was a pioneer in writing about this. Today I’m still a lone wolf crying out about senior citizens with mental health issues.

We need to think about the passing of this health baton. We need to get real and start talking about the services and supports available to people with schizophrenia and other illnesses that are becoming senior citizens.

We need to talk about the reality that soon those of us who are caregivers will need someone to take care of us.

I’ll end here by sending every women reading this blog entry words of compassion, appreciation, and gratefulness for all you do.

You’re Not an MD So Stop Giving Medical Advice

Chris Bruni is not an MD. I refuse to give medical advice.

Telling someone to discontinue their medication and offering a method to do so is practicing medicine without a license.

I’m not here to tell people what they should do. The story I tell–the only one I have to give–is my story. I can and will talk about how taking the SZ medication every day enabled me to be in remission for over 25 years so far.

A friend of mine who doesn’t have SZ I consider to be my soul mate. He discontinued his psych medication under supervision and is perfectly fine years later.

What gladdens me is that although he’s been successful he doesn’t give people medical advice. He thinks most people with SZ need to take medication.

My friend hasn’t attacked me–like so many anti-psychiatry folk have done–for choosing to take pills.

I want to be very clear to readers now: telling people they should discontinue their medication is practicing medicine without a license.

At this point I won’t even tell people they must take medication because as said I’m not an MD.

We can only share our stories with each other. It’s up to each of us to decide what we want to do.

If someone asked me I would tell them that I think discontinuing SZ medication is too risky to chance it. That’s my belief and my friend’s belief.

You can decide for yourself if this makes sense to you. You have the choice.

Yet I also think that choosing psychosis over health is a big mistake.

No one I know who discontinued their SZ pills got better. They started hearing voices again. (I’m lucky I didn’t ever hear voices.)

Yet even stating this I cannot tell you or anyone else what to do or how to do it.

I urge you if you’re a paid peer specialist as your job not to dispense medical advice without a license. You’re not an MD. You’re not licensed to diagnose and treat illnesses.

In the coming blog entries I’m going to talk about practical career information again.

My goal is to publish You Are Not Your Diagnosis in October 2018 which is Disability Employment Awareness Month.

People Have the Power

Individuals with SZ are seen as interchangeable with no identities of our own apart from the illness and its symptoms.

The reasoning goes: we’re not able to recover so why bother trying to help us do this if it’s impossible?

NO. That thinking doesn’t fly with me.

We should be trying to help people recover.

I don’t accept chronic disability as the fate of any human being.

My point exactly is that getting the right treatment right away can enable an individual to bloom–to do better–to be able to have a full and robust life.

I’m not a fan of the all talk and no action to create solutions MO of so-called normal people. They don’t have a vested interest in my life and health and in yours and other people’s who have MH issues.

I titled this blog entry “People Have the Power” because we have control over the dialogue. It’s also the title of my favorite Patti Smith song.

I’ve written before that I think no one we elect in government can ultimately ever do things to remedy societal ills.

So it’s up to each of us to take action to create the kind of life and health we want for ourselves.

It’s up to each of us to help each other.  Martin Luther King called this creative altruism.

I ask you:

Are you willing to remain silent?

Are you willing to accept chronic disability?

Are you willing to accept the status quo?

I’m NOT able to buy into the myth of helplessness and hopelessness.

There’s a better way: having the courage to speak the truth to power. Telling our stories.

Doing something to help those of us who WANT to recover have the OPPORTUNITY to recover.

Recovery for Everyone

I’m an Author Advocate and Visionary.

I believe in my vision of “Recovery for Everyone.”

Recovery is not and cannot be a one-size-fits-all proposition.

Today I realized the dilemma I face in championing recovery for everyone:

Not everyone WANTS to recover. I found this out on Monday.

It seems hard to believe – yet I have met a person who doesn’t want to recover.

If you’re basing “recovery” on becoming a CEO like a friend of mine did you’re setting yourself up for an impossible standard.

The point of recovery is not to achieve status in the world with a traditionally accepted job or relationship or lifestyle.

Rather the goal if you ask me is: “To Thine Own Self Be True.”

Recovery is possible when you first like yourself and are willing to go down your own path to get to where you want to be.

If you ask me it’s a realistic not just noble goal to want to do a little better and be a little better every day.

I will always get flak. It’s because I’m a Visionary who dares think recovery is possible.

What I know to be true–that having your own version of a full and robust life in recovery is possible–is often not accepted in the mainstream. My critics don’t accept this view of what’s possible.

Wanting or expecting to become a CEO isn’t in the cards for every one of us.

Yet whatever our individual limitations are we can and should develop “work-arounds” to make our lives as happy and healthy as they can be.

I will go to my grave championing that getting the right treatment right away results in a better outcome.

Getting the right treatment right away has the potential to halt or totally stop disability in its trajectory.

Need I say more?

Yet regardless of the degree of disability that any of us face:

I say giving up hope is a mistake.

I’ll talk more about getting the right treatment right away in the next blog entry.

Ongoing Psychiatrist Questions

Questions to Ask Your Psychiatrist (Ongoing)

  1. What is my diagnosis and how did you come to that conclusion?
  2. What medication do you propose to use? (Ask for the name and dosage level.)
  3. What is the biological effect of this medication, and what do you expect it to accomplish?
  4. What are the risks associated with this medication?
  5. How soon will we be able to tell if the medication is effective, and how will we know?
  6. Are there other medications that might be appropriate? If so, why do you prefer the one you have chosen?
  7. What are the side effects of the medication? How long should I “wait out” any side effects before calling you?
  8. Are there other medications or food that I should avoid while taking this medication?
  9. How long do you expect me to be on this medication?
  10. How often will I be seeing you until the medication takes effect?
  11. If I’m taking more than one drug, when and how often should I take each one?
  12. How do you monitor medications, and what symptoms indicate that the dosage should be raised, lowered or changed?
  13. Are you currently treating other patients with this illness?
  14. What are the best times and what are the most dependable ways for getting in touch with you?
  15. What do you consider an emergency if I have to call you after hours?

Feel free to add your own questions.