As we are exposed to both the potential health impact and the media coverage of COVID-19, many of us shelter in place and may also struggle with financial, food or shelter insecurity. Many professions are on the front lines and people risk contact with this virus every day. In this time, I have noticed a variety of advice on how to handle this challenging time. I am a clinically trained person who also lives with PTSD, and I have concerns about recommendations that either may underplay the effect of our current conditions or may inflame anxiety and other health symptoms.
Some information may unintentionally downplay the effect of living under the current conditions. For example, it is very difficult to be productive during a crisis. If you have the capacity to work, teach your children, be creative, or find other outlets such as learning new skills, I applaud you. However, it is entirely normal to feel more fatigued, anxious, overwhelmed and more irritable than usual. Part of your energy is dealing with your valid fears related to this national emergency, so these reactions are common. Anxiety might also take different forms. While panic attacks are one manifestation of anxiety, there are others that many may experience during a challenging time. For example, anxiety surges are uncomfortable waves of discomfort that affect your nervous system and may be accompanied by bouts of crying. Other symptoms such as what I call anxiety sickness might emerge, including lightheadedness, dizziness and stomach aches in addition to fatigue and irritability.
Other information might be well-intended but may only serve to increase health symptoms in some people. Scientific projections, for example, are useful to those directly addressing the pandemic. But for me, looking at this information – which I can do nothing about and to changes frequently – only upsets me. While I trust the scientists to do their work, my main job right now is keeping myself as healthy as possible to do my work. This means protecting myself from what can seem like endless information and speculation.
Currently, in order to cope, I practice radical self-acceptance and self-compassion. I am afraid and at times I experience fight, flight or freeze, and this is normal. I take the advice I believe is helpful, and I leave the rest. I cannot accomplish everything I used to before the pandemic. I set goals and complete what I can. For me, drinking water, eating well, and exercise – even a short walk everyday – are essential. My cat Willow and I cuddle to start the day. I limit my exposure to the news and Facebook. I connect with people over text, email, Facetime, video and audio calls. And I allow myself significant rest time.
I refuse to think that our current situation is a “new normal”. After the pandemic, I believe normal might be different, but I choose to focus on familiar things that anchor me in this day, this minute, this second. For me, this means maintaining routines, such as playing our familiar radio station, going on a drive for take-out coffee, and having a regular sleep time.
So, accept how you are feeling right now, do what you can to maintain your health, stay in your moment, and connect with who you can. There is certainly grief in this time. But, as with all seasons, warmth will come.
Now that I plan to have a draft of my first book - Deceptive Cadences - finished by the end of the year, I plan to share some segments on my blog. Please get in touch if you have any feedback.
My book begins with my second hospitalization. This was one of the worst periods of my life, because my second hospitalization - after my first in 2010 - confirmed my condition is permanent. My diagnosis is now Complex Post-Traumatic Stress Disorder with Psychotic Features. Interestingly, Lady Gaga just revealed in an interview she has experienced both PTSD and psychosis. I think this combination is less unusual than I was first led to believe. So, feel free to reflect and respond on this piece of my work. I also performed this chapter of my book at a Moth-inspired Storytelling event that is also posted on my Blog.
We Are Gathered Here Today
To Get Through This Thing
Called Life -
Prince - "Let's Go Crazy."
I am not there, I am here. Again. I am still trying to figure out how. The second time - it is much worse than the first.
There. Now if I were There - That's Richard and I together. That's what we do. That's how we met. We lived under the Santa Cruz Mountains, where you follow Route 17 upwards. Last week, we had gone down to Main Street in Los Gatos, walked in the park, ate at the empanada lunch place, and stopped by the knitting store where I had bought the rainbow baby sweater project. Our latest destination is The Happy Dragon, a second-hand store, where recent vacationers from Hawaii dump the shirts they will never wear again. Which is just fine by Richard, who picks up each designer label.
“Look at this one, three dollars - that's a $60 dollar shirt” he says victoriously. It's been almost ten years since we’ve been a couple, and there’s a 25 year age difference between us. Despite his Midwest roots, Richard fits right in here in the in Silicon Valley, with his fluffy white hair that every woman in a grocery store wants to run their fingers through. As does his love for tropical shirts. And unlike wintery New England where I am from, here my monarch butterfly tattoo freely flutters year-round on the back of my right shoulder as we happily wander the streets. We are hippies living among millionaires.
But here isn't there. This is just a box, with white walls and grey paneled ceiling. No mountain, not even a picture, and I don’t have my rainbow sweater knitting. An odor of rubber hangs in the room, not the smell of a pencil eraser, but like a dark, sweaty commuter train at 5pm.
It’s the net that has captured me. White, grey, white, grey, grey, white.
Before, when I was in graduate school a couple of years ago, they had told me my experience was a one-time thing, a bad trip. As I hugged a friendly pillow in my therapist Dr. Minsky’s office, he explained, "Getting past this, it's doable." He had always worn a beret, and smiled infectiously from behind his graying beard.
"Why did it happen to me?" This question wrapped up my mind.
He shrugged. "It happens to a lot of PhD students."
I think to myself. Define a lot...
This morning, I had tried to prove everything was fine. Even though Richard had asked me to call in sick when I got up - it seemed like a normal day. I was a social worker at a college counseling center, so a day off sounded fine. I still headed for Starbucks, my first everyday destination.
But my husband yelled after me. "Where are you going?"
I didn't understand- what's the big deal. It's the same place I go every day, the same Grande Cafe Mocha, and I had brought my diamond and pink journal, so I could continue to record the signs. It had silver eyes, kaleidoscopic. The notebooks are one of the identifying features of people who have the Gift.
When I got back, Daniel, our priest was there. This made perfect sense to me. I had written a message in my journal asking Daniel to come. We had met with Daniel the day before because Richard was having problems at work, and I had declared that I had unusual powers. He hadn't reacted, except to recommend a consultant to Richard, and Julian of Norwich to me. But since I had asked him to come to our apartment through writing it in my journal, I wasn't surprised he was here. It was because of me, right?
So they were talking and I began deciphering the formulas. I had wanted to demonstrate the Gift to Daniel, to show him I knew. I thought, with his background, that he would understand. I wanted to impress him. So it was rude that he took the journal from me without asking, looked at it, and then put it back in my lap. But maybe he saw what he had expected to see?
Of course I had agreed to Daniel and Richard’s plan that I see my psychiatrist Dr. Dean, as I believed she could certify my sanity. Hadn’t she recently complimented my progress without the medications? They decided to try to take me off of them, because everyone believed what had happened a couple of years ago was a fluke, a one-time thing. After being vetted by Dr. Dean, Daniel would accept me as an apprentice and help me to develop the Gift.
I had even volunteered to drive to her Psychiatry Office.
But, here was the problem - when we got there, Dr. Dean wasn't there. She was on vacation. We were diverted to a women I didn't know.
That’s where things fell apart. She didn’t know me, so she didn’t understand.
A few weeks ago, WBUR 90.9 FM published a deeply misinformed and stigmatizing article that suggested treating people with mental health diagnoses as potential mass shooters. We're proud to say that a response piece, written by our own Lenny Somervell and Jenn Morazes, has now been published in DigBoston. It's on all of us to fight back against the harmful stereotypes and stigma that get hurled at people with mental health diagnoses.
A licensed physician and columnist should know better.
BY LENNY SOMERVELL + JENNIFER MORAZES OF THE DISABILITY POLICY CONSORTIUM
The following is a response to a June WBUR column by Pranay Sinha titled, “My Patient Could Have Been A Mass Shooter.” It included lines such as, “How many patients leave their busy doctors’ doorsteps with unexpressed murder in their hearts? Could doctors stop a few shootings just by paying more attention to patients with risk factors for violence? Can we really expect overworked physicians to identify would-be mass shooters in frenetic 15-minute appointments?”
Pranay, I could have been your patient.
I am a person living with PTSD. As part of this diagnosis, I have experienced psychotic symptoms. The first time I experienced these symptoms, I was frightened. I was a PhD student at UC Berkeley, ironically studying stress in the context of social work and education. I did not know what was happening.
I went to the counseling center with my husband. A doctor looked at me through a window to make his assessment. He never introduced himself to me or explained what I was experiencing. I was put in handcuffs despite not displaying violent behavior, brought half a mile up the street to the hospital via ambulance with sirens blaring, and told my husband had to leave my side while I completed an intake in an inpatient setting. I was terrified.
I am a normal person with a medical condition. My medical condition necessitates certain supports. With these supports, I have a successful career. I have been symptom-free for four years. But because of articles like yours, I fear for how my career, housing, and other opportunities will be affected if someone finds out about my condition.
Pranay, my colleague could have been your patient. But, so could have many others. And many you are worried about would have never been your patient.
One in five people in the United States lives with a mental illness. As has been cited many times, most individuals with mental illness are not dangerous. In fact, mental illness is not implicated in 95-97% of instances of gun violence. Those with mental illness receiving treatment (whether in the form of psychiatric medications, behavioral change, or lifestyle adjustments that mitigate their condition) are no more dangerous than someone in the general population. Individuals with serious mental illness are more likely to be victims of violence. But rather than these facts, our society amplifies the image of a violent killer to depict a person with mental illness. Mental health is an important topic in our country, but it is no accident that it is only brought up as a topic of national discussion when a shooting spree occurs. It’s a convenient cover for productive discussions about gun availability and addressing toxic belief systems and entitlements such as racism, homophobia, or misogyny.
An abuser who terrorizes and brutalizes their victims is highly unlikely to ever be your patient, Pranay. Their victims, however, probably will be.
If someone perpetrates or plans a mass shooting, that does not mean they have any currently recognized mental illness. If someone survives a mass shooting, however, they almost certainly will develop one.
The fact is, being a young, white male is a greater risk for violent behavior than having a mental illness. Acts or expressions of misogynistic violence are one of the single greatest warning signs for mass shootings. US society loves to use the specter of the scary crazy person as a smokescreen to avoid confronting the much more uncomfortable truth that white supremacy, misogyny, and homophobia have bred a violent entitlement in some of our citizens, and that we have armed them. And so, we follow the “proud” tradition of blaming the victims—and the stigma of their diagnoses only grows with each rehashing after another tragedy.
Despite malicious stereotypes, the sloppy logic that people who live with schizophrenia, psychosis, PTSD, bipolar disorder, personality disorders, depression, or anxiety are necessarily dangerous solely due to these conditions is false. These conditions alone don’t cause us to hurt people, do not turn us into violent, unstable, and disturbed villains devoid of reason. They do make us uniquely vulnerable, often to the same angry white men everyone rushes to armchair diagnose after yet another public slaughter. Often, the instigators of these tragedies do not meet diagnostic criteria, or, even more troubling, their diagnosis played no part in their decision to kill.
Pranay, I will never be your patient.
Reading your story makes me less likely to see a mental health professional. Last month was mental health awareness month. Many will never seek treatment because of the stigma associated with it—including the stigma of one’s conditions being associated with violence. Thanks to your article, I now know that there is a good chance that, if I were to consult a mental health professional, rather than receiving understanding, support, sympathy, or help, I would be met with disgust, fear, and an assumption that I am dangerous to others. I would have to worry about my symptoms, words, facial expressions, and demeanor being described derisively and disturbingly to friends at parties, or to the public in articles on the internet. I will never be your patient because I would be terrified that, rather than giving me help and support, you would lock me up against my will and force medications on me through a court order that may have detrimental side effects and give me little or no say in the process. Despite your intentions, you have communicated to those of us who are struggling and might benefit from treatment that we are monsters who do not deserve to be treated like human beings, and you have communicated the same message to everyone around us as well. I will never be your patient, because I will not subject myself to this dehumanization if I can help it.
In your article, you wonder how many patients leave their doctors’ offices with violence in their hearts. What you should be asking is how many people leave their doctors offices feeling they have not been taken seriously, and with their care needs still unmet.
Lenny Somervell and Jennifer Morazes are directors at the Disability Policy Consortium.
Just A Leg Up? A Reflection Inspired by the College Admissions Scandal
Jennifer Lynne Morazes, PhD
On the day I received my acceptance to Harvard University, my mother cried. These tears conveyed not joy, but the fear and frustration of a single-parent who worried that my acceptance was a tease. There was no way, with our background and income, that the acceptance would translate into the reality of a Harvard education for me. My mom had raised my brother and me on less than $20,000 a year, and I would be the first in my family to attend college. Starting with Harvard appeared too optimistic.
Yes, I completed Harvard, but it was at a time before the term “first-generation college student” had gained traction and before full tuition offers. I felt an outsider due to my class background, yet my experience of “other” was not purely due to finances. Students with college-educated parents appeared so much more prepared, easily talking about the pros and cons of different professors and secure in either knowing or not knowing their path. According to a recent national study, one-third of first-generation students dropped out of college after three years, compared to 14 % of their peers whose parents had earned a degree, and first-generation students are less likely to complete their degree in four years, encumbering more of a financial burden.
Later, my mom would again express concern when I announced my plan to move across the country for an MSW/PhD program at the University of California, Berkeley. First-generation PhD students also face considerable challenges. Why was I doing this again? Shouldn’t I just “go to work”?
My answer - given my background, education meant a promise of stability. However, an unanticipated health event during my PhD program threatened this promise for me. Although I recovered from the initial manifestation of my condition and completed my degree, I was confronted with the fact that I would now live with a mental health disability going forward. Unfortunately, this fact would mean an additional disadvantage for my trajectory. Twice as many students with disabilities drop out of higher education, and only 30% of working-aged people with a disability are employed.
Peering over the challenges of education, wealth and health, I had reason to worry about my future self. When I think of those that are wealthy and/or educated, the advantages are apparent. Those with means can travel extensively for college trips, can afford fees for standardized tests and applications, can hire tutors, can network with family and friends with college and professional experience, and can leverage their cultural capital as the in-group for opportunities.
The playing field is already skewed. So, it is difficult for me to understand the rationale of an additional “tip” – just a leg up as has been described - in the university admission process for wealthy applicants when it is already tipped in favor of those from college-educated backgrounds without disabilities. And employment after graduation even with a BA or higher favors those that are “able-bodied.”
Even more painful for me is considering the misuse of disability accommodations by those seeking an advantage. Not only do I have my own lived experience, but I work in an agency staffed by people who are Deaf, those whose mobility is only made possible by wheel chairs, those who have experienced brain surgeries for epilepsy, have other neurological differences, or are blind. Accommodations are not a loop-hole, they are a way of making society fair. We are no less capable, yet access and support in education and employment can be difficult to find.
Luckily, the tears of my mother watered seeds within me, but not without strain, and unanticipated hurdles. She now beams with pride for my achievements. However, my road sometimes felt full of potholes and without a guardrail. Education and meaningful work were not assumed or guaranteed. So, when I think of my educational road and career path, I think more of the relief in my mom’s eyes rather than a desire to get “ just a leg up.”
This post featured in the Mighty and Yahoo.
"I want to go home," I say to the hospital psychiatrist. I miss my husband, and I do not understand what is happening.
“Subtract 7 from 100, then keep going,” says the psychiatrist.
"But I am a college graduate. I am finishing my PhD" I pleaded.
He looks at me. On the best of days, I wouldn’t be able to fulfill his request. Numbers were never my strength.
I am silent. He shrugs.
“It’s a simple test of concentration,” he states. “Now, can you join the others?”
I had worked in community mental health. I had earned an MSW and PhD in social work. As a first-generation college student coming from a low-income background, I was determined, resilient. But, beginning in 2010, a year before I earned my PhD, I experienced my first psychotic episode. I was involuntarily hospitalized. Over the years, as doctors worked to adjust my medications, I experienced hospitalization seven times. I have been hospital-free since 2015. But, I was both a professional and a "professional" patient. I finished my dissertation and worked full-time even as I lived through this health crisis.
I currently work as a director in a disability organization. I have experienced the challenges of both health concerns and stigma. And now I sit, telling my therapist how psychiatrists - and the mental health system generally - really does not understand psychosis.
Psychiatrists, I felt initially, had cavalierly prescribed medications, then just as cavalierly changed them. Eight years later, I am thankful for the set of medications that allows me to live meaningfully. But initially, my body rebelled against the first prescription and my nervous system reeled. I went to the ER because I was in so much distress, but nothing could remedy the reaction until the medication left my system. My psychiatrist was confused. "Why did you go to the ER, what did you think they could do?" he asked. "I just wanted the sensations in my body to stop," I explained.
It's difficult when the search for a cure also disrupts your body and mind.
Yet, faced with psychosis, I was overwhelmed and scared. I thought I was receiving clues, from lights, TV, music, my computer, my phone. Even if I took a walk outside, signs and orange cones seemed to be clues to a greater puzzle. I thought that if I took a wrong turn, failed a test, failed to understand the meaning of a song lyric, horrible things could happen to my friends and family, or I would be personally punished by God. Most of the scenarios in my head referenced abusive experiences I had endured in the past, now amplified.
The first time I was brought to an ER, I was put in handcuffs, for being sick. I was only confused and quiet. At one point, I screamed in an ER while I was awaiting placement in a hospital because I believed the Devil was taking over the world. Rather than ask why I was distressed, a team of people rushed in, tied me to the gurney, and injected me with Haldol. My husband had been on his way to see me, and I am so sad that he had to witness me in that position.
Psychosis does not end when the medication finally works, if it does. At least, it did not end for me. My mind remained confused. Processing information slowed. My nervous system was hyper-reactive. I did not feel fully recovered for at least a year.
No one knows what caused my break, and initially I was told it was temporary. Eventually, I came to understand my experience as post-traumatic stress disorder with psychotic features. And the condition was not temporary - despite the optimism of some of my doctors, I eventually had to accept my condition as permanent. Also, with each attempt to take me off medications and despite my best efforts, I could not recognize my own return to psychosis. Each time, I lacked this insight. One psychiatrist asked me "You do know the devil is not taking over your soul, right?" He was very kind and concerned. I responded, "I wish I did, but no, that's what I believe."
What do I wish people understood better given these experiences? Here are five main points:
1. Even if the person cannot express it, they are likely terrified, and will probably remember afterwards what happened to them when they were psychotic.
Many times people with psychosis are only depicted as scary, violent or dangerous. However, someone experiencing psychosis is more likely to experience violence than perpetrate it. I was terrified. I remember the beliefs I had when I was psychotic, and how people treated me. The people who were most helpful were not scared of me and recognized it was me who was really afraid.
2. Ask someone what is making them afraid. Do not jump to restraints.
If someone experiencing psychosis screams or yells but is nonviolent, ask them why they are afraid. Reassure them you will help keep them safe. Ask if they would like something to calm them - their phone with music, a pillow to hold, or someone close to them to wait with them.
3. Psychosis does not end when the medications work or other interventions work.
Psychosis is traumatic. It's difficult to feel like you cannot trust your mind. The experience should be treated like a potential trauma in itself, as should involuntarily hospitalization. The mind and nervous system need to recover. I started running. This allowed me to discharge anxiety and feel strong again. One hospital I stayed in had a garden and exercise equipment - which was much better than restraints.
4. Remember the person experiencing the episode is a human being.
My initial story about the doctor who dismissed me shows that too often, professionals treat patients in a dehumanizing way. It probably never occurred to him I was lonely and that I really was finishing my PhD. Also, it may not have occurred to him that I really did not understand what was happening. Take the time to orient the person to the situation. A person is not their symptoms. People receiving treatment want to be recognized as valuable.
5. Psychosis also traumatizes family members.
My husband so often was left baffled about what was happening to me. He called social workers who never returned his calls. He wondered why doctors were in such a rush when he wanted answers. He was scared too. Family members deserve kindness and support.
I am a mental health professional who has been recovering for eight years. And although I have had painful encounters with stigma that have affected my trajectory as much as the illness itself, I believe those of us in the field that have experienced psychosis can contribute an important voice. Those who experience psychosis deserve a holistic and human approach, one that builds upon the person's resilience, rather than further depleting it.
So last week, I performed in a Moth- inspired storytelling event. It wasn’t an event about mental health- which is why I did it. Others spoke about when they came out as gay or having cancer- and by performing alongside them I want to normalize mental illness. The story I told is the first chapter of my book- about the significance of my second hospitalization. Feedback welcome!
Yesterday was not a good day, but I thought today was a better day for my reflection. It is tiring and frustrating to have to assert your worth, in my case because of my health status. Yes I try and overcome and address my anger with poetry, with boxing- playing the brave superhero- but there are days I feel unheard, misunderstood, not enough. I’ve lost important things as a result of my health status. So some days just aren’t good days because I get tired. Tired of all the things I have to do just to keep going.
Today is better. But it doesn’t wipe away all the pain. I share this because it’s true and I’m sure it’s true for others.
Similarly, as we acknowledge Martin Luther King Jr, remember it’s not just all statues and street names. He died because of his fight for equality- because as we have blatantly seen-many people do not believe in black folks common humanity. Especially right now, we need to take that in.
The presentations I do at schools, hospitals, family groups, etc are for the National Alliance on Mental Illness here in MA. I present on my experience living with mental illness, from my dark days to my successes. My first for this program was in March. In my evaluations, the number 1 thing people say is- “you are so brave.” Brave? I don’t feel brave. I feel COMPLETELY PASSIONATE AND COMPELLED. This is what I should be doing. It’s in my spirit.
Mental illness has affected every aspect of my life since it arrived in 2010. And mental illness is NOT treated the same way as a physical illness. And that is my mission- they should be. One example- If you have a hip replacement, afterwards, a person comes to your home for rehab. If you are hospitalized for a mental illness, you are lucky to see a Dr once in three days. You are usually discharged without ongoing support. It’s lonely and hard.
So brave? No I do not consider myself brave. I am telling my story. In the New Year, I will be using this Genesis page for more writings, videos, and other content. If anything, I want us to love and understand each other more deeply. And that, I feel, is a good use of my life.
Hi everyone- I am sharing my performance from This Is My Brave Boston here on my website. You might ask “why? Isn’t that private information?” Well, if someone tells you they have diabetes, does that make you uncomfortable? Or a broken leg? My goal, and the goal of many others, is to make talking about mental health as normal as any other condition.
Also because of the present stigma, talking about mental health also saves lives. Please share my story. I want people to know they can overcome even deep adversity and that there is hope.
And because it’s Giving Tuesday-consider This is My Brave.