I’m sorry

A week from tomorrow my materials are due for my tenure evaluation. What this means is that after next week the college I work for is going to decide: either I get a promotion, or I get fired. There is no in-between.  I’ve been working to obtain the desired position for most of 2-3 decades, and preparing for this evaluation practically non-stop for the last year. If I don’t get it and instead lose my job, my husband and I will have to move to who knows where to do who knows what, and I don’t even want to contemplate what this means for my treatment or my mental health.

I have plenty more unsaid stuff to say but I have been finding it hard to really invest in writing about it, because I keep thinking about the upcoming deadline and evaluation. I hope you understand and I’m sorry.

 

 

Escape from ‘codependency’ treatment

At the time of my first hospitalization for depression and suicidal urges, during my junior year in college, I was badly broken by the loss of a relationship, again.  The term ‘codependent’ was a hot new thing back then, so both in the hospital and subsequent residential treatment I was required to participate in addiction groups. I had no problems with substance use — I was just supposed to mentally substitute the idea of a boyfriend in the place of alcohol or drugs whenever they were mentioned by the group or in the reading materials. People kept telling me: “You can’t love anyone else until you love yourself.”

As someone who was raised to hate myself, I found that statement a vicious circle, a trap, one of the most depressing things ever. I was a psychology major and I knew enough about unconditional positive regard and secure attachment and so on to know that people don’t develop healthy self-concepts in a vacuum, they do so through loving relationships. What is a person supposed to do, then, if they didn’t receive what they’d need to love themselves, and therefore aren’t equipped to love others but only get addicted to them and hurt by them?

The impossible instructions I got were that I shouldn’t be allowed to become really attached to anyone until I had spent enough time alone to somehow figure out a way to love myself. OK, not entirely alone, because I could still have my therapist, and my addiction group. As if their alienating piles of pamphlets about alcohol and higher powers were going to comfort me, let alone help me feel something for myself that I didn’t know how to feel.

I felt that I was being criticized and blamed for still wanting relationships. I was being seen as leaving too large of a relationship footprint — after all, in my hand, a loving hand became nothing more than a dangerous substance! In this view, my basic need to connect with others was destroying more than it was helping, making me a burden. Seeing myself this way only strengthened my wish to die, and I started fantasizing about ways I could get myself killed and turned into food for homeless cats.

What I did instead was leave residential treatment with another patient, to start a life together – after we signed forms acknowledging that we were going against medical advice by doing so. Our relationship, which didn’t last, was difficult even from the very beginning. But it was a way out and a way forward for both of us.

I fully understand that people with low self-worth are in danger of being mistreated in relationships, and are unlikely to be able to enjoy or give as much healthy love as others without this vulnerability. Treatment should help us to get better at recognizing when we’re at risk and thriving when we’re not. But a treatment that teaches us we’re unfit to be in relationships is not going to improve our self-worth or our relationship skills. I was lucky to escape.

 

Dangerous ketamine clinics

The clinics we need to worry about aren’t necessarily dirty back-room operations. They have nice-looking websites, use all the right buzzwords, and offer convenient services in comfortable offices at reasonable prices.

Consider the following quotes from a website advertising a new clinic:

The (clinic name) offers exciting and cutting-edge IV infusions for the treatment of Depression, Bipolar Disorder…. administered by .…a highly experienced ….anesthesia provider that holds a national board certification in anesthesia by the NBCRNA.

Currently we do not require a referral for most cases of unipolar or non-rapid cycling bipolar depression…..We are Now Accepting Appointments. We welcome same day appointments, call us today to schedule…. Introducing our NEW Membership pricing option. Buy a membership for $(price) per month and receive discounted infusions…. If you are currently suffering from suicidal thoughts, please contact your local crisis center or call 911.

When the provider from this clinic advertised their services on a ketamine-related message board, I replied with the following question:

Please explain how a clinic can claim to ‘treat’ psychiatric disorders without requiring that their patients be properly diagnosed and monitored by a qualified mental health professional. I mean, if your patients are self-medicating a condition they self-diagnosed, how is that different from recreational drug use? And if your patients really have serious psychiatric disorders, wouldn’t they actually need mental health services, and not just whatever you’re offering?

I’m not saying this just to be obnoxious — I would really like to understand the logic behind a clinic like this. And I’d also like you to understand my serious reservations about it as a patient who is doing well receiving ketamine for severe, treatment-resistant depression.

I want the treatment that saved my life, and the lives of so many others, to be given safely and taken seriously. I don’t want psychiatrists to continue to refuse to work with patients who are benefiting from this treatment. I want the treatment to someday be covered by insurance, and I want people to stop acting as if patients like us are just taking stupid risks to get high. For these reasons I am concerned that clinics like yours are hurting people like us.

The provider quickly answered:

We understand your concern….Here, we do not diagnose mental illnesses and we make that very clear to all of our patients. We require that every mental health patient is diagnosed by and remains under the care of a mental health professional. In fact, we mandate that they provide us with the name, address and phone number of their mental health provider.

…we aim to offer an ancillary ketamine infusion service that most mental health providers support but are not willing to provide themselves. We are able to confidently administer a GENERAL ANESTHETIC in any setting and we are trained to manage any and all possible serious life threatening complications including acute tachycardia, severe hypertension, cardiac dysrhythmias and loss of patient airway… 

I answered:

I completely understand that mental health professionals rarely administer ketamine themselves (for good reasons) and think it is great that specialists are stepping up to provide ketamine to psychiatric patients on a consultant basis.

But given that this treatment is for patients at high risk for suicide, psychosis, mania, and other dangerous/severe symptoms, I do have an issue with advertising same-day service with no referrals required, even if you do ask for an address/phone number. There is a difference:

– A referral indicates that a mental health professional who has thoroughly evaluated the patient agrees that ketamine is appropriate for their diagnosis and treatment history, knows the patient will be receiving ketamine, and is on board to monitor the patient’s mental health and coordinate their care throughout this process.

– An address and phone number indicates that the patient has a mental health professional’s address and phone number.

The provider replied:

Thank you for your response. I would like to respond to your comments above which are based on assumptions and not on our current policies or procedures. Let me clarify, at (clinic name) we only treat uncomplicated unipolar and depressive phase of bipolar disorders without referral. We do NOT treat patients that are actively suicidal nor do we treat any patients without referral if we feel we may be putting them at risk of further mental health complications. We perform mania, psychosis and suicidal ideation screenings on all patients prior to Ketamine therapy. These type of screenings do not require mental health certifications or degrees to conduct. Patient safety is our priority and we are extremely confident that our current policies and procedures that are in place ensure the safety and continuity of care for all of our patients.

I was speechless. But here’s what goes unsaid:

No, I’ve thoroughly read your website and what you’ve said right here about your policies and procedures.  My concerns aren’t just “based on assumptions.”

 You said: “Currently we do not require a referral for most cases of unipolar or non-rapid cycling bipolar depression,” which implies that you consider “most cases” of unipolar or bipolar depression to be “uncomplicated.” But patients with these disorders ARE at high risk for mental health complications by definition. Just because someone denies manic, psychotic and suicidal symptoms before their infusion doesn’t mean they won’t encounter these or other serious mental health symptoms before or after they leave your office. And why would someone with truly “uncomplicated” depression require an experimental treatment like ketamine infusions anyway?

That you are “extremely confident” making complex clinical decisions based on a few screening questions shows a profound lack of judgment. Mental health screening questions are just tools, and how much training is required to use them depends on what you’re using them for.  People don’t need specialized training to use a knife as a tool for spreading butter, but they sure better have that training if they want to use that tool to perform brain surgery! While you say you will not treat patients if you “feel” you may be putting them at risk, you are making this decision with neither the necessary patient assessment data nor the necessary expertise to able to use your feelings as a gauge of mental health risk.

A clinic like this is a tragedy waiting to happen.

Battle

Chris Cornell’s death hit many of us quite hard, and one of the things I keep hearing is that it was especially hard because he was someone who had beaten his demons. I saw very similar comments when the toxicology report recently came out about Carrie Fisher’s death.

There is no denying that it is hard. Mental illness is really hard. But that so many people consider relapses and suicide risk shockingly unexpected outcomes of mental illness suggests a profound misunderstanding of what it means to battle it.

Despite what movies might have led you to believe, mental illnesses like depression and substance use disorders don’t have a single cause — and treatment rarely is a matter of exorcising particular demons (or memories). Even psychologists who believe that there is something to be gained from reaching into and airing out a traumatic past believe that this process requires repeated, painful efforts over a long period of time, and that success in this process is rarely complete or permanent.

Rather than derive information about surviving mental illness from movies attempting to depict therapeutic treatment, consider the horror genre.  When it seems as if the evil creature has been killed, but it comes back alive after you’ve breathed a sigh of relief, that is what battling mental illness is like. When you’ve discovered that the threats are coming from inside the house, from a place or person you trust, that is what battling a mental illness is like.  And we’re often talking about recurring battles over a lifetime, in which the enemy might lay low, call a truce, and fraternize with our side for a time. We need to celebrate each battle that is won without prematurely assuming that the war has come to a happy end. Labeling someone as a “success story” might make it more difficult for them to ask you to be there at their side, ready to continue the fight, when the enemy silently regains enough strength to attack again, as it often does.

And just because we’ve won the battle doesn’t mean we’ve won the war.

 

Afraid that I may lose access to treatment

The psychiatrist who oversees my care, prescribes my medications, and referred me for ketamine treatment, is closing her practice. Finding a replacement, however, is proving to be extremely difficult.

Most clinics and doctors that I can get to from the rural area where I live have a waiting list of months to years, or have stopped taking new patients all together. Worse, even when a clinic or a doctor in private practice is willing to schedule an initial appointment, they refuse to work with me once they find out that I am going for monthly ketamine infusions. So far:

a) Many just said they won’t provide me services  — without offering me any explanations, alternatives, or resources in case my treatment needs were urgent. Both irresponsible and cruel, individuals responding this way to someone who is trying to access treatment by a psychiatrist should not be working in the mental health field.

b) Others have apologetically said that they don’t feel that they have enough knowledge/experience with ketamine treatment to effectively work with me. It really is time that these psychiatrists start learning about the treatment and rethinking whether refusal to work with ketamine patients is really in the best interest of these patients as they seem to assume. After all, what level of expertise with ketamine are they thinking they need to have? These doctors probably already have plenty of patients receiving chemotherapy and other specialized medical treatments — and though they aren’t experts in the specifics of those treatments, they monitor their patient’s mental status and consult with his/her other doctors as necessary to coordinate care. Why should ketamine patients be any different? Of course it would be advantageous if all my healthcare providers could have advanced training and experience with all my disorders and treatments, but I’m in no position to hold out for unrealistic ideals. Isn’t a psychiatrist who lacks expertise with ketamine still better for me than being left without a psychiatrist?!! Because seriously, living where I do, those may be my only realistic options.

c) One psychiatrist that I spoke with said that by receiving monthly ketamine treatments from a specialist while having my psychiatric care and medications overseen by someone else I am inappropriately splitting my treatment and seeking drugs from too many doctors at once. This doctor really needs some basic education about ketamine treatment. First, it is entirely standard for ketamine infusions to be provided by a specialist who is not the patient’s primary psychiatrist. Few psychiatrists administer ECT themselves either – they refer their patients to a team of specialists to provide the electric shocks and anesthetic drugs, but they don’t accuse their ECT patients of inappropriately splitting their treatment by pursuing this arrangement. Second, ketamine treatments for depression are not illegal, they are simply off-label. If a psychiatrist is comfortable prescribing other treatments off-label, they really ought to ask themselves why they are so unusually judgmental about this one, and keep that personal bias in check when talking to patients.

Finally, I wish all of these individuals could understand that I have provided informed consent to receive this off-label treatment. If any psychiatrist is afraid to work with me because they think I might sue them for letting me exercise my right to receive a potentially life-saving experimental treatment, I’d say: Let me sign a waiver. I’m not asking you to give me ketamine infusions, just to allow me to receive them under my own volition. The risks are mine, and the decision to take those risks should be mine. For me and other patients like me, the risks of not having this effective treatment are worse.

I need to have a psychiatrist. And unfortunately, both my difficulty finding one and my fears that this will soon prevent me from continuing ketamine treatment are really starting to take a toll on me.

—————-

Update: I finally found a psychiatrist willing to see me — several hours away from where I live and with a limited schedule that will require me to miss work for appointments. But I’m very relieved to have found one!

Automated/fake encouragement can be worse than saying nothing

I used to belong to an on-line writing group, where people were supposed to post their daily progress and give feedback on others’ posts. Though the whole point was to increase accountability, community, and support, what I often received was the opposite of that. I’d get messages saying “You rock!” and other empty crap on days when I hadn’t accomplished anything at all.

On the internet I’ve been seeing random messages like “You are loved!” pop up as if this is supposed to help an otherwise hopeless/suicidal person feel better, but for me, this is like putting salt in a wound of loneliness. If “love” is just computer-generated sap expressed by someone/something who doesn’t even know me, then what the fuck would make it worth living for?

Showing up, listening, being real – these things can really matter and help. But empty expressions of praise and love are the opposite of caring, and only make a mockery of what accountability, community, and support even mean.

Two years: I don’t take this for granted

It has been two years since I started ketamine treatment, and it is still working.  I’m currently dealing with pretty extreme job pressure/stress, and managing it better than I managed most ordinary, day-to-day tasks before ketamine. I don’t take this for granted.

I travel for an infusion every 30 days. To make the treatment last for the time in between, without dealing with the cost of off-label nuedexta or the hassle of finding a compound pharmacy to make a generic version of it, I’m currently taking dextromethorphan 30 mg (Robitussin Long-Acting CoughGels sold on Amazon) along with a little bit of Paxil (5 mg) twice each day. Paxil causes me terrible GI upset and does nothing for my depression, so the only reason I take any at all is to help extend the effects of the dextromethorphan, which in turn helps extend the effects of the ketamine.

I’m sharing these details because too many disbelieve that ketamine is a real, long-term option for living with depression. It can be. For me it is.