Trying to avoid being homless, no advocacy groups for mental health in USA and no national discussion on mental health care.

[Tikirob]

In the past few years I have navigated the mental health system, at first as a person with private health care then public health care. What I learned is that it’s a system plagued by bureaucratic agencies that cater to the politically powerful and the rich like so many other businesses, but can America afford to keep neglecting its mental health?

I am not a person with a political affiliation, no I am just a mentally ill person trying to gain my life back, avoid the humiliation of using t-shirts as underwear, burning my nose with peroxide, or writing people because I am desperate for help. I am lucky, I can read Shakespeare and understand it, hold my own in conversations regarding aesthetics, and hum a tune. Not all in our community of mental health sufferes can. So what scared me the most in my search for mental health advocacy is the thought, “if I am finding it impossible to get help what must happen to people who are less functional than I am?”

It’s been three years since my diagnosis of severe OCD. I have posted my history before, pushed out of my job, friends frustrated with me, girlfriend told me to leave, and then the worst part, trying to get help from one agency that represents mental health patience to be my advocate. Not only is my disorder not treatable in New York City where Hospitals like Columbia and Cornell have advertised OCD clinics but it’s not treatable in any of the states that border it. These teaching hospitals which are now testing drugs such as Special K, Marijuana, and hallucinogenics on OCD patients including a short package of proven CBT treatment for their efforts along with a small amount of money may just be pushing the wall of ethical experimentation a little too far but what voice do we have as patients to ask is this ok? Who do we ask? If we’re scared? If we don’t want to be experimented on but can’t afford treatment? Who is watching the watchers? I know these doctors do help many patients and for mental health treatment experimentation is necessary but in my opinion if there is no patient advocacy then there is no limits to what can be done to patients who need affordable mental health care.

Not to mention that groups such as NAMI and for my predicament OCD International do not advocate on behalf of patients. They may guide patients to treatment and create their own treatment areas but will not take patient feedback and legally influence treatment based on a patients perspective. Please keep in mind that in my Mother’s lifetime, who retired not to long ago, people were given lobotomies for addiction issues. That mental health care facilities were filled with gays, essentrics, autistic and other socially oppressed groups, some of whom went on to be exploited creative geniuses.

I have contacted state, national, and local mental agencies explaining and reexplaining my plight and the plight of other mental health patients. My money is running out. I am looking at a homeless situation which would only cause taxpayers more money , why is it so hard to find advocacy now before I reach poverty? We need mental healthcare advocacy in America, I need affordable local treatment for my disorder by qualified professionals, hopefully one day a politician will make this his or her issue too.

[butterfly2121]

You are so right. I don't know why more emphasis is not placed on mental health care. These days more people than ever are afflicted by mental health issues. It is sort of a sad world we live in. There really do need to more resources for people. I am so sorry for all that you are going through and know it is so very hard. Keep your head up. You sound like a very strong person and I pray you find the help you need. Don't give up. I am surprised because I would think New York has good mental health care. It really varies state to state. It is not so good here in Texas. When I moved from Illinois, my Illinois psychiatrist kind of warned me. Boy was she right. Luckily I have finally found a good psychiatrist but it took me a good many tries and difficult doctor visits before I found one.

[butterfly2121 in reply to butterfly2121]

Also I do imagine having public health care probably does affect it a lot. The first doctor I went to here took a lot of poor families and would overbook his appointments. I give him kudos because his office visit fees were so low but the quality of care was not that great and he would literally book 5 people for the same time slot. So if you were the 5th person to arrive for that time slot you would wait a very very long time before your appointment. So much red tape sometimes.

[Tikirob in reply to butterfly2121]

Thanks for your support. And it’s interesting to hear that Texas does not have as good as services as Chicago. NYC has services for wealthy people and the very poor. The mental health hospitals are jammed with patients and multiple agencies get involved for just one patient depending on their circumstances. Some city workers get paid very little to work in these hospitals. The issues are not just patient driven but also driven by the lack of money given to staff. I would think NY would be more conscious of the mentally but it’s not. I wrote and called numerous officials who have very little to say outside an unhelpful form letter. I even spoke with a man representing the BAR committee on mental health law, clearly explained my issue, my years fold struggle trying to get a straight answer, and I will never forget this, he asked me if I tried Google! I then told him I just told you my whole story of all the agencies I called by name and that I have researched everything and then instead of responding to me regarding that starts typing and googling as if I was stupid or crazy, it was so humiliating, the lawyer association responsible for dealing with mental health laws was patronizing me.

[butterfly2121 in reply to Tikirob]

I hear what you are saying about everything being for the wealthy. Our society has gotten so greedy and money hungry. Yet like you say the workers are not paid a fair wage, medications are outrageously expensive and trying to get the correct medication is pure red tape most of the time unless you have the money to pay the outrageous cost that come with some of the drugs. Especially it seems the medications that do help the most. Our political system is broken. The lobbying groups are all politicians listen too. Please get out and vote if you can. I truly feel like things have got to change.

[Tikirob in reply to butterfly2121]

You are so right and that’s so true about the medication part. I just keep thinking if I had a heart issue instead of a mind issue would I be treated the same way? Would I be given a list of 7 medications and ask to choose one? Would I be told that if this one didn’t work there were three others I could try that only seemed to have a different name? And then be told that the effectiveness of the medication was not even at 70 percent? Would and 6th year med students act as my GP? In my 3 years of OCD treatment at 4 centers in NY I never had a board certified licensed psychologist work with me. Yet I paid 7000 dollars out of pocket with insurance because I was so desperate.

[reinagrace]

Hi Tikirob i know that all over, it's hard for all of us- but NY actually is one of the better states for mental health care. i lived in both NY , and then TX like butterfly2121 and actually moved to CO now for better resources. i am sorry that even in NY you are not finding good help. You said you're not political but please vote, its one tiny thing you can do. i used to never be a voter bc i know both sides have bad- but yes the Republicans are typically the greedy ones , who support the rich, and don't think mental illness is real . For us, the compassion is more likely from the Democrats. So have none of the traditional meds for OCD, worked for you? Some antidepressants help with that. i admire your efforts in contacting all those agencies- in this way you are helping all of us ! There's got to be low cost or free clinics there that can help you, i pray you find a good one and are able to get some symptom relief

[Tikirob in reply to reinagrace]

Hi Reinagrace. Sorry but I lost faith in our democracy last election. Not because of the outcome as much as the process. I am still in disbelief that the national inquirer came up so often in the republican debates, a laptop with government information was used by the democratic candidate secretary’s husband for illegal sexting to a minor, fake university scandals, explicit derogatory claims about how women can be treated sexually if you are famous, incest accusations, nude photos, hacks, fixes, sexism, lies and neglect of the poor in the heartland, not to mention that the one person who was the most wholesome gets railroaded out of the race by his own ticket. It was all too much to bare. Then all the shootings. My father was the victim of a school shooting many years ago. Students are still subjected to violence and young people area forced to navigate all the nonsense and the hatred that has follows. I can see people with anxiety issues staying away from the polls so I appreciate your encouragement. I may try to make it to vote on some bills. I have been on Luvox and Prozac too. I have received ERP at clinics but they only allow 2 50 min sessions a week for up to 5 months or so only to regress and start over. I need residential treatment and there is none here unfortunately.

[reinagrace in reply to Tikirob]

believe me i understand- i had never been a voter my WHOLE LIFE and that's over 40 years- bc of all that evil ! Like Clinton in the 90's - i was so disgusted and always avoided politics. But i had to do something now and vote against the Republicans bc they want to CUT the help we already have- so for the sake of myself and anyone else with mental or other disabilities- i voted Democrat. Even if the Democrats do nothing for us , at least they are not AGAINST us as the heartless Republicans. At the very least , having the Democrats take Congress today, will keep them all from doing anything as they can just keep blocking each other and Trump will have a hard time moving forward with any of his evil plans to keep the rich getting richer at the cost of the poor and the sick. So have the meds helped at all? What about assisted living facilities- that is the main reason i moved to CO- bc here they allow people to live in those facilities, before being in their 60's (some places) and the Medicaid voucher for assisted living/homecare, does cover mental illness here. Contact your local medicaid and inquire about assisted living- i'm curious to see how that would go. Hope it goes well

[Tikirob in reply to reinagrace]

I tried to get some home care, wait till you hear this. The lady came over and talked to me for a half hour about how bad her job is. She then asked me if she thought my girlfriend was trying to get me out of the house, perhaps she is with someone else. My girlfriend then called and talked to her and she told my girlfriend that maybe I was just lazy and needed a job. We were both stunned by it. I was going to have her investigated but was already overwhelmed by my human rights case and treatment and finances, and disorder. I have filed for affordable housing while working and not working. This City really is ass backwards and expensive.

[reinagrace in reply to Tikirob]

I'm so sorry about that awful experience . I imagine NYC is probably overloaded. I lived in Manhattan long ago, before my mental illness was so bad i had to get on disability . I lived in a residence run by nuns, bc they charged affordable rent. It was just renting a room. There are residences for men like this. I liked it there, i made good friends and it was in a good part of Manhattan. I pray you are able to get good help

[Tikirob in reply to reinagrace]

Thank you! That will be great for me, as long as it’s pretty safe and clean. I am glad to read your comments because if you were in Manhattan and now you are somewhere else still keeping up then it gives me hope too.

[Tikirob]

Hey thanks!!!! I’m lucky I got a cousin right now helping me a lot but I can’t always lean on home so I am just trying to keep up, might have to move out of this place!

[Tikirob]

Thanks, here I am up so late, it seems the Democrats got the house back so medical coverage still is in the mix. Yeah I am seeing the light a bit, might be time to go to a nice town somewhere else, I feel like an invisible man here these days in NYC

[PeaceNeed]

I hope things worked out for you and you are able to read this text.My situation similar to yours.