woman bringing a man a meal

'No Casserole' Illness

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Losing the battle with my morning headache, I awoke late one morning to see this email from a complete stranger (names have been changed to protect anonymity).

“My 26 year old daughter [Mary] is back in the hospital… As a parent I feel so helpless. Thank you for helping to bring it out of the shadows. My daughter would rather die than to live with the side effects of medication… help us, please… [John].”

Because of my dual role as mental health blogger and National Alliance on Mental Illness (NAMI) presenter, after a few phone calls, I was able to leave a message with the NAMI coordinator for John’s county chapter. She called me back as I was finishing up my exercises. She said she would contact John. As I was getting dressed, John emailed me back.

“Thank you Danei for responding. I got a call from the local NAMI chapter member … Yes I will ask her in an hour about sharing cell phone numbers… Thank you. John.”

Now, I knew John and his family would not have to walk this excruciating road alone. “We have a safety net around John and his family,” I reminded myself as I pulled out of my driveway later that afternoon. With a tremendous sense of relief, I was able to drive with tears glistening in my eyes. A wise friend was right, “Once a person has stood that close to the edge, it never goes away. You’re always aware of the darkness that stands nearby.” Now, I knew John and his family would not have to walk this excruciating road alone.

But why me? A stranger?

As I was pulling onto I-275 South, I gritted my teeth in the familiar frustration of traffic, while thinking, “Why did he have to contact a stranger?” Don’t get me wrong. I was humbled that John thought to contact me. In a heartbeat, I knew I would willingly help anyone suffering in silence. I know what it’s like to stand at that abyss. I have vowed not to lose a life.

Taking the highway to downtown, thoughts plagued my mind, “Let’s face it. If John’s daughter had been in a car accident, their friends and family would have circled the wagons and started around the clock food and support for John and his family. Not in the case of a mental illness.” I remember the article called “Changing the ‘No Casserole’ Response to Mental Illness” by Dr. David Sack in his March 2015 Psychology Today blog.

“A mother of two who is active in the International Bipolar Foundation shared a story the other day. When her youngest daughter was diagnosed with diabetes, friends called, sent cards and flowers, brought food, and posted encouraging Facebook messages. When her eldest daughter was diagnosed with bipolar disorder a few years earlier, however, the family got a different response: silence. “It’s known as the ‘no casserole’ illness,” she explained.”

“The no casserole illness,” I thought to myself disheartened. “We live in the 21st century when scientist have found at least one gene related to mental illness (XIST gene located on the dormant X chromosome) and the potential for a blood test for depression, why are we treating mental illness like the plague?”

John and his family are going through a time of high stress, according to the Stress in America: The Impact of Discrimination, a report released by the American Psychological Association. In this survey, adults who receive emotional support report lower stress levels than those who said they receive no emotional support.

Why do we do this to those we care about?

I was reminded of what Dr. Sack said:

“With that anecdote, we get to the heart of what’s wrong with our reaction to mental illness. When someone is diagnosed with a ‘physical’ ailment, we offer our support and encouragement. When the illness is mental, however, we all too often turn away, just when we’re needed most. It’s a response that has its roots in the stigma surrounding mental illness – stigma that’s been fed by fear and ignorance that few of us take pains to overcome unless we’re personally affected. As a result, those suffering with issues such as bipolar disorder, depression, anxiety, obsessive-compulsive disorder, schizophrenia and PTSD — tens of millions of us, according to National Institute of Mental Health statistics — often find themselves struggling not just with their illness but also with a sense of shame and abandonment.”

“I know what that feels like,” I thought to myself navigating downtown traffic. “That is why I am so adamant reducing stigma and by my example I hope I give people the confidence to step forward and tell their stories.”

Liz Szabo, of USA Today in her article, “Cost of Not Caring: Stigma Set in Stone” mentioned Pastor Rick Warren, a best-selling author, founder of Saddleback Community Church in Orange County, Calif., who began speaking out about mental illness after his son Matthew killed himself at age 27. Warren compares the stigma of mental illness to that of AIDS and HIV.

“In both cases, people are blamed for bringing suffering upon themselves, he says. ‘If I have diabetes, there is no stigma to that,’ says Warren, who is making mental health one of his key ministries. ‘But if my brain doesn’t work, why am I supposed to be ashamed of that? It’s just another organ. People will readily admit to taking medicine for high blood pressure, but if I am taking medication for some kind of mental problem I’m having, I’m supposed to hide that.’”

“With people like The First Lady, Michelle Obama; the Royals of England and singers like Demi Lovato on our side, we are changing the tide,” I thought to myself as I walked onto the U.C. campus. “Through Challenge the Storm and NAMI, I am also doing my part.”

According to research, “getting to know someone who has lived both the pain of illness and the resilience of a recovery journey changes hearts and minds, which leads to actions of inclusion, support and hope. And getting to know many people and their stories has the broadest and longest lasting impact.”

When it was my turn to speak as we began our “In Our Own Voice” presentation, I stood up in front a sea of strangers and said, “Hi! My Name is Danei Edelen. I enjoy writing, exercising and learning about nutrition. My dark days began when I went five nights without sleep, started hallucinating and checked myself into a psych ward…” The power of organizations like Challenge the Storm and NAMI is far greater than one may imagine. The simple act of reaching out that day may have saved the life of John’s daughter.

Author’s Postscript: After a week in the hospital the doctor found the right cocktail of medications for Mary without the dreaded side-effects. Also, Mary told me she realized, “Mental illness is a disease.” She has started her new job, is learning to manage her illness and reclaim her life. It is gratifying to see her blossom.

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What It's Like to Be a Health Care Professional With Mental Illness

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I find myself juggling between the therapist’s chair and the patient’s chair. I know, it may seem odd. I’ve always heard if you lived with any kind of mental illness you wouldn’t be suitable to be a health care professional. That’s what I was told in college when I was studying to be an occupational therapist. Truth be told, I only realized I was sick when I was already in college (the change of environment was actually the main reason why my anxiety had gotten worse). Maybe if I had known how sick I was back then, I never would have kept on studying to become a therapist.

How could I? How could someone who struggles with agoraphobia with panic disorder and depression help someone else with their own problems and disabilities? How could someone in my position think they were suited to help anyone else? How could I not think about my future patients and their well-being? Well, I did think about them, and about each one of these questions. They were partially the reason why I kept on studying. I wasn’t going to let my disability define who I am. Do you know how I could do this? Because it is only an illness — a horrible, debilitating illness, but still, an illness. And I think sometimes we forget about that. We think it’s us. Because it can drain you in a way that can prevent you from even recognizing yourself anymore, making it really hard to find what’s still left of you in the ashes.

I honestly feel like I don’t have any value all the time. Sometimes I don’t want to leave my house, but I do it anyway. I don’t want to meet a patient because I get too anxious. I don’t want to sit on that chair because it’s too far from the door, and what would happen if I felt bad and needed to leave? What would happen if I made a fool of myself in front of them? Why am I still doing this?

This is my illness; it’s not me. And it doesn’t stop me from working and pushing on. Well, sometimes it can stop me, but not for long. I’ll never allow that.

I always find my own strategies to keep going even if my body feels it can’t. I always prove myself wrong.

If anything, I have a whole different view from my co-workers about depression and anxiety: a patient’s view. I’ll never truly know how someone else feels, even if they have the exact same type of disorders I do. But I can understand the despair and the pain. I can understand how they feel the stigma, the lack of understanding and empathy from others. I can see them beyond their illnesses — and not just the mental illness patients, but every patient. And that is something I feel is missing in our health care system, where many times patients appear to be seen as a diagnosis.

You don’t need to have a disability to help someone in need; it’s obviously not a necessary condition. But you don’t have to be “perfect” either. That’s why I kept on studying and why I still do it everyday.

And don’t get me wrong, I understand I have my limitations. As all of us have. If I feel I can’t work with a specific case, I have the responsibility to pass it over to a co-worker. But that is something transversal to everybody, because everyone has their own issues and limits. And I’m no different.

Yes, I juggle between the role of the professional and the role of patient, and I think that’s so important. To make people realize there’s not a real wall separating us. I believe there are no “ill people” and “well people.” There are just people, and we’re all a big mix of everything and we try our best. That’s all we can do.

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When All You Can Do Is Breathe, Just Breathe

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This morning I woke up anxious and moody. I wanted to stay in bed, lie in the dark, bury my face in my pillow, and pull the sheets up over my eyes, but my daughter needed me to get up, and so I flung my feet onto the wooden floor.

I putzed around the kitchen — fixing her breakfast, brewing coffee, and finding the “right cup” for her milk — but I was still off. I wanted to scream and cry.

So I turned on Dora and headed upstairs.

I closed my eyes, inhaled, and started to count.

Ten.

Nine.

Eight.

I let my heartbeat dictate my pace. I held onto my breath until the space beneath my ribs burned. Until my lungs were on fire. And then I exhaled.

With strength and veracity, I let it all go.

Seven.

I inhaled again.

Six.

Five.

But by five, my thoughts were racing. By five, my mind was wandering and, distracted and frustrated, I exhaled.

l considered giving up and walking away.

The truth was I already had too many things on my plate. I didn’t have time for stillness and meditation and deep breathing. But instead of standing, I stayed with it. Instead of running away, I stayed in the moment and I took another breath.

Instead of leaving, I inhaled.

Four. My muscles began relaxing.

Three. Things were settling.

Two. My heart was slowing.

One. Time to exhale. Time to take another breath.

Make no mistake: I wasn’t better. Not by any stretch of the imagination. In fact, I was still frustrated and on the verge of tears, but the point isn’t whether or not this moment fixed me — whether counting to 10 saved me or my sanity — it was that I chose to take this moment, and these breaths, at all.

Because sometimes we get so caught up in tasks and to-do lists, the needs of others, and life that we lose sight of what is really important, and what really matters. Sometimes we lose sight of our needs and ourselves, but one minute, or one moment, can help refocus our attention.

One breath might help change the course of your day.

So when you feel angry and annoyed. When you feel your fuse is short, and the fire is close, breathe.

When you feel downtrodden and desperate, when you feel invisible and insignificant, breathe.

Stop and breathe.

And when you feel worthless, ugly, hurt, bad, sad, or disrespected. When you hate yourself. Remember to pause, count to 10, and breathe.

Breathe.

Because we are worth 10 seconds, and 10 moments. We are worth 10 breaths, and sometimes what we need to do is breathe.

Sometimes all we can do is breathe.

For more mental health stories, visit Sunshine Spoils Milk or follow Kimberly Zapata on Facebook.

A version of this post originally appeared on Sunshine Spoils Milk.

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Defying the Picture Society Paints of People With Mental Illness

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I have been recently discovering a lot of snails in my garden. I, in my tendency to succumb to the seduction of a silent reverie, found myself wondering about snails, their purpose and why they are the way they are. Why a shell? Why have they their houses on their back?

Then, I thought, “Snails are independent in a weird way.”

They rely on themselves for their shelter and their security, unattached to anything but themselves. They travel leaving only a trail of glittering experience of the path they’ve taken, despite how long it has taken them.

A snail didn’t choose to be a snail. It didn’t choose to be slow and burdened with its shell, but despite its wavering purpose in nature, it still carries itself. It still travels to a new place, independent of all that surrounds it and irrespective of what humanity thinks of it.

With its beautifully grotesque shell, intricately designed by the hand of nature, the snail climbs up walls, unaware of what is before it, never questioning. It goes on, until a bird comes and ends its insignificant life, fulfilling its purpose as a meal for its avian predecessor on the food-chain, and the world goes on.

I think, perhaps, I’m like this snail. I, too, am burdened by an unreckonable force upon my back, my mental health. With such a heavy burden, I’m tempted to wait in hope of a winged figure to pluck me from the perils of my physical encasement on this Earth. Despite the weight and the fear of an ominous shadow, I have become accustomed to it. I, too, can keep going despite what humanity thinks of me. It’s only with my “beautifully grotesque” mind, my perseverance and struggle that I can leave my glittering trail of experience.

Perhaps, my purpose is to show that despite the weight of my mental illness, I can still travel to new places, explore new grounds and live, unattached to the stigma and social “impressions” of what it means to have a mental illness. To show, that despite all the odds, I can still live.

I have come out of my shell and accepted who I am. My mental illness has conditioned me to be strong, to persevere through everything life offers. I chose to turn something negative into something positive. Going to therapy, taking medication and working on myself holistically has taught me to realize I can have control over how I feel.

I consider what I thought was a curse to be a blessing. I feel blessed because what was once a burden is now a monument that signifies my success through the toughest struggle I’ve ever endured, and I’m leaving my glittering trail of experience.

Living with a mental illness doesn’t define who I am as a person. Having a mental illness does not make me any less a dreamer, any less a daughter, sister or girlfriend. Being a snail doesn’t mean it’s any less an insect. Having a mental illness means I just have something extra to deal with in my daily life.

There was a time when I considered myself “cursed,” questioning why I was given such a struggle, convincing myself I was being punished. How I perceived my mental health is indicative of how society can penalize and ostracize anything or anyone who is considered “abnormal” or “taboo.” In the daylight hours, society doesn’t blatantly outlaw those who have mental health issues. In fact, it encourages inclusion and well-being of everyone.

It’s only in the dark corners of quiet moments, when the day has yawned and the tie is pulled off, that the other face of society looks warily from the corner of its eye upon us and wonders if we are actually monsters like the people in those horror movies.

Society paints a sloppy picture using only limited colors to portray those with mental illness. We deserve to be painted by our own experienced hands. We, who have experienced the inner turmoil that mental illness can cause. If each of us could choose to contribute to what mental health looks like using our own artistic technique, our own stroke of the brush, our own unique color upon the canvas of society, then perhaps the art depicting mental health wouldn’t be abstract art but instead naturalism, a reflection of our minds and our struggles, beautiful dashes of color with trails of glittering experience.

We owe it to ourselves to keep going and to make our own purpose despite what nature has given us.

This post originally appeared on The Red Dutchess.

For more on this journey, follow The Red Dutchess Facebook page.

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Things People With Mental Illness Needed to Hear at Their Lowest Moments

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People with mental illness describe what they needed to hear when they were at their lowest point.

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We Can't Ignore the Fort Lauderdale Shooting Suspect's Mental Health

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There’s something we need to talk about it. It involves mental illness, violence and guns – three words that, if you’re like me, induce an involuntarily grimace when used in the same sentences.

But, two things are true:

1. People with mental illnesses are not more violent than the general population and in fact are more likely to be victims of violence.

2. This November, 26-year-old Esteban Santiago visited the FBI office in Anchorage, Alaska, claiming U.S. intelligence had taken over his mind and were forcing him to watch ISIS propaganda videos. He was brought to a hospital for a mental health evaluation. The police confiscated his gun. A month later, CNN reported, he got his gun back from police headquarters.

Just last week, he used that gun to kill five people at Fort Lauderdale-Hollywood International Airport in Florida.

Right now, we don’t know what the mental health evaluation said and whether he’d ever been “officially” diagnosed with a mental illness. We know he checked himself into treatment voluntarily, but we don’t know his circumstances when he got out. We don’t know what kind of support he had from his family or friends or whether or not that would have mattered.

What I do know is that this incident is unacceptable, and I don’t think we should pretend it didn’t happen.

Too often after a publicized shooting, the “aftermath” conversation turns into a two-sided, black-and-white debate: you’re either in favor of tighter gun control, or you think the answer is better mental health services. Gun control is assumed to be the more “liberal” view, while conservatives like Paul Ryan have used fixing the mental health system as an alternative to fixing how we sell/distribute guns.

What has always bothered me about politicians like Ryan, who suddenly have something to say about the mental health community after a shooting, is that they speak as if the only pressing reason to fix the mental health system is to prevent shootings — to save “us” from “them.” Not because people deserve access to basic care, but to protect anyone innocent who might get in a “crazy” person’s way. In reality, it’s not that simple. And those with mental illnesses only cause 1 percent of gun violence against strangers.

To quickly distance ourselves from every act of violence perpetrated by someone with a possible mental illness also doesn’t tell the whole story. Because there is a connection between untreated serious mental illness and violence, especially when substance abuse is involved. But where does this fit into our “end the stigma” narratives?

I think it’s time to make some room.

What if instead of limiting our “after shooting” dialogue to gun control vs. health care, we opened up the dialogue that badass advocates are already having? We need to fix the gaps in our mental health system, not only for people who are asking for this help, but also for those who are more at risk for violence. Yes, we should talk about gun control, but instead of pushing ourselves away from people who quite possibility wouldn’t be violent if they were properly treated, what if we used their narrative to highlight the gaps in our system? We too often let the media run the narrative, splitting the issue down the middle. I’m wondering if there’s a way to paint a narrative that acknowledge violence, but doesn’t perpetuate stigma.

What if there was compassionate and adequate care for Santiago? What if someone made sure there was some kind of treatment plan/any plan before he was released from care, and before he was given back his gun? Can we have compassion for his situation without aligning ourselves with what he did? It’s also fair to note he was charged in a domestic violence case in last January. What if proper precautions were taken after that?

I don’t have any answers to these questions. I don’t know whether “the right” mental health system could have saved him and the people whose lives were lost. But I do think it’s worth talking about when there’s such a clear gap — we’re not doing ourselves any favors by ignoring it.

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