u/Visual_Counter_4897

After 2 weeks of FIGHTING the system and being told every step of the way I was crazy, enduring a completely unnecessary psychiatric unit stay for these issues, and being told "it's anxiety" every damn day, I'm finally figuring out what's going on.

I'm in one of the best academic hospitals in the country, and just
got results from a CTV scan today and it confirmed the following:

-Moderate narrowing of the distal aspect of the nondominant left transverse sinus..

-Transverse and sigmoid sinuses: Nondominant left transverse sinus, with moderate distal narrowing immediately distal to the confluence with vein of Labbe..

My lumbar puncture opening pressure was 27

So I'm coming to terms with the fact that I was never crazy....I was told these issues were in my head when in fact the symptoms and issues were LITERALLY IN MY HEAD....

The relief I feel is indescribable but I'm incredibly frustrated that I got kicked to the curb, dismissed and gaslit each step of the way.

After 2 weeks of FIGHTING the system and being told every step of the way I was crazy, enduring a completely unnecessary psychiatric unit stay for these issues, and being told "it's anxiety" every damn day, I'm finally figuring out what's going on.

I'm in one of the best academic hospitals in the country, and just I

got results from a CTV scan today and it confirmed the following:

-Moderate narrowing of the distal aspect of the nondominant left transverse sinus..

-Transverse and sigmoid sinuses: Nondominant left transverse sinus, with moderate distal narrowing immediately distal to the confluence with vein of Labbe..

So I'm coming to terms with the fact that I was never crazy....I was told these issues were in my head when in fact the symptoms and issues were LITERALLY IN MY HEAD....

The relief I feel is indescribable but I'm incredibly frustrated that I got kicked to the curb, dismissed and gaslit each step of the way.

After 2 weeks of FIGHTING the system and being told every step of the way I was crazy, enduring a completely unnecessary psychiatric unit stay for these issues, and being told "it's anxiety" every damn day, I'm finally figuring out what's going on.

I'm in one of the best academic hospitals in the country, and just I

got results from a CTV scan today and it confirmed the following:

-Moderate narrowing of the distal aspect of the nondominant left transverse sinus..

-Transverse and sigmoid sinuses: Nondominant left transverse sinus, with moderate distal narrowing immediately distal to the confluence with vein of Labbe..

So I'm coming to terms with the fact that I was never crazy....I was told these issues were in my head when in fact the symptoms and issues were LITERALLY IN MY HEAD....

The relief I feel is indescribable but I'm incredibly frustrated that I got kicked to the curb, dismissed and gaslit each step of the way.

Now to deal with this head on!

Sorry for another post, but I am having an absolute miserable time and can't seem to get appropriate care no matter where I try and seek it.

In a nutshell, I have POTS, Lupus and CVID with a history of recurrent viral meningitis (typically associated with receiving 3 years of IVIG) though infusions were discontinued months ago due to the severity of my side effects.

I am a very complex patient and while I have a history of anxiety, I also have had diagnosed meningitis, sepsis, and blood clots just to name a few.

Essentially, 2 weeks ago, I developed my typical triad of symptoms...headache, stiff neck and low grade fever.

To sum up a really crazy two weeks, I have now experienced severe neurological symptoms due to these initial symptoms, a new diagnose of ptosis, and a new diagnosis of Adie Syndrome. Additionally, I had been given two medications during a recent hospitalization which increase risk for seizures was misinformed as how to take my welbutrin...my dose was increased to 300 mg once a day, but I was so medicated at that point that I swear I thought the dose was 300 mg twice a day...which I took for 4 consecutive days.

In a nutshell, prior to and after this incident, I've been having the following additional symptoms:

-left eyelid droop, larger pupil on the right side

-blurry vision that comes and goes

-chills

-severe neck pain and persistent headache which is predominantly on the left side but is spreading.

-medication induced psychosis due to unintentional overdose and a severe case of hypomania due to a history of Bipolar

-trouble walking at times

-pretty persistent ringing in my ears

-cramping in both calves

-significant fatigue to the point where my head feels heavy and I get no relief even after sleeping for 10+ hours each night. I wake up feeling like I could sleep another 10..it's been like this since the symptoms began 2 weeks ago.

I have been seen in a few ERs where a head CT and basic bloodwork was done, which was unrevealing. However, I also saw Opthamology, Neuroopthamology and Neurology in addition to Rheumatology today, and the general concensus is that due to history, this coul be a CNS form of Lupus or a brain infection like meningitis but they're trying to deal with this outpatient...I have MRIs and MRAs scheduled and a possible lumbar puncture in the future. My question remains...if this is an infection (and my body truly feels infected)

Unfortunately, I have also been told during certain visits, without testing that these symptoms stem from anxiety, so basically I have to question every day whether or not I am sick enough to go back to the hosptial.

At this point my pain is increasing, I still have a good number of the neurological symptoms and my temperature is inching towards 100.

At what point am I sick enough to be able to go to the larger academic hospital an hour away in good conscious or am I really safe to wait until Monday for 1 scan, another week for the other and then longer for the lumbar puncture?

I'm just tired of this and being told that anxiety is the most likely cause of this constellation of symptoms which have never happened to me before.

32F, USA, Caucasian, history of POTS, Lupus, CVID, on meds for each.

I’m terrified and just need to know if I’m in danger sitting at home right now

Very vulnerable post—asking for support

This is what I dealt with today
(The message I sent to my team)

I’m now essentially a ticking time bomb waiting and hoping for nothing catastrophic to happen.

I have systemic lupus erythematosus and over the past two weeks I’ve developed a significant change in my neurological and physical symptoms. I’ve been experiencing intermittent confusion, difficulty concentrating, memory problems, dizziness, balance issues, urine leakage, a dry mouth, al tremors, generalized weakness, unequal pupils that were evaluated by ophthalmology (with concern and new diagnosis of a tonic pupil/Adie syndrome and neurology follow-up), intermittent eyelid drooping confirmed as ptosis by ophthalmology , and a 10/10 headache and neck pain/stiffness worse on the left, and potentially psychotic episodes driven where I don’t feel like myself and may be driven potentially driven by medication induced psychosis (I have diagnosed Bipolar 1 so my psychiatric team feels this is is a genuine concern from my psychiatric team)

In addition, I’ve had recurrent itchy rashes (right breast area that showed up today), an itchy throat with coughing, excessive sweating, am unable to eat without having trouble swallowing, as well as new tremors and chills among other systemic symptoms.

My medication regimen was recently changed substantially during a recent hospitalization (was given medications with known interactions-(plaquenil and vistaril) despite my knowledge, and my Wellbutrin was increased from 150 mg to 600 mg very suddenly), and my team is concerned these changes could be contributing to my symptoms.

At the same time, given my history of lupus, my team is also concerned about a possible neurological or autoimmune cause as I just had a skin biopsy confirm new progression of my diagnosed Lupus, with new skin involvement (I can provide the pathology results if needed) and possible Rowell Syndrome.

I have a history of recurrent viral meningitis confirmed by spinal taps and imaging so some of these physical symptoms present are not new to me, but there are many that are things I’ve never experienced before in my life.
I spoke with my therapist before coming in, and they recommended that the Emergency Department was the most appropriate place to be evaluated because it is currently unclear whether my symptoms are being driven by a medical condition, a psychiatric condition, or a combination of both. My symptoms have been progressively worsening and are significantly affecting my ability to function. I’m here because my team would appreciate a thorough evaluation to determine the underlying cause and ensure I receive the appropriate treatment. I am having trouble speaking, have a significant headache on the left side, and feel tingling in my face on both sides, can’t walk in a straight line reliably and am also experiencing persistent tingling in my face (both sides) and down my legs.

This has gotten progressively worse by the day and I am now having ringing in both ears accompanied some drainage from both ears as well as intense and frightening auditory, visual and sensory hallucinations which I’ve never experienced before.

I’m scared. This is the scariest thing I’ve ever dealt with medically/psychiatrically

Please help me through this.

I’ve been told I’ve been stabilized but physically cannot stand and am struggling to swallow even saliva. I have been told I’m stable for discharge which doesn’t make logical sense. I’m scared, neurologically impaired from multiple outside factors (lupus CNS and also the alarming amount of meds I accidently ingested). They gave me 25 mg of IV Benadryl, and 5 mg of IV Valium and 1 bag of normal saline with no improvement and potentially worsening symptoms as a result.

Please help me

What I accidently ingested thinking I was taking the right doses

Intended: 300 mg of Wilbutrin 1x day

Took 300 mg twice a day for 4 days

Also had been given a mixture of plaquenil (for my lupus) and vistaril during a recent psychiatric admission (which I’ve found out by a CVS pharmacist is a dangerous combination)

I can’t manage this at home and the treatment I was given in the hospital has increased my symptoms to the point where dysfunctional.

Very vulnerable post—asking for support

As if my luck can’t get worse….i need to share this for awareness of neglect that exists within the healthcare system

This is what I dealt with today
(The message I sent to my team)

I’m now essentially a ticking time bomb waiting and hoping for nothing catastrophic to happen.

I have systemic lupus erythematosus and over the past two weeks I’ve developed a significant change in my neurological and physical symptoms. I’ve been experiencing intermittent confusion, difficulty concentrating, memory problems, dizziness, balance issues, urine leakage, a dry mouth, al tremors, generalized weakness, unequal pupils that were evaluated by ophthalmology (with concern and new diagnosis of a tonic pupil/Adie syndrome and neurology follow-up), intermittent eyelid drooping confirmed as ptosis by ophthalmology , and a 10/10 headache and neck pain/stiffness worse on the left, and potentially psychotic episodes driven where I don’t feel like myself and may be driven potentially driven by medication induced psychosis (I have diagnosed Bipolar 1 so my psychiatric team feels this is is a genuine concern from my psychiatric team)

In addition, I’ve had recurrent itchy rashes (right breast area that showed up today), an itchy throat with coughing, excessive sweating, am unable to eat without having trouble swallowing, as well as new tremors and chills among other systemic symptoms.

My medication regimen was recently changed substantially during a recent hospitalization (was given medications with known interactions-(plaquenil and vistaril) despite my knowledge, and my Wellbutrin was increased from 150 mg to 600 mg very suddenly), and my team is concerned these changes could be contributing to my symptoms.

At the same time, given my history of lupus, my team is also concerned about a possible neurological or autoimmune cause as I just had a skin biopsy confirm new progression of my diagnosed Lupus, with new skin involvement (I can provide the pathology results if needed) and possible Rowell Syndrome.

I have a history of recurrent viral meningitis confirmed by spinal taps and imaging so some of these physical symptoms present are not new to me, but there are many that are things I’ve never experienced before in my life.
I spoke with my therapist before coming in, and they recommended that the Emergency Department was the most appropriate place to be evaluated because it is currently unclear whether my symptoms are being driven by a medical condition, a psychiatric condition, or a combination of both. My symptoms have been progressively worsening and are significantly affecting my ability to function. I’m here because my team would appreciate a thorough evaluation to determine the underlying cause and ensure I receive the appropriate treatment. I am having trouble speaking, have a significant headache on the left side, and feel tingling in my face on both sides, can’t walk in a straight line reliably and am also experiencing persistent tingling in my face (both sides) and down my legs.

This has gotten progressively worse by the day and I am now having ringing in both ears accompanied some drainage from both ears as well as intense and frightening auditory, visual and sensory hallucinations which I’ve never experienced before.

I’m scared. This is the scariest thing I’ve ever dealt with medically/psychiatrically

Please help me through this.

I’ve been told I’ve been stabilized but physically cannot stand and am struggling to swallow even saliva. I have been told I’m stable for discharge which doesn’t make logical sense. I’m scared, neurologically impaired from multiple outside factors (lupus CNS and also the alarming amount of meds I accidently ingested). They gave me 25 mg of IV Benadryl, and 5 mg of IV Valium and 1 bag of normal saline with no improvement and potentially worsening symptoms as a result.

Please help me

What I accidently ingested thinking I was taking the right doses

Intended: 300 mg of Wilbutrin 1x day

Took 300 mg twice a day for 4 days

Also had been given a mixture of plaquenil (for my lupus) and vistaril during a recent psychiatric admission (which I’ve found out by a CVS pharmacist is a dangerous combination)

I can’t manage this at home and the treatment I was given in the hospital has increased my symptoms to the point where dysfunctional.

Please help, as I don't know what to do. I'm posting to see if anyone else has experienced this or can help me while I wait for further guidance from members of my team.

I need to explain what I am experiencing as I do not know which parts of this are physical and if there is a psychiatric component that needs to be addressed.

Over the past several weeks, I have experienced a significant change from my baseline, and I am becoming increasingly concerned that my symptoms continue to progress rather than improve. I understand there may be several possible explanations, and I am not trying to self-diagnose. My goal is to communicate how much has changed and ask for guidance regarding the appropriate evaluation.

My recent skin biopsy showed positive direct immunofluorescence with fibrinogen, IgM, C3, C5b-9, and abundant cytoid bodies. The pathology report recommended clinical, histologic, and serologic correlation. I also carry diagnoses of Lupus, CVID, and POTS.

I’ve been to the ER, had a negative CT scan of my brain and abdomen, but the symptoms are persisting and worsening each day. 

Since then, I have developed a number of new neurological psychiatric and systemic symptoms, including:

• Confirmed Adie syndrome today by Neuroopthamology (diagnosed by neuro-ophthalmology with pharmacologic testing) and intermittent left eye droop (confirmed by opthamology) -trouble getting words out/mildly slurred speech at times -a constant state of anxiety and panic attacks that require valium to get under control
• Reduced tendon reflexes (confirmed by neuroopthamology)
• Persistent headaches and neck pain/stiffness on the left side only 
• Bilateral ringing in both ears that is often worse at night.
• Markedly impaired concentration and unsteadiness on my feet. 
• Sleeping 12–14 hours per night while still waking feeling as though I have not slept in days.
• Difficulty eating because eating makes me feel significantly worse.
• Intermittent urinary leakage (small drops without warning).
• Intermittent sensations of something brushing against my face when I know nothing is there.
• Intermittent soft whispering that I perceive as real in the moment, although I recognize that it is not actually occurring and remain fully oriented and grounded in reality.
• A recent mood change that began with unusual irritability and has progressed into depression. Because this depression was new for me, I recently started Wellbutrin under medical supervision.

What concerns me most is not any one symptom, but the overall progression. These symptoms are not my normal baseline and have accumulated over a relatively short period (2 weeks) . My ability to function has declined significantly, and I no longer feel comfortable managing this at home without further evaluation but am worried to go to the hospital for fear of being admitted again psychiatrically but also it’s progressing by the day.

This is genuinely scaring me (mainly the rapid progression of symptoms) 

I don’t know what’s going on and I have no idea if this is driven by Lupus, an infection, driven by a psychiatric condition or something different, entirely. 

Any thoughts are appreciated. 

I see Neurology tomorrow but do not know what to do as I am afraid to sleep as the symptoms get increasingly worse at night. 

However I am afraid to go back to the ER and be immediately sent to psychiatry, as I had an admission last week in which none of my physical or mental health issues were properly addressed.

I reached out to doctors, have seen many in person, and got an urgent appt with my psychiatric team today but I'm freaked out by all of this.

Please help, as I don't know what to do. I'm posting to see if anyone else has experienced this or can help me while I wait for further guidance from members of my team.

I need to explain what I am experiencing as I do not know which parts of this are physical and if there is a psychiatric component that needs to be addressed.

Over the past several weeks, I have experienced a significant change from my baseline, and I am becoming increasingly concerned that my symptoms continue to progress rather than improve. I understand there may be several possible explanations, and I am not trying to self-diagnose. My goal is to communicate how much has changed and ask for guidance regarding the appropriate evaluation.

My recent skin biopsy showed positive direct immunofluorescence with fibrinogen, IgM, C3, C5b-9, and abundant cytoid bodies. The pathology report recommended clinical, histologic, and serologic correlation. I also carry diagnoses of Lupus, CVID, and POTS.

I’ve been to the ER, had a negative CT scan of my brain and abdomen, but the symptoms are persisting and worsening each day. 

Since then, I have developed a number of new neurological psychiatric and systemic symptoms, including:

• Confirmed Adie syndrome today by Neuroopthamology (diagnosed by neuro-ophthalmology with pharmacologic testing) and intermittent left eye droop (confirmed by opthamology) -trouble getting words out/mildly slurred speech at times -a constant state of anxiety and panic attacks that require valium to get under control
• Reduced tendon reflexes (confirmed by neuroopthamology)
• Persistent headaches and neck pain/stiffness on the left side only 
• Bilateral ringing in both ears that is often worse at night.
• Markedly impaired concentration and unsteadiness on my feet. 
• Sleeping 12–14 hours per night while still waking feeling as though I have not slept in days.
• Difficulty eating because eating makes me feel significantly worse.
• Intermittent urinary leakage (small drops without warning).
• Intermittent sensations of something brushing against my face when I know nothing is there.
• Intermittent soft whispering that I perceive as real in the moment, although I recognize that it is not actually occurring and remain fully oriented and grounded in reality.
• A recent mood change that began with unusual irritability and has progressed into depression. Because this depression was new for me, I recently started Wellbutrin under medical supervision.

What concerns me most is not any one symptom, but the overall progression. These symptoms are not my normal baseline and have accumulated over a relatively short period (2 weeks) . My ability to function has declined significantly, and I no longer feel comfortable managing this at home without further evaluation but am worried to go to the hospital for fear of being admitted again psychiatrically but also it’s progressing by the day. 

I

This is genuinely scaring me (mainly the rapid progression of symptoms) 

I don’t know what’s going on and I have no idea if this is driven by Lupus, an infection, driven by a psychiatric condition or something different, entirely. 

Any thoughts are appreciated. 

I see Neurology tomorrow but do not know what to do as I am afraid to sleep as the symptoms get increasingly worse at night. 

However I am afraid to go back to the ER and be immediately sent to psychiatry, as I had an admission last week in which none of my physical or mental health issues were properly addressed.

I reached out to doctors, have seen many in person, and got an urgent appt with my psychiatric team today but I'm freaked out by all of this.

Please help, as I don't know what to do.

I need to explain what I am experiencing as I do not know which parts of this are physical and if there is a psychiatric component that needs to be addressed.

Over the past several weeks, I have experienced a significant change from my baseline, and I am becoming increasingly concerned that my symptoms continue to progress rather than improve. I understand there may be several possible explanations, and I am not trying to self-diagnose. My goal is to communicate how much has changed and ask for guidance regarding the appropriate evaluation.

My recent skin biopsy showed positive direct immunofluorescence with fibrinogen, IgM, C3, C5b-9, and abundant cytoid bodies. The pathology report recommended clinical, histologic, and serologic correlation. As you know, I also carry diagnoses of Lupus, CVID, and POTS.

I’ve been to the ER, had a negative CT scan of my brain and abdomen, but the symptoms are persisting and worsening each day. 

Since then, I have developed a number of new neurological psychiatric and systemic symptoms, including:

• Confirmed Adie syndrome today by Neuroopthamology (diagnosed by neuro-ophthalmology with pharmacologic testing) and intermittent left eye droop (confirmed by opthamology)  -trouble getting words out/mildly slurred speech at times -a constant state of anxiety and panic attacks that require valium to get under control
• Reduced tendon reflexes (confirmed by neuroopthamology)
• Persistent headaches and neck pain/stiffness on the left side only 
• Bilateral ringing in both ears that is often worse at night.
• Markedly impaired concentration and unsteadiness on my feet. 
• Sleeping 12–14 hours per night while still waking feeling as though I have not slept in days.
• Difficulty eating because eating makes me feel significantly worse.
• Intermittent urinary leakage (small drops without warning).
• Intermittent sensations of something brushing against my face when I know nothing is there.
• Intermittent soft whispering that I perceive as real in the moment, although I recognize that it is not actually occurring and remain fully oriented and grounded in reality.
• A recent mood change that began with unusual irritability and has progressed into depression. Because this depression was new for me, I recently started Wellbutrin under medical supervision.

What concerns me most is not any one symptom, but the overall progression. These symptoms are not my normal baseline and have accumulated over a relatively short period (2 weeks) . My ability to function has declined significantly, and I no longer feel comfortable managing this at home without further evaluation but am worried to go to the hospital for fear of being admitted again psychiatrically but also it’s progressing by the day. 

I understand there are many possible explanations, including neurological, autoimmune, infectious, medication-related, or psychiatric causes, and I am open to whatever evaluation is medically appropriate. My primary concern is that the entire clinical picture be considered together rather than each symptom in isolation.

Thank you for taking the time to review this. I greatly appreciate your help in determining the appropriate next steps. This is genuinely scaring me (mainly the rapid progression of symptoms) 

I don’t know what’s going on and I have no idea if this is driven by Lupus, an infection, driven by a psychiatric condition  or something different, entirely. 

Any thoughts are appreciated. 

I see Neurology tomorrow but do not know what to do as I am afraid to sleep as the symptoms get increasingly worse at night. 

However I am afraid to go back to the ER and be immediately sent to psychiatry, as I had an admission last week in which none of my physical or mental health issues were properly addressed.

I know you'll understand behind the relief behind this statement---I had a wrist rash biopsy to try and explain at least SOME of what's going on with me medically, and I GOT A POSITIVE/ABNORMAL RESULT. It is validating because despite my 3 medical diagnoses, I am told more often than not that my issues stem from anxiety....lmao.

I'm sharing since I'm happy this is a way forward...I hear from my doctor tomorrow and am getting my team involved becuase this could be directly related to the Lupus I have been diagnosed with or something else entirely.

THIS IS GOOD NEWS---it's a way forward, which is all I've been asking for for a DECADE.

Opening my journal to the public for the first time because I have one hell of a story to tell. This was written the other night after a really difficult experience that tired to break me but I persevered and pulled through.

I’m sharing as this is a piece of writing that truly was therapeutic and incredibly difficult to write, but may be one of the most impactful piece I’ve produced. It’s incorporated into my Autobiography but I compelled to share. It would mean a lot if you’d read it.

Warning: TW mentions of medical trauma and abuse (but not detailed or graphic in any way)

6/25/2026

How many times do I need to say this?

ENOUGH. ENOUGH. ENOUGH!

G-d, please. Help me.

I've whispered it, screamed it, and during a different hospitalization, I even became psychotic partially due to incorrect doses of medication but also because of everything I'd been carrying. What more can I do? Tell me, because I'll do it. I just can't do it alone.

I can't keep being the patient, advocate, coordinator, case manager, and everything in between. It isn't fair to carry all of that responsibility only to be told I'm "not doing enough" to improve my situation. It's bullshit.

I don't want to be treated like a problem. I want to be treated like a person.

So, to the universe—you don't control the narrative.

I do.

I am worthy of dignity.

I am worthy of care.

I am worthy of being heard.

As I sit here with nothing but my journal and a book for comfort, I find myself wondering how this is considered "care" rather than neglect.

Physically, mentally, and emotionally, I'm exhausted.

I've been cooperative, respectful, and patient, yet my physical symptoms continue to be dismissed as anxiety. I came to the hospital asking for help with both my mental and physical health, yet a week later my persistent abdominal pain and profound exhaustion remain largely unaddressed.

Watching another patient receive a Gastroenterology consult the same day she mentioned GI symptoms, after I'd been told by a Hospitalist that there were "no gastroenterologists in the hospital," was difficult to ignore.

So, I've stopped talking about my pain.

If every symptom is assumed to be anxiety, why bother?

The hardest realization isn't that I don't have a medical team.

It's that I have one extraordinary physician and a fabulous psychiatry team who consistently fight for me, but everyone else feels like they're simply passing me along.

I've been direct. Thoughtful. Calm. Yet one psychiatrist documented that I "lack insight."

Ironically, insight is exactly what I have.

I know what's happening.

I know this isn't sustainable.

I know I need more help than I can provide for myself.

That's why I've accepted that residential treatment first, and eventually a more intensive inpatient program at a hospital and hour away, is my next step—not because I want out of life, but because I want a better way through it.

There's an enormous difference.

I've repeatedly asked doctors, therapists, psychiatrists, and friends for help before reaching a crisis point. Instead, I've slowly been conditioned to believe that asking isn't worth it because my voice somehow carries less weight than everyone else's.

I know that isn't reality.

But it's certainly how this system has made me feel.

I've been asking for simple things.

Not miracles.

Conversation.

Compassion.

Care.

Someone to sit with me while I'm overwhelmed instead of asking four checklist questions before disappearing.

Every interaction has felt like this:

"Are you suicidal?"

"No."

"Rate your mood."

Then silence.

One evening, after becoming dizzy from my POTS, I pressed the nurse call button because staff had instructed us to use it if we needed help.

Instead, a secretary stormed into my room, pointed a finger at me, and shouted,

"YOU DON’T PRESS THAT. WHO TOLD YOU TO TOUCH THAT?"

I laughed because crying felt worse.

But also we were explicitly told upon arrival to the unit that we SHOULD press that button if we needed a nurse.

What a lovely interaction with a woman who clearly had the same level of compassion as a carrot.

Moments later a nurse tossed me a Valium without making eye contact and walked away.

That interaction has stayed with me because it perfectly captures how invisible I've felt.

Writing became the only thing nobody could take from me.

When my journal was temporarily confiscated, I calmly explained that it wasn't just paper.

It was survival.

Fortunately, they gave it back.

This notebook became the conversation nobody else was willing to have.

I've spent years trying to understand suffering, and lately I've realized something important.

Maybe suffering isn't meant to make sense.

Maybe what matters is what we choose to do with it.

I can let it define me.

Or I can transform it into purpose.

That's why I'm writing this book.

Not because I want sympathy.

Because I want to elicit change.

I want the next patient with both physical illness and psychiatric diagnoses who walks through any doctor’s door, to be treated with curiosity instead of suspicion.

I want someone else to feel seen because they recognized themselves in these pages.

I want my story to become proof that a person's psychiatric history should inform care—not replace it.

I'm angry.

I'm hurt.

I'm exhausted.

But I refuse to let suffering write the ending.

I hold the pen.

This story ends with hope.

It ends with healing.

It ends with someone finally saying, "Enough."

Until then, I'll keep saying it myself.

Dayenu (the Hebrew word for Enough)

Opening my journal to the public for the first time because I have one hell of a story to tell. This was written the other night after a really difficult experience that tired to break me but I persevered and pulled through.

I’m sharing as this is a piece of writing that truly was therapeutic and incredibly difficult to write, but may be one of the most impactful piece I’ve produced. It’s incorporated into my Autobiography but I compelled to share. It would mean a lot if you’d read it.

Warning: TW mentions of medical trauma and abuse (but not detailed or graphic in any way)

6/25/2026

How many times do I need to say this?

ENOUGH. ENOUGH. ENOUGH!

G-d, please. Help me.

I've whispered it, screamed it, and during a different hospitalization, I even became psychotic partially due to incorrect doses of medication but also because of everything I'd been carrying. What more can I do? Tell me, because I'll do it. I just can't do it alone.

I can't keep being the patient, advocate, coordinator, case manager, and everything in between. It isn't fair to carry all of that responsibility only to be told I'm "not doing enough" to improve my situation. It's bullshit.

I don't want to be treated like a problem. I want to be treated like a person.

So, to the universe—you don't control the narrative.

I do.

I am worthy of dignity.

I am worthy of care.

I am worthy of being heard.

As I sit here with nothing but my journal and a book for comfort, I find myself wondering how this is considered "care" rather than neglect.

Physically, mentally, and emotionally, I'm exhausted.

I've been cooperative, respectful, and patient, yet my physical symptoms continue to be dismissed as anxiety. I came to the hospital asking for help with both my mental and physical health, yet a week later my persistent abdominal pain and profound exhaustion remain largely unaddressed.

Watching another patient receive a Gastroenterology consult the same day she mentioned GI symptoms, after I'd been told by a Hospitalist that there were "no gastroenterologists in the hospital," was difficult to ignore.

So, I've stopped talking about my pain.

If every symptom is assumed to be anxiety, why bother?

The hardest realization isn't that I don't have a medical team.

It's that I have one extraordinary physician and a fabulous psychiatry team who consistently fight for me, but everyone else feels like they're simply passing me along.

I've been direct. Thoughtful. Calm. Yet one psychiatrist documented that I "lack insight."

Ironically, insight is exactly what I have.

I know what's happening.

I know this isn't sustainable.

I know I need more help than I can provide for myself.

That's why I've accepted that residential treatment first, and eventually a more intensive inpatient program at a hospital and hour away, is my next step—not because I want out of life, but because I want a better way through it.

There's an enormous difference.

I've repeatedly asked doctors, therapists, psychiatrists, and friends for help before reaching a crisis point. Instead, I've slowly been conditioned to believe that asking isn't worth it because my voice somehow carries less weight than everyone else's.

I know that isn't reality.

But it's certainly how this system has made me feel.

I've been asking for simple things.

Not miracles.

Conversation.

Compassion.

Care.

Someone to sit with me while I'm overwhelmed instead of asking four checklist questions before disappearing.

Every interaction has felt like this:

"Are you suicidal?"

"No."

"Rate your mood."

Then silence.

One evening, after becoming dizzy from my POTS, I pressed the nurse call button because staff had instructed us to use it if we needed help.

Instead, a secretary stormed into my room, pointed a finger at me, and shouted,

"YOU DON’T PRESS THAT. WHO TOLD YOU TO TOUCH THAT?"

I laughed because crying felt worse.

But also we were explicitly told upon arrival to the unit that we SHOULD press that button if we needed a nurse.

What a lovely interaction with a woman who clearly had the same level of compassion as a carrot.

Moments later a nurse tossed me a Valium without making eye contact and walked away.

That interaction has stayed with me because it perfectly captures how invisible I've felt.

Writing became the only thing nobody could take from me.

When my journal was temporarily confiscated, I calmly explained that it wasn't just paper.

It was survival.

Fortunately, they gave it back.

This notebook became the conversation nobody else was willing to have.

I've spent years trying to understand suffering, and lately I've realized something important.

Maybe suffering isn't meant to make sense.

Maybe what matters is what we choose to do with it.

I can let it define me.

Or I can transform it into purpose.

That's why I'm writing this book.

Not because I want sympathy.

Because I want to elicit change.

I want the next patient with both physical illness and psychiatric diagnoses who walks through any doctor’s door, to be treated with curiosity instead of suspicion.

I want someone else to feel seen because they recognized themselves in these pages.

I want my story to become proof that a person's psychiatric history should inform care—not replace it.

I'm angry.

I'm hurt.

I'm exhausted.

But I refuse to let suffering write the ending.

I hold the pen.

This story ends with hope.

It ends with healing.

It ends with someone finally saying, "Enough."

Until then, I'll keep saying it myself.

Dayenu (the Hebrew word for Enough)

TW: mentions of abuse (not graphic or detailed)

So I’m appalled. I was in the ER a week ago for PHYSICAL symptoms (see image of my visibly drooping eye) and was admitted to the psychiatric floor for anxiety instead. While there, I met some amazing patients but the care was abysmal to the point where my dear new friend who has medical issues and other mental health diagnoses was literally dragged from the break room in front of a room of people, to her room by her arm and was told to sit down, shut up and go to bed.

This horror of a nurse then abused me mentally but since has been fired (thank god)

I’m posting here because I asked for 6 days for medical help for this issue and another medical complaint and was blatantly ignored and told that any time I was experiencing a symptom it was due to anxiety.

Anyway, I came home yesterday and my blurry vision in my left eye got worse, the droop is more visible and I have a headache, stiff and painful neck on the left side, profound fatigue and now ringing on and off in my ears.

Clearly anxiety, right?

Well I didn’t take that as reality so I called my neuroopthamologist in Baltimore and had an appt scheduled for Monday but they were kind and gracious enough to offer me an emergency appt at 2 today.

Why is seeking healthcare so challenging? This could have been addressed days ago but instead I was told my visible and worsening symptoms were in my head.

What a joke

I did something incredibly brave...I messaged my biological sister for the first time. I've wanted to connect with my family for a long time and finally got up the courage to reach out. Now the ball is in her court <3 Here's to hoping she responds and praying she can connect me to my biological mom

F32, USA, Caucasian, on meds for POTS, Lupus, CVID, complex medical history. No drug or alcohol use.

I was ambulanced to the hospital yesterday from an urgent opthamology appt with new eye drooping, blurry vision, unequal pupils and random bladder incontinence. This has gone on for 2 days, and I’ve been urgently referred to Neuroopthamology but am reaching out in the meantime to see if anyone here has thoughts on this? The only new thing I’ve introduced in my life is a new medication-Wellbutrin. Could this be causing these issues? I had a head and neck CT which was unrevealing though the symptoms are persisting and it’s affecting my ability to function at this point. Just reaching out to see if anyone has any thoughts on this!

https://preview.redd.it/nqf5m3hgr18h1.jpg?width=2316&format=pjpg&auto=webp&s=277667648c34de381211f2275e9c256e1af5a7ba

It took a 20 hour ER wait, a medical evaluation and a psychiatric ER visit to determine my conditions are taking over my life. The next step is an inpatient medical/pain management/treatment program with Hopkins! I view this is a blessing because I literally cannot live like this anymore. I am so hopeful and filled with joy at the prospect of being able to properly address my medical issues at a revered institution. Here's to bigger and better things!

TW: Blood

I literally feel like I am losing my mind. Okay not literally, but I'm a chronic illness patient of 10 years with more doctor's visits, ER trips and medical emergencies than I can count. I have POTS, Lupus and CVID and am immunosuppressed due to being on Plaquenil and becuase of my immunodeficiency.

I'm currently having symptoms that are atypical for me and I'm concerned because the message I keep being told is that my active vaginal bleeding (not period related and have never been sexually active) are anxiety.

I went to the ER last night and spent 10 hours waiting while every other patient was seen (I saw the doctor go into every single room before seeing me. I understand acuity but it felt rather personal.) He finally got to me and said "your labs are normal" despite having a markedly abnormal urinalysis, significant pain and so I looked at him and said I wasn't leaving without some form of imaging. He said "what kind of pathology do you think we're going to find. Likely nothing".

I'm just wondering if this amount of bleeding is normal..I mean I know the answer, but I've been made to feel absolutely insane trying to get to the bottom of this. It's like a period, but I had it 2 weeks ago. The pain is mainly on the lower left side but the abdominal ultrasound was normal.

I'm clearly bleeding from somewhere, so why am I constantly dismissed and told this is in my head when I have objective findings and visible blood in the toilet and when I wipe.

Please help me. I have an appointment with my urogynecologist on Monday but will likely be told to go back to the hospital if it's persisting or worsening. I just don't know how to seek care as chronic illness patient who also has acute problems, anymore.

Help me.

I literally feel like I am losing my mind. Okay not literally, but I'm a chronic illness patient of 10 years with more doctor's visits, ER trips and medical emergencies than I can count. I have POTS, Lupus and CVID and am immunosuppressed due to being on Plaquenil and becuase of my immunodeficiency.

I'm currently having symptoms that are atypical for me and I'm concerned because the message I keep being told is that my active vaginal bleeding (not period related and have never been sexually active) are anxiety.

I went to the ER last night and spent 10 hours waiting while every other patient was seen (I saw the doctor go into every single room before seeing me. I understand acuity but it felt rather personal.) He finally got to me and said "your labs are normal" despite having a markedly abnormal urinalysis, significant pain and so I looked at him and said I wasn't leaving without some form of imaging. He said "what kind of pathology do you think we're going to find. Likely nothing".

I'm just wondering if this amount of bleeding is normal..I mean I know the answer, but I've been made to feel absolutely insane trying to get to the bottom of this. It's like a period, but I had it 2 weeks ago. The pain is mainly on the lower left side but the abdominal ultrasound was normal.

I'm clearly bleeding from somewhere, so why am I constantly dismissed and told this is in my head when I have objective findings and visible blood in the toilet and when I wipe.

Please help me. I have an appointment with my urogynecologist on Monday but will likely be told to go back to the hospital if it's persisting or worsening. I just don't know how to seek care as chronic illness patient who also has acute problems, anymore.

Help me.