This is not a jovial or lighthearted post. This is a venting post. I may even venture into ranting territory. I would like to apologize in advance for doing all of the complaining and none of the problem solving. I recognize that that can be non-productive. But I’ve got some issues with our mental health system which have been festering for months, now, and I really just need to give voice to my lived experiences. That said, should any readers have thoughts or suggestions to improve my current situation (or, what I’m sure, is the current situation of many more like me), please share them! And if anyone knows of any resources which may be helpful, send them my way and I’ll be sure to link them so that, hopefully, others in similar situations will be able to find some useful tools here. I’m feeling pretty out of options at the moment, myself.
I’ve been struggling to come up with an adequate metaphor for our mental health support system, and I still am. I can label it – consistently inconsistent, frustrating, slow, over-complicated, etc. But a really good metaphor? Maybe a maze. Yeah. A crazy-house-mirror-maze. Only the mirrors are shattered in some areas, so you’re gingerly tiptoeing on broken glass, trying to make your way out without getting lost or injured; trying to walk the line between self-advocacy and being perceived as “overly-demanding/rude/aggressive” (because these are “behaviors” which will get you put on hold, disconnected, or asked to “calm down” in a condescending, but slightly foreboding tone that promises you’ll be in trouble if you continue to “overreact” to the situation).
If you know me, you know that I’m all about being polite and patient. Sometimes to a fault. You also know that I know many case managers personally and professionally. I am currently one semester shy of my Bachelors in Social Work. I was literally studying to become a case manager. I’ve also been on the receiving end of “self-advocating clients” who were, truly, being belligerent and unreasonable more than one time. So, I am not speaking broadly about all case managers in this post. I have also carefully considered the facts of the situation and believe that my current frustration, anxiety, and general agitation are justified and valid, which is why I am sharing my thoughts and experiences with you now.
I have absolutely no desire to be disrespectful, or to make what is already an immensely difficult job harder by being a “problem client.” But I have, over the course of 5 months, been put through the wringer on several levels, and, as the Cold War Kids said, “Hang me out to dry, you’ve wrang me out too, too, too many times”.
I am currently diagnosed with Post Traumatic Stress Disorder (PTSD) and Bipolar Affective Disorder (BPAD). I take medications to manage both diagnoses, and, in a perfect world, I would also be having sessions with a regular therapist once or twice weekly for further stabilization and management of my symptoms. But this is not a perfect world.
Here are the facts of the past five months of my life and my interactions with my primary doctor, the PHP and IOP programs I attended, the State of Vermont, and the crisis case manager I’ve been seeing at a local mental health organization until my insurance kicks in:
- In early November, my life circumstances changed drastically, resulting in me living truly abuse free for the first time in…well… ever. And I was essentially hit in the face with 28 years of trauma and abuse. I developed severe PTSD symptoms.
- In Mid-November, I did not sleep for 10 days straight. I did not eat. I lost 12 pounds in those 10 days. I was wired. I was having flashbacks and dissociative episodes like it was my job. I was depressed, but it was agitated depression. I could not sit still. I could not focus. I was making reckless and unhealthy choices. I was a complete and utter wreck. I went to Urgent Care on day 5 of no sleep, which happened to be a Friday. The PA I saw there was wonderful. She called the local mental health organization and was told by their crisis response that I’d be able to see the psychiatrist on Monday. She gave me a small RX of Lorazepam to help me sleep. Even with the Benzo, I did not sleep. I was doped up, but I was still wired and jittery.
- Monday came. I was told I did not have an appointment with the psychiatrist, but the referral was in. All they could do for me was get me in to see a crisis counselor. The extent of the crisis counselor’s advice? “I get insomnia sometimes, too, and I count backward from 100 to sleep.” (I think I showed immense restraint in not yelling at her.)
- I went back to Urgent Care that night. They told me if the Lorazepam wasn’t allowing me to sleep, there was nothing else they could do. They established an appointment with my PCP for mid-week.
- I finally crashed on Wednesday night and slept. I crashed hard. I became very depressed, very low energy. This depression continued for a month.
- My PCP started me on a very low dose of Zoloft, and made another referral to the same psychiatrist.
- I’ve been trying to get in to see this psychiatrist for 5 months, and I’m told it’s pretty much the only option available to me as psychiatrists in Vermont are difficult to come by.
- Waiting on referrals, going to appointments only to be told I needed to wait longer, having my PCP assure me the referral was in and active while the mental health agency insisted it was not – these were all major contributing factors to me spending a week at inpatient.
- After discharge from the inpatient unit, I spent the next month and a half in PHP and IOP. The case managers there promised me, up and down, that there was no way in hell they’d discharge me without adequate aftercare established, including therapy and psychiatry. Not only was I discharged without those appointments established, I was also discharged with no insurance and no means to maintain my medications.
- We only discovered that my insurance had lapsed on my second to last day of IOP. That was a Friday. I applied online for State insurance first thing Saturday morning. I called on Monday. I set up an appointment with Community Action to try to help get my application expedited. I tried so hard to be on top of my game and not be discouraged. The person I spoke to at Community Action, whose entire job is literally to help people get State Insurance, told me over the phone, “You’d be better off calling them directly. But have a book. And a phone that won’t run out of charge, because you’ll be on hold for a long time. I can’t see you in person until Friday, but I’ll set that appointment and if you don’t come, honestly, I’ll just be happy to get a break.” Verbatim. To me. Over the phone. I get burn-out, but how far past “done” do you need to be to say that to someone calling you for help?
- I called the State people, and I’m very pleased to report that that phone call was not nearly the hell the Community Action person made it sound like. I only read three sentences of my book before a real person answered. That real person, though, told me I was looking at an up to 30 day wait. Running out of medications with no money to get the final refills, no appointment to get further refills written, no therapy appointments set up, and nothing with the psychiatrist, either.
- All of the back and forth and the apparent inability to communicate among my primary care doctor, the physician’s assistant I saw at Urgent Care, and the mental health agency for a referral to psychiatric services ended up costing me my career (and with it, my health insurance, which is creating the current stressors I’m facing) and my schooling, because, let’s be honest here: if I had just been able to see someone back when all of this started, the more intensive interventions would have very likely been unnecessary and I would probably be writing this blog in my spare time between work and homework and mom-ing. (Ok, really, I probably wouldn’t have time for this blog. So, maybe that’s the silver lining.)
- Today, the crisis coordination case manager I’ve been seeing in the interim until I can get established insurance and regular therapy sessions calmly told me I’m in serious jeopardy of not being able to maintain my medication routine until insurance kicks in, because of the out of pocket cost and because my primary doctor is unwilling to fill the types of psychiatric ‘scripts one needs to manage BPAD. In addition, insurance and all that aside, I can’t even get on the calendar to meet with the psychiatrist until I’ve met with my PCP and received a referral. A referral to the psychiatrist. You know, the very same referral that has, according to my PCP, been sent no less than three times already.
- Today, I mentioned to my interim crisis case manager my concern that there may be a mixed-state episode in my near future based on what that’s looked like in the past (those 10 days without sleep, et. al.) and some current symptoms I’m experiencing: She responded by asking, “How did you even get a Bipolar diagnosis? That’s not Bipolar. I’ve worked with a lot of people with Bipolar and what you’re explaining isn’t Bipolar.” (How did I get diagnosed? By sitting down with a fucking psychiatrist and telling her exactly what I’m telling you, that’s how!)
- This interim counselor is not aware of this fact, but it took me a solid three weeks to even accept the Bipolar diagnosis. I was very resistant to it at first and did my fair share of pushing back against it before actually accepting the fact that the psychiatrist I was seeing through the PHP knew what she was talking about and was there to help me get well and stay well. So hearing the case manager (who, by the way, is NOT an MD and has spent a grand total of 75 minutes face-to-face time with me in the last 2 weeks) not only question the diagnosis, but essentially state flat out that I do not have BPAD was not only infuriating, but also incredibly invalidating of all of the work I’ve been doing toward accepting and attempting to manage the diagnosis.
But I can’t say that. I can’t say any of it. I have to hold it back, because if I start to say these things, I’ll likely end up yelling them at this point and getting myself in trouble. Because when you’re meeting with or talking to these particular caseworkers, you’re not allowed to be upset. “Upset” is for Therapists. “Medication concerns” are for Psychiatrists. “Referral requests” are for Primary Doctors. Polite acceptance, it seems, is all the Case Managers with whom I’ve been working have room for. And I am so far beyond “polite acceptance”. I am frustrated. I am angry. I am saddened by the stated of things.
You’ve heard of jumping through hoops? I’m bouncing around among five different agencies/offices and perpetually being told to talk to someone at one of the other phone numbers. It’s like a line of people holding the hoops through which I must jump, but every time I jump through one, the fucking person holding that hoop just moves to the back of the line and waits for me to jump through again.
It feels, in many ways, like this system is designed to allow people to fall through the cracks. If I wasn’t a stubborn, persistent, determined, sometimes pain-in-the-ass person, I would have completely given up on this by now. As I write this, I am discouraged, yes. But I am also genuinely scared. I’m scared that I’m going to have to taper off the medications which are still not even at full theraputic value in my system yet. I’m scared about all of this waiting leading to a destabilization and possibly another hospitalization for me. I’m scared of the implications of all of this. I see the “cracks” for what they actually are: gaping holes. And I’m terrified of the fall.
And, to end, I’d like to acknowledge a few things about privilege. In some ways, yes, I am in a position of disadvantage in our society: I am a woman, I am currently a single mother with no income, I’m an abuse survivor, and I have substantial mental health diagnoses.
But, in many other ways, I am very privileged. I am white. I am a Natural Born U.S. Citizen. English is my primary (and only) language. I am perceived as a cis-gendered, straight person. I am educated. I have access the internet. I am literate. I have some knowledge of and familiarity with the system which I am attempting to navigate. I have a steady work history. I have a car and a license. Despite being unemployed, I am not at risk of homelessness. I have family and friends supporting me in many different ways.
All of these factors place me at a great advantage over others who are attempting to gain support and services through this same system, and if I’m having so much difficulty with it, please take a moment to consider how hard it must be for those who do not possess the same privileges.
Our system is broken. And with the current administration’s plans for the future state of health care in this country, it is at risk of becoming irreparable. We need to fix it. We need to fix it before it’s too late.