Content Note: This entire post is a content note. If you are a human being, it will trigger you. Read at your own risk.
Some of you are wondering “Why is Sue talking about herself as a mental patient?”
Good question. Note, that most of you are far too polite to ask and instead simply shake your head at yet another inscrutable point I’m trying to make to the land of the rational. That’s very nice of you. Avoidance is a solid step to prevent systemic upheaval. Carry on.
Have you ever tried to find a psychiatrist? It is a tricky business. Psychiatrists are considered just below surgeons in terms of ego and “eccentricity” by other health care providers (I did a survey) and because I – the patient – am at a disadvantage in terms of credibility, they have the power to go along with the paycheck and the prestige.
There are a few things I like to have with a psychiatrist
- Accept my insurance (many don’t accept ANY insurance)
- Taking new patients (many have a waiting list or simply no list)
- A 24-hour on call service (many have an answering machine and tell you that 911 is their 24 hour solution)
- Open lines of communication with my therapist whose has treated me for 9 years (many don’t make time to talk to therapists b/c their schedules never seem to work out)
Otherwise, I don’t care if it is a man or woman, old or young, tall or short, even location is pretty flexible with me because I drive and have typically had an easy to adjust schedule.
Notice that how they treat or engage me is not on the list. It was after I sat in the office of a surgeon-turned-psychiatrist sobbing hysterically as she berated me for being irresponsible (with my therapist on speaker phone telling me to LEAVE NOW) that I realized being treated as a human being was not relevant. She did offer to validate my parking as I fled her office.
Here are a few examples – most of which my therapist could to some degree verify if it were necessary
- The psychiatrist who postponed an appt, then kept calling refills (for about 4 months) and then sent me a termination letter because I was non-compliant with appointments. ??? He continued to refill my meds for months afterwards.
- The psychiatrist who wanted to take me off my meds and start fresh on appt 1 (I said no) and then at app 2 announced she was closing her practice to move out-of-state for a new job. She handed me a list of possible new doctors and told me there would be no copay charge for this visit. Then she refilled my meds for months. Her office was empty the next day.
- The psychiatrist who left me sitting in his waiting room while he left to drive to NYC for a conference. Literally, at the same time. He called my cell phone from the road while I was sitting there. He offered to reimburse my parking and also continued to refill my meds.
While awkward, this is terrifying because one needs a doctor. Another doctor just disappeared for weeks on end with no message, no nothing. My medication refill was screwed up by my pharmacy so I was running out of medication and somewhat desperate and panicked. My therapist spent hours trying to help me – hours for which she can’t bill her much lower rate – and was going to try to convince my PCP to give me at least one refill (a very big no-no) when suddenly my doctor reappeared with no explanation. I was genuinely worried something terrible had happened and couldn’t understand why no one checked her messages if she had perhaps been in an accident – I assumed she had a backup plan with another doctor. Nope. No explanation, she said she was busy. That was it. She has no backup plan because it gets confusing and the patients tend to annoy the “on-call” doctor. Yep. We are an annoying bunch.
In spite of all of this, I have tried to feel like I am an empowered consumer of services – I’m white, educated, insured and knowledgeable. I’ve worked within the mental health system. I’m a blogger!
Monday, I called a former providers office to see if they were accepting new patients. When I had been there in the past for about 3 years, it was okay. Not great – I spent a lot of time walking along very, very long hallways feeling hurried because time is money. But I assumed because it was a large practice, there would be backup doctors. I was wrong. My doctor traveled to Europe for several weeks and I had an emergency, but there was no one to help me. Several months later, when I came to my usual appointment my doctor informed me that she was transferring to an inpatient role and had to discharge me. Immediately. There were no other doctors in her practice who could see me, no waiting list, no nurse practitioner. Just a fist full of scripts and the suggestion I call my insurance provider for referrals.
That was it.
I was stunned. I called the office to talk with the medical director who never returned my call. So I slinked away and pursued other options. But I recently decided to call them back – on Monday – because I thought perhaps new ownership would have improved things. That’s when I learned the truth from “Sue” the appointment scheduler.
My doctor had never left the practice and was seeing outpatient patients.
What? I kept saying “what?” over and over again while “Sue” asked me if I wanted an appt. I started to cry. Sue referred to me as “an assignment” who had been transferred, perhaps inappropriately. I told “Sue” that I was a human being, not an assignment. I asked how I could file a grievance or speak with an ombudsman or something. She told me that the Medical Director would call me and gave me no further information. She did apologize for calling me an assignment.
I was in shock. I went to the website of this very large health care provider to find the patient advocate information.Nothing. There was a paragraph about the concept, but no phone number or email or name. There was information on accreditation board – but the email bounced and the phone number went to a mysterious generic voicemail without a HIPPA statement so I was suspect. I called the main number who just routed me back to “Sue” …
And I have to choose between trying to hold them accountable for a very troubling betrayal of their ethics or finding a doctor.
So, in short (or not), that is when I realized that I am a mental patient.
- Our meds are refilled to the point that my list of scripts on file with the pharmacy is pages long with no clarity on what’s current or what’s been changed.
- If I ask a doctor with a thick accent to repeat themselves because I truly cannot understand what they are saying, I am told that “being rude is not helpful to my recovery”
- Someone hands you a form to sign and you see a list of diagnosis that no one ever discussed with you. Have you tried to getting a diagnosis removed from your “permanent record?” Good luck.
- If there is a reception staff, they announce your name to everyone and will process your copay while filing their nails or talking with a coworker about Days of Our Lives.
- Waiting rooms are filled with hopelessness and despair. But not a hint of compassion aside from the complimentary box of tissue for “the weepers.” Bathrooms don’t lock because we might do bad stuff in there. Furniture is leftover from someone’s home renovation.
- No casseroles. Google “mental illness” or “autism” and “casseroles” to see how deep that pain runs. I was shocked and I wrote the piece.
- Elected officials are okay with their staff describing constituents as “paranoid” because they mean well. It is not a slur if you mean well. Or something. But I should trust them to make UPMC and Highmark work it out. Am I paranoid for not trusting them? (Yes!)
- My only remaining unexplored choice at this point is Mercy Behavioral which is suing the government to avoid providing birth control. Do you think a lesbian feels comfortable with that option? Am I supposed to go back into the closet to get mental health care?
- Did I mention there aren’t enough psychiatrists in Pennsylvania?
It doesn’t matter that I have all of this privilege although I can imagine barriers to decent care are oh so much worse for those who do not. I’m still a mental patient. I’m not angry or violent or nasty or mean. I show up for appointments and I’m dressed in work clothes and polite. Short of baking cookies, I’m unsure what else I could do to be a “good patient” – except be cured?
Have you ever been to an ER for mental illness? Have you ever visited a family member in an inpatient facility? Have you tried to navigate case managers and research medication side effects and find support groups and access entitlement programs like food stamps?
Did you know that when Forbes Regional expanded their inpatient psychiatric unit because AGH closed their unit, they added new rooms – some with three beds, like a 1960’s ward. What they didn’t expand was the recreational space or the treatment space. There are not enough seats for meals so people have to eat in their rooms which they are not supposed to do. The room used for group therapy is so small that there are at least 5 patients in the hall trying to participate because participation is required. They turn off the phones and access to the laundry facilities to make you participate even though you are basically sitting in a hall wondering if you’ll get a seat at the next meal.
Tip of the iceberg.
It doesn’t matter what sort of advocate I am or how I invest my time. It doesn’t matter that I’m smart and witty and insightful. It doesn’t matter that sometimes I am actually right about issues. It doesn’t matter that my partner is a lawyer.
What matters is that I have a chronic illness that is considered shameful by our society. Period. I have more in common with John Rush, the lady weeping in the corner and the man having a few drinks at lunch to maintain his “energy” at his law firm than I have with you. We are all victims of a stigma that prevents us from accessing the very real treatment options that exist. And our status as the great unwashed inevitable chips away at the measure of dignity and self-respect we cling to as we navigate systems designed without thought to either dignity or respect.
I don’t have the luxury of fighting back because I’ve been on a medication for 9 years and am approaching a critical phase where it could impair the functioning of my organs. I need a doctor. And I suppose I will swallow my pride or go into the closet to stay alive. Is it karma paying me back for my mistakes or a systemic failure of vulnerable people? I don’t know and without help, I’ll never find out.
Oh, what about WPIC? Yeah, let me tell you about the intake process for outpatient care at WPIC sometimes. I’ll need props and legal disclaimers.
I am a mental patient. Hear me whimper?