Monday, November 29, 2021

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  • I am so sorry! That is awful.

    I think it happens frequently. I just saw a hematologist for the weirdly elevated serum B12 and he suggested Prozac for my fatigue.

    There really ought to be some checks in the medical system every time a psych med is prescribed for a completely non-pysch medical situation. Wouldn’t common sense dictate we get people measurably more medically “normal” (infection cleared, TSH level improved, pain treated, etc.) before we diagnose them with depression? Does situational depression need meds? If we’re sick and in pain, we’re going to be down, low energy, etc. Fix the sick and in pain part first.

    That check rarely happens, though. People with hypothyroid get Prozac. People with vitamin D deficiency get Prozac. And you get meds… And you get meds… We ALL get meds!!! (Oprah reference.)

    I’m really sorry you are part of the shitty “Inappropriately Medicated” club. None of us enjoy it much and it’s really hard to quit.

  • Oh, they’ll still fat shame. If you don’t hear it out loud while you’re talking with your doc, it’ll be throughout your medical chart: office visit notes, “Problems” lists, in referral notes sent to other providers…

    I don’t really mind a single “Yeah, she be fat!” diagnosis on my “Problems” list. It’s true, after all, and does have quantifiable stats to determine it. But I don’t know that physicians need to be making further soft diagnoses around being fat. And they will, usually psychological ones.

    The biggest problem facing patients with stigmatizing health issues (obesity, smoking, substance use, mental health diagnoses) is that those diagnoses are more likely to ensure that you DON’T receive care outside of those diagnoses.

    I have pulled a number of my recent referrals and they all have several references to years-old diagnoses for depression, anxiety, or alcoholism. The referrals were for: cancer screening (specifically endocrine), an ascending aortic aneurysm of 4.8 cm, and persistently high serum B12 (while my “active” B12 is low normal), also usually a disease marker. For all 3 of those I have reams of lab results, in one case over the course of two years.

    But I just need Prozac.

    It’s ugly out there, people. Refuse these screenings. They will just be used against you in your care.

    Get your records. Demand amendments to your records, if they’re biased. You have the legal right. Learn key phrases. “Document your refusal to treat and why in my record and refer me elsewhere.” Doctors do not want to put “I’m not going to treat a crazy person.” in writing. Looks bad. If they don’t have another legit reason to refuse testing, they’ll cave.

    Your State has a Licensing board. Report the really egregious offenders, if you don’t mind a crapton of paperwork. I can almost guarantee your local disability rights organization, local NAMI, local ACLU, & State legislators are not going to give a crap that you’re being systematically discriminated against. They certainly don’t in Maine.

    The Licensing Board can be a real inconvenience for a physician, though. Time, minor cash, but the biggest threat is loss of reputation and, potentially, their career. It may make them think twice about their actions in the future. Remember, there are also specialty organizations they belong to. Save all your Lincensing paperwork and forward the complaint on down the chain.

    You are not powerless.

    And there ARE excellent doctors out there. My sleep apnea guy, my ENT (thus far, he’s new), my gyn, my cardiovascular specialist… All excellent and professional. “Just the facts, ma’am.” It takes many tries and I’ve just given up on the PCP front. I am thinking naturopath at this point, if they can do referrals to specialists.

    When switching docs (or getting referrals), if you’re not in a terrible hurry, review those records first! You have that right, noted on the standard Release of Information form. Send clean records to the next doc. Labs, imaging & symptoms only. “I want your opinion. I already have theirs.”

    And don’t make your records worse with those screenings!

  • I do not think there is anything you can say to a doctor to change their mind about anything. I wouldn’t lose too much sleep trying.

    Lies are hard to keep up. It’s probably safest to have a stock answer as to why you don’t participate in routine screenings. Something like, “Those screenings are a conflict of interest. The PHQ-9 & GAD 7 were written by Pfizer, which sells psychiatric pharmaceuticals. They did not provide those tools gratis out of the goodness of their hearts.”

  • I, too, lie on those screening tools. You have to, or you’ll be put on a med that makes you non-functional while doing absolutely nothing to improve your “symptoms” of depression or anxiety.

    I try to fight. I am scheduled to chat with our local disability rights advocacy group today about “diagnostic overshadowing.” I wanted to make it a more global issue: Those with mental health diagnoses (past or present) do not receive the same medical care as those without.

    And we die earlier as a result. Years earlier.

    It is a serious problem up here and I’ve experienced it for years. I’d like it to be addressed legislatively.

    I have two recent referrals from my PCP’s office that very clearly show evidence of serious issues, one of which is a 4.8 cm ascending aortic aneurysm! I have imaging and everything and, still, that referral goes over in detail my psychological diagnosis history and my past alcohol use (Last detox 2016, thank you very much.). The one to hematology goes so far as to call me a “difficult patient” who makes too many demands on staff time.

    The office’s administrative chaos really isn’t my fault. Nor is the imaging department’s sloppiness. Both of which, again, I’ve documented.

    I feel pretty strongly that I can prove a pattern of abuse and neglect with this doc that may have set my care back a year or more. But most people in the midst of serious trauma do not have the kind of energy I’m having to expend to get anyone to give a flying hairy rat fart in space.

    I’ve been there. And you accept whatever help is given, even if it’s actually making you worse in the long run. At least, someone is listening. Right?

    So it is vital that these unhelpful “screening tools” go away. If there is no standard of care associated that results in measured positive outcomes, why are we doing it?

    Truthfully, I think is all tied up in systemic misogyny and the myth of “the hysterical female.” Women still do make up the majority of people prescribed psych drugs in the U.S. Bogus screening tools allow lazy doctors to ignore real issues, like autoimmune diseases, which often take years and a whole lot of dogged persistence to get diagnosed.

    And you have to be willing to fight being routinely abused, gaslit, & diagnosed “crazy” the entire time.

  • I understand completely. It really only takes picking the wrong primary doc out of a hat from your list of in-network providers to poison all local doctors against you.

    Maine docs require referrals, even if your insurance does not. If you have the wrong primary, you will never get appropriate care. Most people will never figure out why, as their docs will lie to their face and pretend to be on their side.

    I have gotten good about maintaining my own set of lab and imaging records, because I know what my office notes look like. Those aren’t being shared anywhere, if I can help it.

    What I realized only recently is that you need to ask for a copy of any referrals that went out on your behalf. If you ever have a mystifyingly bad appt with a specialist who seems to just ignore the mountain of lab and imaging evidence you sent in advance, that referral is probably why. Your PCP sent notes that basically say “Ignore the cray-cray person.”

  • The terrible thing about trauma is how frigging normal it becomes to you. You become desensitized to hearing the most gods-awful stories, even – and perhaps especially – as a trauma survivor yourself. “Yeah. That’s just how things are. No one gives a shit. Suck it up, buttercup.” That’s my inner dialog. Because over and over again, it is proven to you that no one cares. Doctors offering zero follow up after asking you to relate personal trauma history to them is but one example and a fairly mild one. (See? I told you. My reaction is “Suck it up, buttercup.”)

    The reason I say that doctors not referring you to services related to coping with or – wouldn’t this be fricking amazing – systemically addressing your trauma in an affirming way is a mild microaggression is that we all know medical doctors can be, and often are, a lot more actively abusive.

    Once you are psych-labeled, medical doctors have a tendency to think that is the origin of ALL of your medical issues. I have a documented history of depression, anxiety and alcoholism. Last detox 2016. Tapered off psych meds and haven’t needed treatment (am better without it, in fact) since 2017.

    It took me two years to finally get two large parathyroid adenomas removed in March of 2021, because most of the symptoms are attributed to depression, primarily fatigue and bone & joint pain. I had scans showing bone loss (osteopenia) at age 49. I had many, many, many high calcium & parathyroid hormone labs. (“But not high enough! You need to hit 11 on the calcium before you’d have any symptoms.” Which is total bullshit as anyone who had cracked a medical journal in the past decade would know.) I stopped going to the ER in 2018 with chest pain radiating into my right arm or heart palpitations and headaches making me nauseous, because I kept getting “How much stress are you under?” rather than medical evaluation for my worsening ECGs. I finally gave in and went again in December of 2020. THAT ECG said it looked like I had a heart attack sometime since 2018. They recommended a stress test. My primary (at the time, since fired) was going to deny it! She said, and this is almost a direct quote, “You are getting off acid reducers and everything is going to feel like a heart attack. Don’t go running to the ER everytime.” 1. I went to Express Care. They sent me to the ER after their ECG. 2. She had my ER records. Did she read them? 3. I hadn’t been to the ER since 2018, because I was always gaslit and I was tired of it. I fought her. I got the nuclear stress test. I have a 4.8 cm ascending aortic aneurysm, the kind of thing that can blow up and kill you quickly. You likely won’t make it to an ER.

    This… This is what doctors can do to patients who allow their psych records to mingle with the medical health records. You are FOREVER just a psych patient. This is how we die, on average, 15 to 25 years earlier of cancer and cardiovascular diseases than people without psych diagnoses.

    My best advice? If you can, avoid the fricking mental health system entirely. Most of the meds are useless anyway and have horrific side effects and withdrawal. If you absolutely NEED help, do not sign releases. Do NOT let those records be shared anywhere. Do not go to the same health network within which you seek medical treatment. If your records are already entwined, it is worth actively demanding amendments to those records IN WRITING. If the doctor disagrees with your assessment that your mental health diagnoses are doing more harm than good in your medical chart, you still have the right to insist that your words be added to those records to dispute them.

    It can be WAY worse than having your mental health needs ignored. They can ignore you AND use your answers on the Pfizer-gifted GAD 7 and PHQ 9 to block your access to life-saving medical care.

  • I apologize if my statement seemed to indicate that I thought the involuntarily committed were universally violent as a group. I know that’s not the case. I’ve come real close to being on the wrong side of that situation myself.

    However, I have certainly seen a fair number of fellow patient/inmates displaying various inappropriate behaviors. Usually, the patients unable to stay out of your space aren’t there because they volunteered.

    I did have one other question: Are there psych wards, institutions, etc. that aren’t locked? We have crisis beds available around here for a weekend at most. But longer than that and pretty much everyone is on lockdown together and likely being heavily prescribed.

    I am very determined to never get involved with inpatient treatment for any reason I can avoid from here on out.

  • I really need to write an actual blog about my experience of abuse at the hands of our local medical umbrella corporation. In my area, one corporation pretty much owns every medical practice nearby, including our new hospital.

    I am a Psychiatric Survivor. I spent about 8 years on various combinations of psychiatric meds, in combination with an active drinking problem! The psychiatrists knew of this problem. But somehow they thought my mental state would improve with the addition of up to 8 psych drugs in combination with my intoxicated baseline. At one particularly memorable detox at our local hospital, the on-call psychiatrist saw me for 10 minutes – again, actively detoxing from alcohol – and decided I was bipolar. I have never been manic in my life. Not once. He also thought that I had borderline personality disorder because I didn’t bow down and worship his expertise. These new diagnoses, of course, came with additional meds. That was in May of 2015 and was the beginning of my questioning just who the crazy ones were in this system. I came out of that detox with 8 meds, 3 of them newly prescribed, one of them being lithium! For an active alcoholic. I had already dropped 4 of them by the time I entered my final detox in October of 2016. After that, I gradually tapered off the last 4. It sucked. It was hell. And I’m not sure I am without damage to this day. But I am so much better now. I am functional. I am also no longer an alcoholic. I drink like six times a year now. It took getting off the psych meds to be able to do that, to make it worthwhile. If I was going to feel like total crap anyway on all the meds, drinking made more sense. When I felt better, I wanted to feel even better. So I drastically curtailed my alcohol intake and reengaged with my family, fighting for care for my daughter and for my aging parents.

    I also had a boatload of trauma, of course: Sexual assault in high school, domestic violence, and being ripped away from my career to care for a severely disabled child with autism, intellectual disability and some probably bullshit additional psychiatric diagnoses. I became utterly dependent on my husband financially and subject to his anger management and control issues, which were his way of coping with the trauma and bereavement related to our daughter’s conditions.

    What I needed was a social safety net that provided adequate support to a family with a severely disabled child with dangerous behaviors. What I needed was independence and the ability to support myself so that I could hold some power over my circumstances. Instead, I became a full-time, unpaid behavioral therapist in our little asylum until I lost my own sanity and just existed in self-imposed alcoholic lockdown. What I needed was informed trauma care. What I didn’t need was bullshit 12-step-based religious cult nonsense that added additional trauma and unhelpful labels and disempowering dogma. What I didn’t need was the sedation and iatrogenic illness of a truly bewildering array of psych meds.

    The continuing hell is this: Those diagnoses NEVER go away. Even when you actively fight to amend your medical record, you cannot remove those biasing diagnoses entirely. Medical software that supposedly the entire umbrella corporation uses ensures those diagnoses reside forever somewhere on your chart. Records you send to other providers, specialists, contain: depression, alcoholism, anxiety, etc. They aren’t listed as “Historical.” They are still in your “Current Problems,” because the practice never updates its records, never downloads your actual current list of conditions. The entire corporate system is aware of these limitations, but sees it as too big a problem to solve. Besides, alcoholics and the mentally ill never get better, right?

    Those diagnoses lead to medical practitioners assuming your every complaint is psychiatric in origin. It took almost four years to get diagnoses of hypothyroidism, hyperparathyroidism and an ascending aortic aneurysm of 4.8 cm. I do not know how long I have had the aneurysm and that one is particularly dangerous. If it ruptures, I am likely dead almost instantly. But, of course, when I present at the ER with heart symptoms, they do a troponin test and a quick ECG, maybe a chest x-ray. Since I’m not having a heart attack, my symptoms are put down to “panic attack induced by stress.” They never looked further until I had a recent episode and demanded a nuclear stress test, which revealed the aneurysm.

    These B.S. psych diagnoses do not go away and they are killing people. You have to be willing to be assumed to be ‘crazy,’ to be documented as being ‘crazy,’ to push for the healthcare you need to save your life. You have to get really comfortable with confrontation. You need to reach out to local mental health advocacy services, to file complaints with HHS – OCR (Office of Civil Rights under the ADA), and keep documenting. Make your doctors put in writing their refusal to treat. That will usually get them to back down. They know they’re wrong. They know they are discriminating against you. They won’t want it documented.

  • Thank you, Mwati! I loved reading your perspective on your treatment in psychiatric facilities. I, too, have wondered at the lack of separation of the sexes/genders. There should, at least, be a choice. Many of us have experienced trauma that contributed to our “mental illness,” some of that trauma being sexual assault, harassment, and physical abuse along gendered lines. Being in an unsecured environment with other people being treated for behavioral instability and throwing in mixed genders doesn’t really make us look like the insane ones, does it?

    There is precisely zero tenderness or concern for creating a therapeutic environment in state hospitals. They are primarily concerned about being able to effectively control the population with minimal cost. That results in a prison, not a treatment facility. Another bit of mixing that needs to be reconsidered is the aspect of criminality and/or violence. A person self-admitting as depressed with suicidal ideation should not be on lock-down with involuntarily committed patients presenting with aggression toward others. Taking someone voluntarily seeking mental health treatment and putting them in an environment that any “normal” individual would consider dangerous also seems a dubious choice. Treatment should avoid introducing additional trauma.

    Twoebegone and Mwati, I love what you both have to say about self-care and that some of us are just a bit more sensitive, perhaps, to environmental, biological, social and – definitely – political insults to our system. I do not do a great job of watching for my triggers and getting the right amount of the real food, exercise, sunlight, exposure to positive energy via reading, art, social outlets that aren’t political, etc.

    I do think our reactions to our culture, our culture’s standard diet, media, conventional medicine should be a warning to others. One thing psychiatry has always been really bad at – and this just screams that they do not actually believe their own B.S. about the biochemical model of mental health – is assessing patients first AS MEDICAL PATIENTS. I have hyperparathyroidism and hypothyroidism and, newly, adrenal fatigue. All of the above result in “brain fog” and a host of other physical symptoms that would have me scoring real high on the PHQ 9, if I ever answered it honestly anymore, which I don’t.

  • Beautifully written and so important. Thank you from the depths of my soul for sharing this.

    I didn’t hear narratives like your journey soon enough. I had years of additional mental, emotional, and physical trauma from harmful psychiatric treatment that has doubtless left permanent medical trauma throughout my body.

    It lifts my spirit to know you avoided that additional trauma and that you exist as a strong voice to claim space for our people, whatever their assigned diagnonsense, in this Universe.