What happens to patients after decades of “treatment”? What about the “lifers”?

You know “those people.”  Maybe you’ve ended up one of them yourself.  The losers that never stop going in and out of hospitals, treatment centers, therapy, and the like. They stay on disability. They are known in all the ER’s to be pains in the butt.  A drain on services in the community.  These people need to be “managed” and are best off kept ON their meds. Not much is expected of them, and they are likely to die young.

Whoa! Really? Folks, that’s precisely what the medical community believes. That we that ended up with the label “chronic mental patient” are living wasted human lives. They have no desire to see us thrive. They don’t want us to die weird, mysterious deaths (such as suicide) so they’ll lock us up to prevent any tarnishing of their reputations, but other than that, we don’t receive any “help.”  That’s why we receive the absolute bare minimum income the government can possibly give us, and the bare minimum health care, the least they can get away with.

It would be all fine and dandy, I mean, you can keep going to therapy, keep going to the programs and taking their pills and play kiddie games in the hospitals when you show up. Until what happens is that you start to notice that your body is saying, loud and clear,

NO!

Like when your organs give out. Maybe it’s your heart.  Or you start to get seizures from the meds.  Or your kidneys are destroyed, or your vision is permanently wrecked, or you get diabetes or the weight gain gets so bad that your knees collapse.  The meds screw up your hormones and ruin your bones. You can’t have sex cuz your sex drive disappeared ages ago.  You were told this was a “trade-off.”  You have uncontrollable shakes.  You can’t sleep. You sleep too much and can’t get out of bed in the morning. The meds mess up your balance and you can no longer walk straight.  You get permanent nerve damage or brain damage. You end up with Tardive Dyskinesia or some other permanent movement disorder.  You have severe anxiety or insomnia from meds.  You get manic from meds.  You feel like crawling out of your skin.  You lose your job due to side effects of meds.  You try to stop, go through horrible withdrawal, and you get blamed for stopping the drug.  You get memory deficit, confusion, and appear to have Alzheimer’s.  You appear to have MS.  You appear to have epilepsy.  You appear to be psychotic or manic.  You wonder why you got so fat and can’t lose weight.  You can’t stop throwing up because the pills make your stomach sick.  You wonder why you are addicted to sleeping pills or antianxiety pills after taking them only a short time.

You get despondent, more depressed, even suicidal. You start to hate the docs when before, you worshiped them.  They blame you for your bad attitude, tell you you will never make it. Maybe it’s time to think about a nursing home.  Or the state hospital.  Or if they can’t pull that one, a Rogers order.  Guardianship at least.

Folks, it’s never, ever too late to walk out.  Will you join me? Don’t allow your life to be ruined further or to be controlled any longer by these so-called “doctors.”  It’s time to take back our bodies.

Walking out was the hardest thing I ever did.  I am SOOOOOO thankful now.  I have saved my precious life.  I will be 56 in just over a week.  You bet it’s a celebration.  I am a “lifer” no more.

6 thoughts on “What happens to patients after decades of “treatment”? What about the “lifers”?”

    1. John, I seriously need to do some rewrites. I should write to them, though, see if they want someone to write for them. I should fix something up and send it. Good thinking. I LOVE Mad in America and am also very impressed with The Icarus Project as well. I’ve posted comments on both I think. Just comments, though.

      Julie

  1. Julie, I am your age give or take a year. (Okay, plus one) My father was a GP and one of my sons is a doctor. A fairly impressive one, and yes, I do notice a kind of arrogance but I think it comes from a place of self-protection or hardness so that they can cope. The ability to treat and treat fairly and ethically is not impaired by a degree of distance. I honestly think that doctors could not cope if they related to each individual on a personal level. My father is dead many years now, but I’m quite sure that he kept an emotional distance from his patients.

    1. I agree, and I strongly believe that any professional should have professional boundaries. In other words, a professional isn’t your best friend. So you don’t date that person. I argued with this girl who insisted on calling her docs by their first names.

      Yes, if it appears to be coldness, well, I’ve known patients that just didn’t understand that professional boundary and tried to be their doctor’s buddy. I would try to explain to certain friends of mine, back decades ago, not to hug their doctors each time they saw them, that maybe this was going too far.

      However, a doc’s complete disrespect for the patient is not okay. So I’d be on a “unit,” and I’d overhear the docs mimicking patients. You could hear them talking because they assumed we were hard of hearing. Or they assumed that we didn’t have any comprehension of what they were saying, so it hardly mattered, or we didn’t have real feelings that could be hurt. Or doing this mimicking right in front of me, making fun of the akathesia I had, or poking fun of my pimples. If I stuttered or slurred my speech because of the meds, they’d literally laugh at this. They would ask me a question, but they rarely allowed me to finish a sentence, or they’d put a cap on it before I began, saying, “I want a one-word answer.” They’d interrupt me mid-sentence and rarely even cared to hear the end of any sentence I began.

      Walk onto any medical floor and you see them in their huddles. Bunch of docs and medical students talking about a patient right out in the open. What the hell happened to HIPAA? Don’t they have conference rooms where they can do this? Last summer, I overheard many conversations about me that took place right outside my room, about “That anorexic whose family doesn’t care about her.” “Where is her family and why have they not called?” I overhead loads of conversation about me. And I’m not the only patient that has said this. We can hear. Many of us actually have normal hearing. What kind of respect does this show that they think they can speak of us and we are so sick and “out of it” that our feelings no longer matter?

      Back in the 1990’s, they poked fun of the part-time job I struggled so hard to get. No one else would hire a person with no work history. I felt like smacking these doctors. They told me I should go back to this menial job and not bother with college. That’s not professional boundaries. That’s disrespect. That showed they had a very low opinion of me and that they felt I had very little capability and very low intelligence.

      At this point, I don’t dare go to a doctor. I tell them I’m a writer and they look at me like I’m delusional. The only thing I can do is to go where no one knows me, completely lie and not mention having ever taken any psych meds, and say I’m on disability because of kidney disease.

      I plan to never mention I ever had an eating disorder, because this, too, is considered psychiatric, even though in just about all cases, eating problems are not truly behavioral or psychological or require psychiatric treatment, but reflect physical need. I believe eating problems are mostly bodily. They are usually inherited, and when they are they should be treated as such, with dietary measures, actual medical tests that measure real blood levels, possibly neurological testing, which is real scientific measurement, and not this psychiatric hocus-pocus, which is only gossip and someone’s opinion of how you look to them the day you walk into their office and what their mood is and how much you can pay them and what the other docs think.

      I plan to refuse any access to past records. And I truly don’t plan to see any docs soon.

      Julie

  2. Julie, you have obviously had some dreadful experiences and endured some unforgivable behaviour from uncaring doctors. My son is very caring and not at all cold. Very smiley and friendly, popular with all the patients. But, he doesn’t bring the problems out of the wards. Currently, he works as a registrar and next year he will start his training as an anaesthetist. Obviously, he is not a psychiatrist and when I read of your ordeal, I am very glad of that!

    Happy New Year.

    1. Anaesthesiology is a respectful position, requiring a huge amount of training and responsibility. I wish your son the best. People really need good doctors doing the anesthesia. I’ve had a lot of it cuz I went though shock treatments. I’ve had very little other reason to have anesthesia. I had six teeth pulled in 2011 while I was totally awake. Not a big deal really. I wasn’t all that fond of losing body parts.

      I remember when I had my tubes tied, I met with the doc who knocked me out and made all those decisions a few days before. She was quite kind and respectful. We went over the do’s and don’t’s. She reviewed with me every preparation and made sure I understood what to do the night before and what to expect after waking up. I was quite pleased. Actually, that procedure, having my tubes tied in 1995 went rather smoothly and the staff at the hospital were caring and thorough. All my questions were answered. My BF provided transportation and TLC afterward. I took a week off of work, that is, two days before to meet with docs, one day for the surgery, and I think a few days to recoop. I didn’t take pain meds, didn’t need them, but I had a heating pad that I found useful. I’m sure I took it easy the next week and it’s possible I didn’t work that week either. I can’t recall.

      Happy New Year!

      Julie

Feedback and comments welcome!