Monday, December 5, 2022

Comments by Carlene Byron

Showing 21 of 21 comments.

  • Matt, thanks. If it weren’t for the patient support groups none of us would understand what’s happening to us. I did a 16 month tapered withdrawal from a benzo, and I’m still experiencing withdrawal effects more than 20 months after termination. I think we may have intersecting interests where our communities of faith are being encouraged to push people towards prescription care. Please reach out. I’d love to connect.

  • Karin, powerful stuff. And I’m entirely agreed that suffering has to have a place, that suffering often has a meaning, and that what it may often mean is: I’ve become disconnected from the belonging that is core to humanness. Which is why the kind of generous caregiving you have described can be so powerful. Thank you for this story.

  • I’m trying to withdraw from super tiny doses having tapered from 15 pills a day of 5 different meds to 1 capsule and 2 half-tabs. (Wanting to withdraw because I’m having all kinds of “medical” “side effects”). And when I tried to eliminate one of the half-tabs — BAM! crazy withdrawal. I’ll have to take time off work to cut any further (or wait till I retire). This so sucks.

  • You’ll also find mental health questions on …

    * Driver’s license renewals in at least 2 states
    * Employment applications for companies that do business with the government — not jobs that require security clearance, just jobs with federal contractors

    And totally agreed to limit MD knowledge of p-doc involvement. It’s bad enough being treated like a woman … an older woman … add psych stigma and quality treatment is in the trash.

  • And since the late 20th century, they’ve often been quick to judge (based on a current spiritual belief system) that people “choose” and “invite” into our lives the difficulties we experience … Which makes Auschwitz the fault of its victims, I guess. Walk in the strengths you have! Know you can do what matters. To have survived this far speaks of a powerful person. Best to you!

  • So true! We understand that isolation is a torture technique that can cause people to lose their sense of human identity … then we use it as a standard social behavior to separate “those crazies” from “everyone else.” And then are surprised that “those” people get worse. Thanks for writing. And my cats are huge in my success!

  • Let me qualify first by saying I belong to MIA because I have a dx and consider myself to have been very inappropriately “treated” in the current system. Having said that, I likewise wrote a brief piece about the time period when Raleigh NC’s Dorothea Dix hospital was a functional community of people with diagnoses and the live-on-campus staff who supported them. I “discovered” this subject after I met several people who had grown up on the campus, knowing that the place they lived was stigmatized and also seeing their parents welcome patients as guests when the kids sat down for afterschool cookies in their on-campus homes. There’s every reason to abhor what can happen in institutions; there are also reasons to consider how structured settings can facilitate life success. There’s a great deal of appropriate nuance in this conversation.

  • I’m saddened by what happened to you. I also find myself puzzled that so few clergy in the 21st century have trained in the traditional spiritual discipline of discernment — something that is within their own specialized arena — and so many have instead learned a limited version of the inimical psychiatric model. Some of the greatest experts in the Hearing Voices movement should come from our Christian and Jewish faith traditions. I am sad that so much of Christianity — my own tradition — has lost track of its own expertise.

  • Sandra, I’m so sorry about what has happened to you. Please know that you are not alone. Given that it is not safe to share these thoughts with the “professionals,” are there any people like you and me nearby with whom you might safely get the ideas outside of your head? I find it very helpful to have another person who knows what is going on and who isn’t afraid of it.

  • I apparently got flagged in the early trials. A first responder arrived at 1145 pm at the private shelter where I was living a couple years ago. Talk about feeling super-intruded! The shelter’s street address was not registered in any public information system, nor did any members of the private FB chat know the address. Totally creepy. Needless to say, these conversations are now offline.

  • Michael: I taught NAMI’s Family to Family for 8 years. The curriculum is standardized to the point that teachers read the script from the manuals. And we covered loads of meds info. NAMI is also where my husband learned to tell me, “Take your meds as prescribed or I will leave you.” (In the end, he decided he was “a woman in a man’s body” and I moved out, but that’s sort of another story …) After I left him, I’ve been able to titrate down my dosages with the help of a different MD in a region of the country that prescribes more conservatively. Now I take 3 pills a day instead of 15 (!!!) and am again professionally employed. So I’m not sure what NAMI course you could have taken that didn’t spend loads of time reviewing how different meds function, but it’s not the one I taught.

  • Yeah, I went to a NAMI national conference once expecting that after years of living behind a mask in my professional job I would be in a place where I could safely self-identify as a patient. Wrong! Once I put the “Consumer” ribbon on my name badge (along with the ribbons related to my NAMI volunteer activities), I found myself being shunted off to the side over and over. Most notably, during a lunch, I seated myself with some of the chapter leaders from my state … and they all left the table, guiding others with “Consumer” ribbons to their spots.

    I’m not 100% anti-meds, but I’ve lost a lot of years to the “side” effects my doctors thought were reasonable. Very glad to be back in a conservative treatment region where I take 3 pills a day instead of 15.

  • I don’t believe in the stigma of mental illness. What I do believe in is the extreme and socially sanctioned discrimination against people with these diagnoses. If you apply for a job in a federal agency or one with federal funding, you have to fill out a disability identification form where nearly 40% of the listed “disabilities” are psych diagnoses. I’ve been asked about my mental health status when renewing my driver’s license in two states. Before the ACA, a friend was denied insurance because of her “pre-existing condition” of depression, for which she was briefly treated after her husband left her several years previously. Any organization like NAMI that brands some people “consumers” while allowing much of its own leadership to live under-the-radar as “patients” is incapable of ending “stigma” because stigma is part of its own DNA.