Saturday, February 24, 2018

Comments by Carlene Byron

Showing 6 of 6 comments.

  • 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.