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How I Learned to Advocate for Myself

I’ve been enjoying all of the content online for Mental Health Awareness Month, and I thought I’d contribute my own story. Here’s my own experience of why advocating for yourself is important.

I have severe psoriasis, an autoimmune skin condition that makes itchy, flaky plaques where my skin cells regenerate too quickly. During my recent hospitalization (for severe depression), I let my doctors know about this in a brief, it’s-not-that-relevant-but-you-asked kind of way. When the psychiatrist asked if I had any physical conditions, I informed him of my psoriasis.

A few days later, I was meeting with my social worker to discuss my treatment plan. Under “diagnoses”, Major Depressive Disorder and psychosis were listed. Before I even said anything, my social worker quickly brushed it off and said “don’t worry too much about the psychosis- it might just be that you were confused when you came in”.

Now, I’m the kind of person who will eat the wrong food at a restaurant rather than speak up and point out a mistake. I’m the kind of person who willingly takes the middle seat on an airplane because my neighbor explains that she has to pee a lot. Seriously. I am not assertive.

However, diagnoses are a whole ‘nother bucket of fish. When I saw that on my treatment plan and heard my social worker minimize it, I made it clear that I was confused by it and wrote my concern in the questions portion of the form. The next time I saw the psychiatrist, I steeled myself in preparation to ask about the mysterious psychosis that I definitely didn’t have. Before I could bring it up, he sat down, sighed, and said “it turns out that they couldn’t read my handwriting and thought I wrote ‘psychosis’ when really, I wrote ‘psoriasis’. It’s all fixed, now.”

I laughed about it at visiting hour that night and for many nights after. Really, we’re still laughing about it. We’re getting some serious mileage out of that one.

The important thing is that I spoke up for myself and that it got remedied. I almost had an incorrect diagnosis which could have caused more confusion down the line. So, speak up! If something doesn’t look right or feel right, let your doctor know. They’re people too, and sometimes mistakes happen.

Also, handwriting is more important than you might think.

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Levels of Mental Health Care

In light of my recent posts, I thought it might be useful to elaborate on the levels of mental health care you can find in a hospital setting (at least in the US). What are the differences between them, and what can you expect from each?

Inpatient Treatment

Entering a hospital as an inpatient for mental health care can be incredibly nerve-wracking. If you don’t know what to expect, the experience is overwhelming. The important thing to remember is that the system is designed to keep you and the other patients safe.

In an inpatient setting, you sleep at the hospital and spend your days on the unit. You might have a roommate; they’re probably just as overwhelmed as you are. The staff will likely elaborate on the expectations for patients, but you may be expected to spend the majority of your time in a common area, interacting with other patients and staff. Your nurses and doctors will want to see that you’re participating in group therapy, willingly spending time outside of your room, and eating meals with the unit. You’ll meet with your doctor and a social worker, and have a chance to discuss your treatment goals and any concerns you have. Different hospitals have different timeframes for this; you could meet with your doctor as often as every day, although it may happen less frequently.

Before you’re discharged, the staff will probably want to be sure that you have a support system, safety plan, and aftercare set up. Continuing mental health care might look like a partial hospitalization program, intensive outpatient program, or outpatient therapy with your own mental health counselor.

Partial Hospitalization Program (PHP)

The next level down from inpatient care is a partial hospitalization program. In a PHP, patients typically attend therapy for most of the day, sleep at home, then return for the next day of programming. For example, the PHP I did was from 9 am to 3 pm, Monday through Friday for ten days.

Programming usually focuses on teaching skills and information you can use to manage your illness. The PHP I was in took content mainly from DBT, although we also touched on ACT and CBT. You’ll meet with a psychiatrist and your case manager, who is usually one of the therapists who leads group discussions and teaches content. Your case manager will probably set up a treatment plan with you, and meet with you periodically to check in on your progress.

Many people come to a PHP through inpatient hospitalization. After spending time isolated from your normal, day-to-day life, it can be overwhelming to be tossed back into it. A PHP can serve as a helpful step-down to ease you back into your routine. Other people come straight from their outpatient treatment. They may not need the level of mental health care you get with inpatient treatment, but the support of a PHP can give them the structure they need to stay safe.

Intensive Outpatient Program (IOP)

In the same way that a PHP offers a transition from inpatient back into your normal life, an IOP does the same. It’s the next level down from a PHP, but is still, well, intensive. An IOP is similar to a PHP in the content that’s taught, but you meet less frequently and for a shorter amount of time each session, but for a longer overall duration. Many IOPs meet three times per week for three hours. The program might run for as many as eight weeks. The IOP at the hospital where I did my partial hospitalization had a more independent treatment; you didn’t get to meet with a psychiatrist or a case manager. That meant you would need to have outside medication management set up for your time in the IOP.

Many people go straight from inpatient treatment to an IOP, although others may need the structure of a PHP. Some people continue on from partial hospitalization to intensive outpatient, but sometimes that’s not feasible with work or family obligations. I decided not to do an IOP, but rather to return to my regular schedule and leave IOP as an option should I need more intensive mental health care down the road. It’s all very individual, and which program you choose depends on your specific needs and constraints.

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What I Gained in Partial Hospitalization

Two or three days into my partial hospitalization program, it became clear to me that my peers were seeing positive results. At check-in, those closest to leaving would report feeling “good”, or “light”- two sensations that are unfamiliar to my depressed brain. I was glad that they were feeling better, and initially, it gave me a glimmer of hope for myself.

As the days passed, that hope dimmed; I wasn’t feeling much better at all. In fact, as my last day approached, I started feeling lower and lower. My thoughts about self-harm came back in full force, and when I tried to use the skills we’d been taught to combat them, I was unsuccessful. Morning check-in was even more excruciating than usual because I had to admit that I wasn’t doing well. The people who had come before me had felt better, so what was I doing wrong?

For one thing, I wasn’t doing anything “wrong”. The psychiatrist and both therapists for the program all agreed that the root cause of my depression is chemical. This doesn’t mean that coping skills are useless. They can help keep me safe and offer healthier alternatives to my go-to, maladaptive coping mechanisms. Over time, I can retrain my brain to help me get out of negative thought patterns or habits. However, coping skills are unlikely to do much to address the causative problem.

Secondly, there is no right pace for recovery. Comparing myself to others was only making me feel worse. That said, it’s only natural that we look to others to find out what to expect when we’re in an unfamiliar situation. I wish I had been able to temper my expectations when comparing myself to others in partial hospitalization.

Just because I didn’t leave partial walking on air doesn’t mean I “failed”. I still got a lot out of the experience.


Connection

Similar to my experience of being an inpatient at a mental hospital, one of the most valuable takeaways for me was the sense of connection I had with other patients. Hearing about other people’s perspectives on a shared experience helped me gain insight into my own thoughts and behaviors. Plus, it feels good to talk to people who understand your suffering and can empathize. I definitely came away from the ten-day program feeling less alone.

A sense of my own value

The first few days of my participation in the PHP, I was there for my family. I was there because other people wanted me to be, and I was willing to commit my time to a program like that in order to ease my family’s fears. A few days ago, though, I realized that I felt more like I was there for myself. It was a subtle shift, but it feels like a big step.

Acceptance

Throughout my inpatient hospitalization and partial hospitalization, I had several moments that stopped me in my tracks. The fact that I was at that level of care for my mental illness seemed surreal, and I couldn’t wrap my mind around the situation. I think that I have a better grasp on my symptoms and what I need to do to keep them under control. I also have a sense of acceptance that once I feel better, I’ll still need to manage my illness; I won’t be able to push returning symptoms under the rug. That’s how I ended up in the hospital.

Greater understanding of my patterns and behaviors

While the skills I learned may not address the root of my depression, they certainly help me shift my behavior towards healthy responses and actions. Perhaps the biggest behavioral takeaway for me is greater awareness of how I withdraw, isolate, and avoid addressing the issue of my depression with my loved ones.

Patience

No, I didn’t leave partial hospitalization feeling like my peers who had left before me. Everyone goes at their own pace, and everyone has unique circumstances and factors involved in their symptoms. All we can do is go day by day.

Mindfulness and Emotions

If you’ve been keeping up with my posts lately, you know that I’ve been having a rough time of things. I’m waiting for my new medication to kick in and doing my best to implement skills I’m learning in partial hospitalization. Whether it’s the meds, the skills, or just the ebb and flow of emotion, I’m finding myself…feeling….feelings. Wild, right?! The numbness is retreating and being replaced with actual emotions. Which, is good. I think. I’m no longer feeling crushing sadness through a thick haze of nothingness; I’m feeling crushing sadness in a pure, unadulterated manner. But, that’s okay- because it passes. I’m trying to work on my mindfulness skills. The sadness checks in, I sit with it and do my best not to catastrophize that it will stay forever, then my dog does something funny and amusement bumps the sadness out of the way.

Later, I’m outside, enjoying the sunshine when sadness saunters up again and says “Hey. Really sucks that you missed out on all of this pleasantness when you were in bed for days on end, doesn’t it?” Yeah. Yeah, it does. Thanks for that reminder, brain. So then I’m sad about being sad. I’m meta sad. Immediately, worry and despair pop in to let me know that a moment of enjoyment doesn’t fix everything and that I still have a long way to go. Oops, now I’m crying, and maybe I’ve ruined the moment entirely. Quick, focus on the sunshine! Focus. On the. Dandelions! 

Forcing yourself to be mindful is kind of the opposite of mindfulness. Clearly, I have some work to do, which is why this weekend I’m trying to embrace the “non-judgmental” part of mindfulness. Emotions are healthy, and although I’m still feeling more negative ones than I’d like to, it’s ok that they’re there. When I start to feel sad about the past or anxious about the future, the best way to not get trapped in it is to just notice it and then redirect my thoughts. The weather is beautiful, I’m fortunate in more ways than I can count, and it’s ok to take time to heal.

On Being Vulnerable

They thanked me for my vulnerability, but it spilled out by accident, like beads of condensed sadness crammed into a too-small vessel. A wave comes, and while I sit among this circle of strangers, I cry. Nine sad faces avert their eyes. Is this circle a liferaft or a sinkhole?

In the distance, we see life as it should be- a mental ecosystem in balance. For six hours each day, we hover on the edges of the ring, tossing insecurities, worries, and vulnerabilities into the middle. We wait to see if they sink, but often, they float back to us. At three P.M., we depart; a snippet of normal routine, just long enough for our symptoms to impair us under the cover of darkness, then it’s back to the circle again. Soon, each of us will leave and swim to shore, but for now, we are lost at sea. All we can do is embrace our vulnerability and let it carry us towards one another.


 

Last week, I was discharged from an 11 day stay in a psychiatric hospital. This week, I spent six hours every day in a partial hospitalization program. Since being admitted almost three weeks ago, I’ve received more messages of concern and support than I know how to process, and that’s a little bit scary.

A part of me is resistant to receiving so much love because it means that all of these people know about a part of my life that contains a good deal of shame. My instinct is to politely accept the well-wishes and then quietly close the door and never discuss it again. Unfortunately, being independent to a fault can get you in trouble. It can make you more likely to wait too long to ask for help, at which point, the situation has snowballed out of control and it’s a crisis. So, reach out to your loved ones. Ask for help and offer help. Being vulnerable is how we connect.

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4 More Poems From a Mental Hospital

I. Partway Up

The rising sun

seems stuck in its journey,

halted,

partway up

 

while I wake

and sleep,

wake,

and sleep.

 

Disoriented,

the only way to track the time

is by the shuffling

of nurses’ footsteps.

 

Tomorrow, I will rise

and, like the sun,

get stuck-

partway up.

 

II. Looking Out

Cafeteria skylights-

wide squares of sun

move slowly over patients

moving slowly.

 

I crane my head back

and watch a cloud

far, far above this place

dance from one window to the other

 

cotton candy arms spread wide

in a perfect arabesque

that soon diffuses-

and is gone.

 

III. What’s in a Mile?

It’s 24 steps

from the desk

to the door-

to the other is 31 more.

 

The door’s always locked,

but still,

I walk,

If I can keep going, I will.

 

Again and again,

lap after lap,

linoleum lines

as my only map.

 

I lost count

for a while,

but I know

that 21 laps is a mile

 

and it’s 24 steps

from the desk

to the door,

to the other is 31 more.

 

How long will it take

if I pick up my pace

for me and my mind

to embrace?

 

IV. Comparison

My first roommate

left her toothbrush

and some clothes

when she gained her freedom.

 

They put the clothes in a bag,

and then it was just the toothbrush,

small, etched heart on the back

staring up at me.

 

My second roommate

doesn’t notice

the evidence

of the first.

 

She cries in bed,

blanket pulled up over her eyes

while I tiptoe

around her.

 

When she packs up her things,

I wait for the third

hoping this time-

I’ll be the one to leave first.

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4 Poems From a Mental Hospital

I. Constants

In the courtyard

turning inward-

each one of us

small spheres of loneliness.

 

We’re locked

-in our minds

-in our pain

-in our patient IDs

 

What do you do

when the treatment

feels worse

than the illness?

 

Stripped of everything

familiar,

except that constant-

depression.

 

II. Foggy

Should I ask for the nail clippers?

Small signs of time passing-

longer nails, body hair,

and that monthly reminder of womanhood.

 

Everything else blurs together-

groups, meals, and the patients

who come and go

before I can come back to myself.

 

Twice a day, the question

“are you thinking about wanting to be dead?”

Each time I reply,

I’m less sure of my answer.

 

III. Scrutinized

The nurses walk by every 15 minutes

and flip through their clipboards,

monitoring their charges

with small, inked notes.

 

Some of us deal with it

alone,

cocooning ourselves

inside our skulls.

 

Others direct it outward,

venting to anyone who will listen

in an attempt

to regain control.

 

Ever present: the choice to perform-

or be authentic.

Which will get me out

and which will get me better?

 

IV. Treatment

They say it’s not a punishment, being here-

and it’s not-

but my sputtering brain,

fighting to maintain pathology,

 

begs

to differ.

 

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11 Days Hospitalized for Depression

I spent a week and a half hospitalized for depression as an inpatient at a behavioral health hospital, and all I got was a lot of decaf, terrible antiperspirant, and ungroomed eyebrows (dangerously close to being “eyebrow”). Oh, and a will to live.

When I ran out of methylfolate, my mutant brain began to rebel. All of the work I had done to pull myself out of the dark pit of depression flew out the window as my symptoms came roaring back. I was tired of living with the darkness, the fatigue, the brain fog, and the sadness of depression. And, because it seemed that there was no other way to live, I was tired of living. I fell into the old habits of isolating, harming myself, and outwardly presenting as if everything were fine.

When you stuff everything down, at some point you run out of space. My tipping point came during my weekly therapy session. After describing the hopelessness and elaborating on the details of my thoughts about suicide, my therapist convinced me to go to the hospital. Once I had been assessed, I was given the choice (that wasn’t really a choice) to either sign myself in voluntarily or be put on a 72-hour hold. I signed myself in.

The unit I was on is designed to be a crisis stabilization unit. There’s no one-on-one therapy, visiting hours are actually a singular visiting hour each day, and the items you’re allowed to have are extremely limited. Patients are expected to be in group therapy, meeting with a doctor or social worker, or working on an alternate activity like journaling. You are locked out of your bedroom for most of the day, so your options for privacy are slim to none. You and your roommate must sleep with the door open, as nurses walk around all night long doing “checks,” where they mark down your whereabouts and what you’re doing on their clipboard paperwork. Not to mention your bed is hard and noisy, and your pillow feels like a sack of uncooked rice. It was a difficult environment to be in for 11 days, to say the least.

Being hospitalized for depression is not easy, but the good news is, it works. I switched medications, and while it’s too soon to say whether it’s a good fit for me, being kept in a safe place surrounded by people who understood what I was going through went a long way towards getting me back on my feet. The groups tended to cover topics that were familiar to me, so not much of the information was new. That being said, hearing other patients’ perspectives and experiences was what made my stay helpful.

I stayed for several days longer than the average at that hospital. The staff wanted to see more improvement than I was making, and I wanted to avoid triggering a 72-hour hold by declaring that I was checking out against medical advice. This resulted in my estimated discharge date being pushed out a day or two at a time while my frustration levels grew. Eventually, I agreed to do a partial hospitalization program at a different facility near where I live. This was enough to convince the staff that I was safe to go home. Today, I start the process of doing a PHP. I feel much better than I did when I was admitted to the hospital. I know that shifting back into my normal routines will be a tricky transition and that a week and a half in a hospital doesn’t fix everything. But, it’s a start.

And now, the real work begins.